tag:blogger.com,1999:blog-180798312024-03-01T10:16:18.540+00:00Was this in the Plan?A blog by Stephanie Nimmo about being a carer, disability, palliative care and conversations about death, dying and grief.Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.comBlogger278125tag:blogger.com,1999:blog-18079831.post-87312412811264831112022-12-31T18:25:00.000+00:002022-12-31T18:25:08.974+00:00Daisy would have been 18 this month<p><span style="font-family: helvetica;">I've just reached a huge milestone in my life without Daisy. This is the month that she should have turned 18. It was a day I dreaded when she was alive and fills me with a whole range of emotions now that she's no longer here.</span></p><p><span style="font-family: helvetica;"><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXCWpjTgnf7UWI_YPyqpKVpKHGqBSl3MUUQZwupv3x7kvsINpSuFbtCQ1TUQ1q0YKHdUYvOCdEAMkPYQMTO1c4AXKBvxzjg8dqKRMMgHm0KOcoRe4J8i8wKe3VnlxPr270T6N_Uct5ghKHHBm91bUIa4UgUoIez_k8lcj6phk0Sxz7RJBVGBg/s960/321438738_877091276670088_330336821193957795_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Daisy wearing minnie mouse ears and a princess anna dress holding looking out to the show from the disabled access area at the O2 arena in greenwich" border="0" data-original-height="960" data-original-width="960" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXCWpjTgnf7UWI_YPyqpKVpKHGqBSl3MUUQZwupv3x7kvsINpSuFbtCQ1TUQ1q0YKHdUYvOCdEAMkPYQMTO1c4AXKBvxzjg8dqKRMMgHm0KOcoRe4J8i8wKe3VnlxPr270T6N_Uct5ghKHHBm91bUIa4UgUoIez_k8lcj6phk0Sxz7RJBVGBg/w400-h400/321438738_877091276670088_330336821193957795_n.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><div><span style="font-size: x-small;">Daisy watching Disney on Ice's Frozen on her 12th Birthday</span></div></td></tr></tbody></table><br /></span></p><p><span style="font-family: helvetica;">22nd December 2004 was the day my life changed beyond measure. The day that Daisy Rose arrived into the world, blue and angry and determined to show everyone who was boss.</span></p><p><span style="font-family: helvetica;">It's a bittersweet day in so many ways, loaded with meaning and memories and significance. I'd been so ill in the weeks before Daisy's arrival, mainly in hospital, pumped full of steroids, with regular procedures to try and reduce the significant amount of amniotic fluid which was threatening to trigger a dangerous, premature birth. I'd only been allowed home for very short periods, to wrap the children's Christmas presents and get ready for what was going to inevitably be a premature baby. The instructions I was given each time I went home was that if my waters broke I needed to get down on the floor with my bum in the air to prevent the umbilical cord prolapsing, and to call for urgent help. It's still a huge relief to me that the good people of London were never witness to this event in the middle of John Lewis just before the festive season.</span></p><p><span style="font-family: helvetica;">In the end, as I became more anaemic and developed a liver condition and it was clear that things were not right with Daisy, it was decided that her entry to the world would be carefully managed via a c-section. And so I found myself, first on the list on 22nd December 2004 as my obstetrician sliced me open and the theatre team jumped back as waves of amniotic fluid splashed on the floor, and Daisy was lifted into the world and very quickly whisked away to be stabilised and transferred to the neonatal intensive care unit.</span></p><p><span style="font-family: helvetica;">And so our story began, and the life I once knew was replaced by a very different life.</span></p><p><span style="font-family: helvetica;">We were told that Daisy might not see her first birthday. But she did. Every year she defied the odds and we celebrated her arrival in the world, treasuring every moment and marking every year she was with us. Her eleventh birthday was a week after her daddy died but we still made sure she had the best time celebrating.</span></p><p><span style="font-family: helvetica;">22nd December 2016, Daisy's twelfth birthday. She was clearly deteriorating, not just physically but the seizures were also taking their toll on her cognitive abilities and her ability to tolerate crowded places and noise was diminishing. I had bought her tickets to see Frozen on Ice in London. We dressed her in her favourite Princess Anna dress and took the tube to Greenwich but the excitement, noise and crowds were overwhelming. She was so happy and loved hearing her favourite songs and spending her pocket money in the shop but she was also lashing out at anyone who came too close and it was clearly all a bit too much for her.</span></p><p><span style="font-family: helvetica;">On the train home I remember saying to Theo that it was probably the last trip out we would take with Daisy, that the sheer physical and mental effort for her was just too much and it was not fair on her, on us or on any unsuspecting person who came a bit to close to her.</span></p><p><span style="font-family: helvetica;">Those words were prophetic as it was to be Daisy's last birthday. It was almost as though she was hanging on for her birthday and then Christmas, her absolute favourite time of the year. By January it was clear that the window was closing, she was able to do less and less and her health took a rapid and dramatic downward spiral. Although she'd had episodes like this before it was clear that she just didn't have the reserves left to fight and the toll and grief of losing her daddy the year before clearly played a part. </span></p><p><span style="font-family: helvetica;">Daisy died in Great Ormond Street hospital's intensive care ward on the 31st January, just one month after her twelfth birthday.</span></p><p><span style="font-family: helvetica;">And now her 18th birthday has just passed, the sixth birthday that she hasn't been here with us.</span></p><p><span style="font-family: helvetica;">I took a card to the chapel at Great Ormond Street Hospital as I always do, I feel close to Daisy there, it was a place of quiet contemplation during so many stressful and anxious hospital stays. It always seems to be the place I'm most drawn to on her birthday and her anniversary.</span></p><p><span style="font-family: helvetica;">And I contemplated, this year, about what turning 18 would have meant for Daisy. When she was alive I dreaded the prospect, because turning 18 meant becoming an adult in the eyes of the law and for the health care support she needed just to survive. In fact in the UK, once a young person with medically complex needs is 16 the process is supposed to start to begin a two year transition to adult services, let's just say that really doesn't happen as it should.</span></p><p><span style="font-family: helvetica;">However I vividly remember as Daisy approached her 12th birthday her gastro consultant mentioned that in the next couple of years we should begin to think about the adult services available to care for a medically complex child with complete intestinal failure like Daisy. We agreed that the plan for transition would need to happen a lot earlier and a lot of work would need to take place to find a solution if Daisy did get to that point.</span></p><p><span style="font-family: helvetica;">It filled me with such fear. Daisy was always defying the odds but what if she did make it to that point. She wasn't just a young person with complete intestinal failure, requiring 24/7 TPN and IV infusions, she also had a learning disability with autistic traits, uncontrollable multi-focal epilepsy, cardiomyopathy, neuropathic bladder, orthopaedic issues, visual impairment ....the list was endless. But most importantly of all, despite all of the medical issues, she was a young person with her own opinions and wants and needs who also needed to be cared by a medical team who knew her and understood her. And all of that was just for her regular care. What if she needed a hospital admission? Adult services are very different to children's services yet Daisy would be a child in an adult's body by then.</span></p><p><span style="font-family: helvetica;">I remember when we moved into our first house we met our neighbour Maureen and her adult daughter, Jacky. Jacky was the last child still living at home, with Maureen who had been widowed for a while. Her adult children helped out but it was very much about Maureen and Jacky. Jacky had a learning disability, caused probably by a genetic disease, but she was very physically able. She also had severe epilepsy and was unable to live independently.</span></p><p><span style="font-family: helvetica;">I remember the times when Jacky would have seizure after seizure overnight and Maureen would tell me the next day how she'd managed them at home, desperately trying to avoid having to call an ambulance for her daughter, knowing that no-one would understand Jacky's routine, or her needs if her mum wasn't there.</span></p><p><span style="font-family: helvetica;">Maureen died of cancer and within a year Jacky had died too. Her death certificate had stated that she'd died following a seizure but everyone agreed that she had died of a broken heart, unable to function without the support of her mum.</span></p><p><span style="font-family: helvetica;">"If anything happens to you Steph, I'm not sure at this point in time where Daisy could go" those words, spoken by a social worker, chilled me to the bone. I knew it was true. Daisy needed specialist care, because she was on intravenous nutrition (TPN), 24/7, she could only be cared for by an IV trained nurse or me. And not only were IV trained nurses prepared to do home care shifts or to be with Daisy at school hard to find, they were also very expensive. </span></p><p><span style="font-family: helvetica;">Everything was a battle, I'd fought so hard for Daisy's continuing care package but even when the funding was in place, it was impossible to fill all of the shifts. And in Daisy's final year I was told that the package needed to be reviewed as it was so expensive. I was the unpaid carer that everyone was leaning on to hold it all together. Daisy couldn't go to school often because there would be no nurse available to take her, respite nights would be canceled when the only IV-giver available was unable to work. And of course I also had three other children who needed me, let alone the fact that I'd not even had time to register that my husband had died only a few months before.</span></p><p><span style="font-family: helvetica;">So that's why I lived in fear of Daisy reaching 18. How could we keep going like this? What would happen to Daisy if I was not there to keep her safe? </span></p><p><span style="font-family: helvetica;">The system is simply not set up to care for the most medically of complex children. They are expensive, time consuming and resource intensive for commissioners to have to deal with. So instead they are cared for by fragile network of unpaid care and extended family networks.</span></p><p><span style="font-family: helvetica;">Daisy was never meant to reach adult hood, she worked hard at being alive and enjoying life but I knew in her final months that her window of quality of life was closing. That last trip out for her twelfth birthday was the one that really spelled it out, she was exhausted, in pain and had no reserves left to keep fighting and I knew that this was the beginning of the end. If Daisy had lived longer than the 6 weeks she lived after her 12th birthday what would have been the cost to her? The frustration of not being able to do the things she loved? To engage with life in the way she wanted to? There is some comfort in knowing that in many ways she chose her time, one last birthday, one last Christmas , and then only a few weeks into 2017 she decided it was time to go.</span></p><p><span style="font-family: helvetica;">And that's why there's such a mixture of bittersweet sadness when I think that Daisy would be 18 now. I would never ever allow myself to imagine what life would have been like if she hadn't been born with Costello Syndrome. She wouldn't have been the amazing Daisy that we knew, she'd be a different version, but not the one that I'd grown to love. But she had such complicated medical issues that her wonderful personality was eventually ground down by the seizures and drug regimens and frustration.</span></p><p><span style="font-family: helvetica;">Medical science kept Daisy alive and I believe that Daisy also chose when it was her time but the reality is many medically complex young people are surviving into adulthood, and the system is just not set up to cope. It wasn't when Daisy was alive, now, post-pandemic, post-Brexit, even less so. We were lucky to be able to get funded respite nights, now funding has been pulled, staff shortages mean that even less nights are available and it still comes down to a post code lottery and who shouts the loudest. Families have to hit crisis before a patchwork of help is put in place. It's just not sustainable and carers are on their knees. It's not surprising that a <a href="https://adc.bmj.com/content/106/10/987" target="_blank">recent study</a> shows that there is a clear link between <span style="background-color: white; color: #333333; font-size: 17px;">higher incidence rates of common and serious physical and mental health problems and death in mothers of children with a life-limiting condition.</span></span></p><p><span style="font-family: helvetica;"><span style="background-color: white; color: #333333; font-size: 17px;">We can't invest in the health and science that enables children and young people with complex and life limiting conditions to live longer without the support services that are then needed to allow them to stay safe and well at home. And as medical science means that they are living longer then it's not just about paediatrics but about transition into adult services.</span></span></p><p><span style="font-family: helvetica;"><span style="background-color: white; color: #333333; font-size: 17px;">It's so screamingly obvious and so desperately frustrating. I look at my friends still in that world, fighting, day in, day out, just to ensure their child has care and is safe and out of hospital. And at times my grief is tinged with guilt that my fight is over (in some ways).</span></span></p><p><span style="font-family: helvetica;"><span style="background-color: white; color: #333333; font-size: 17px;">There are words of advice I give my friends over and over and they're always worth repeating:</span></span></p><p><span style="color: #333333; font-family: helvetica;"><span style="background-color: white; font-size: 17px;">1. Make a will! We should all have an up to date will if we have dependent children, even more so if those children are dependent for life. Who will look after them if you can't? What are your wishes for them? Don't think it won't happen to you, it happened to us. I didn't think that Andy would die and I would be left single parenting, but these things happen, so plan for them.</span></span></p><p><span style="color: #333333; font-family: helvetica;"><span style="background-color: white; font-size: 17px;">2. If your child lacks mental capacity because they have PMLD, apply to become their deputy once they turn 18 (both for financial and medical concerns), and don't let anyone fob you off that it's difficult to get. I supported a friend to go through the process for her daughter, it means that she now has a say about her daughter's medical care, her continuing care package and her needs. Without this she would feel disempowered (until she was needed to be the unpaid carer, funny how the system works that way...). We found that the staff at the <a href="https://www.gov.uk/become-deputy">Office of the Public Guardian</a> are very helpful. Yes, there's lots of forms, but we're used to that and it's all about gathering the evidence (isn't it always).</span></span></p><p><span style="color: #333333; font-family: helvetica;"><span style="background-color: white; font-size: 17px;"><br /></span></span></p><p><span style="color: #333333; font-family: helvetica;"><span style="background-color: white; font-size: 17px;">It's new year's eve today. Another year about to pass where I haven't held Daisy, ruffled her fuzzy hair or heard her call out for me. It's so hard, not a single day goes by when I don't think of her. I miss her so much, it's a scar that I will carry with me to my grave. 18 feels like such a big age, but she gave us twelve wonderful, precious years that changed our lives and changed many lives. She was unique and exceptional and her short life had value .</span></span></p><p><span style="color: #333333; font-family: helvetica;"><span style="background-color: white; font-size: 17px;">I continue to campaign for those I've left behind and as we enter 2023 I've got some really great news. Following the disappointment earlier this year when my original publisher decided not to go ahead with my latest book, Anything for my child. A new publisher has offered me a contract and the book will (fingers crossed) be available in late in 2023. It's a very different book from my previous two as I look at the tipping points that cause conflicts between parents caring for medically complex children and the professionals supporting them. That book is so important because it's not just about my story, there's lots of stories in there, it's about all of us who have had to struggle just to keep our child safe and alive. It is, I hope, Daisy's legacy. She didn't reach 18 but she taught me so much and that was her greatest gift.</span></span></p>Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-25653761002051252742022-08-03T01:34:00.006+01:002022-08-03T01:36:05.479+01:00As another best interest case hits the headlines - what needs to change?<p><span style="font-family: arial;"><i> Once again another high profile case is in the news in the UK as a family navigates the court appeal system in a bid to prevent clinicians caring for their child from ending life supporting treatment.</i></span></p><p><span style="font-family: arial;">Archie Battersbee, a beautiful 12 year old boy with a mop of blonde hair has been in a coma and ventilated since suffering a catastrophic brain injury in April. His mother believes he was taking part in an online challenge. He has never regained consciousness and doctors<span style="background-color: white; color: #141414;"> treating him have said they </span><a class="ssrcss-k17ofw-InlineLink e1no5rhv0" href="https://www.bbc.co.uk/news/uk-england-essex-62175556" style="background-color: white; border-bottom: none; border-image: initial; border-left: 0px; border-right: 0px; border-top: 0px; font-stretch: inherit; font-variant-east-asian: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; padding: 0px; text-decoration-color: rgb(138, 140, 142); text-decoration-skip-ink: none; text-decoration-thickness: 1px; text-underline-offset: 0.25em; vertical-align: baseline;"><span style="color: black;">believe it is</span> <span style="color: #141414;">"highly likely" he is brain-stem dead</span></a><span style="background-color: white; color: #141414;"> </span><span style="background-color: white; color: #141414;">and argue it is in his best interest for life-support to end.</span></span></p><p><span style="font-family: arial;"><span style="background-color: white; color: #141414;">His parents however have been engaged in a high profile court battle against the NHS Trust caring for their son as they appeal the decision to end life sustaining treatment. While the view of the treating clinicians is that continuing to treat Archie is "delaying the inevitable" his parents feel that this will hasten his demise and they are not ready to do this yet. </span></span></p><p><span style="font-family: arial;"><span style="background-color: white; color: #141414;">It's really important to emphasise here that counter to the chatter on various social media platforms disagreement between Archie's parents and the NHS Trust is is not about his recovery but about the timing and manner of his death (see the supreme court <a href="https://www.supremecourt.uk/news/dance-and-battersbee-v-barts-health-nhs-trust-permission-to-appeal-decision.html" target="_blank">decision</a> for more context).</span></span></p><p><span style="font-family: arial;">In the middle of all of this is a dearly loved son, two devastated parents and a clinical team who are finding themselves caught up in an ethically distressing situation.</span></p><p><span style="font-family: arial;">Here we are again. The tabloid headlines screaming, twitter full of opinions and the only people who know the reality of the situation are the people at the centre of it all, around Archie's bedside; his parents, his doctors, his nurses.</span></p><p><span style="font-family: arial;">So how did it get to this point? How did the final days of a child's life once again get played out in the public domain? An all too frequent and familiar scenario of distraught parents, clinicians bound by patient confidentiality, lawyers, court appointed guardians and barristers? C</span><span style="font-family: arial;">ourt judgements and appeals?</span></p><p><span style="font-family: arial;">I spent most of last year investigating cases like this. Looking at the ethical dilemmas that parents and clinicians caring for the most complex of children are confronted with day in day out. In the majority of cases they don't hit the headlines, or even reach the courts but there are many times when trust and communication breaks down and parents disagree with the doctors treating their child.</span></p><p><span style="font-family: arial;">Having been faced with the decision to end my own daughters life supportive treatment I wanted to understand why this breakdown in trust and collaboration happens, what leads to this point?</span></p><p><span style="font-family: arial;">I interviewed many parents and clinicians, spent hours reading court transcripts and became a bit of an amateur medical bioethicist as I explored what it means when , just as in Archie's case, a parent is prepared to do "anything for their child".</span></p><p><span style="font-family: arial;">I have learned so much, as I have sought to try and understand the impact and influences on parents struggling to make the most difficult of decisions for their child and as I watch the sad case of Archie Battersbee being played out in an all too familiar pattern it's obvious to me that something needs to change. </span></p><p><span style="font-family: arial;">So I thought I'd try and summarise them through my long neglected blog:</span></p><p><span style="font-family: arial;"><i>(These are my personal thoughts, not the the thoughts of any organisation I am associated with or work for but just stuff that I've learned and that, to me, makes sense):</i></span></p><p><span style="font-family: arial;"><i><br /></i></span></p><p><b><span style="font-family: arial;">1. The doctor/patient (or in this case parent) relationship has changed dramatically.</span></b></p><p><span style="font-family: arial;">The pendulum has swung dramatically. "Doctor knows best" was the mantra in my parent's time, where a paternalistic model, based on knowledge and advice that was unquestioned and sacrosanct, was the norm. Now we live in a more autonomous world where, thanks to the internet, parents feel empowered to challenge clinicians, presenting them with papers and information to back up their arguments. I know this because I did it myself. After all when your child has a super-rare genetic disease there is no way that a clinician is going to be up to speed with the latest gene therapy treatments or monitoring advice. A parent however has so much more at stake. I have spent hours of my life online research my daughter's condition to ensure that I knew everything possible about it to be able to support and advocate for her.</span></p><p><span style="font-family: arial;">Parents are expected to be advocates. We are no longer told what in the opinion of the clinician is best for our child, instead we are given options and then we are asked to make a decision. Has the pendulum swung too far? Now doctors are asking parents to make decisions that no parent should ever have to make. I can't ever remember a doctor telling me what to do for Daisy. Rather I was presented with choices, try this medicine, attempt this surgery and then asked what I wanted to do for her. That's a heavy burden to carry. To make a decision like that on behalf of your child. Have we, in moving away from a paternalistic model abandoned parents to their autonomy? Has the pendulum swung too far in how parents and clinicians engage?</span></p><p><span style="font-family: arial;">Which brings me to the next big issue. When it comes to ending life supporting treatment are we asking parents to make an impossible choice?</span></p><p><b><span style="font-family: arial;">2. Is "best interests" an appropriate approach?</span></b></p><p><span style="font-family: arial;">In all of the cases I've researched and examined, just as in Archie Battersbee's case, the principle of "best interests" is always at the centre. The best interest principle is enshrined in article three of the international convention of the rights of the child which states:</span></p><p><span style="background-color: #f7f3f0;"><span style="font-family: arial;"><i>“In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.” (United Nations Convention on the Rights of the Child"</i></span></span></p><p><span style="font-family: arial;">"Rights of the child" - that's the key phrase. That's why in all these cases the child has their own legal representative in court. So when a parent talks about their parental rights, it gets complicated, because how do we know that what the parent wants for the child is in the "best interests" of the child? When the convention on the Rights of the Child was being developed "best interests" was about <span style="background-color: white;"> </span><span style="background-color: white;">safety, health, wellbeing, family relationships, physical, psychological and emotional development, identity, freedom of expression, privacy and agency to form their own views and have them heard. Science, medical breakthroughs, genomic profiling and so many other advances now mean that so much more can be done to support patients when previously they would have died. "Just because we can, does it mean we should?" is an ethical dilemma that clinicians struggle with every day. Should this child be ventilated? Should this child be put through this major surgery? Should this child receive untested stem cell treatment? and so the list goes on....but what's in the best interests of the child? If we take this right back to the basic question, then we are asking parents to make a binary choice when it comes to disagreements around continuing life-sustaining treatment. In other words by telling me that continuing life sustaining treatment is not in my child's best interests then the only other choice you are offering is death.</span></span></p><p><span style="background-color: white;"><span style="font-family: arial;">So the question then becomes does "best interests" offer parents a binary choice of life or death? and should that be a choice that we should be even asking parents to make? It's rooted in emotion and combat.</span></span></p><p><span style="background-color: white;"><span style="font-family: arial;">Some ethicists are now beginning to question whether the "best interests" argument is relevant in this scenario.After all its binary and emotive - what parent wants to be the one who ultimately agrees to terminating their child's life. That's a heavy burden to carry. I should know, it's a decision<a href="https://www.bmj.com/content/360/bmj.j5771"> I had to make.</a></span></span></p><p><b><span style="font-family: arial;">3. How are we supporting parents who find themselves parachuted into this alien world?</span></b></p><p><span style="font-family: arial;">Just like Archie's mum, I found myself having to navigate a very alien world after Daisy, my fourth child, was born. Overnight I went from a confident, senior director and experienced parent to feeling disempowered and trying to navigate a system for which I'd had no training or previous experience.</span></p><p><span style="font-family: arial;">I've been thinking of Archie's mum. Suddenly finding herself in this alien world. Having to learn medical language and jargon. Knowing that she was having to advocate for her precious son, to be his voice, to make decisions on his behalf.</span></p><p><span style="font-family: arial;">Think about it? How would you feel? The only analogy I can draw is that of a refugee finding themselves in a foreign land, surrounded by people they couldn't understand knowing they had to fight for their survival. That's what it felt like when Daisy was born. She needed me to be her voice. She needed me to make decisions for her that were in the realms of extreme parenting, that no parent should really ever have to make.</span></p><p><span style="font-family: arial;">When Daisy was born I barely knew what the word phlebotomy meant by the time she died, 12 years later, I was running the equivalent of a high dependency unit in my home in order to support her medical needs. How the hell had that happened and who was supporting me (especially given that my husband, her beloved daddy, had died of cancer a week before her 11th birthday)?</span></p><p><span style="font-family: arial;">Who supports parents who are suddenly flung into this world, whether by gene mutation, premature birth. disease or catastrophic injury? Who helps us navigate this complex world of health and care? No wonder so many parents lean on the internet for support or find themselves vulnerable to people with their own agendas.</span></p><p><span style="font-family: arial;">We don't have a robust system of independent advocacy in this country. Parents are left to navigate their own course. Chaplaincy services plug some of the gaps as do the <a href="https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/">PALs service</a>s. But it's piecemeal and unstructured. Theres no-one to come to meetings, translate the medical jargon, to help parents understand what's happening. Is it any wonder they turn to the internet?</span></p><p><span style="font-family: arial;"> And hopefully they find good advice and support but sadly there are far too many people who want to use vulnerable people to push their own agendas.</span></p><p><b><span style="font-family: arial;">4. So when a disagreement occurs, what should we do?</span></b></p><p><span style="font-family: arial;">What happens when a disagreement escalates into conflict? When clinicians and carers disagree and the only option appears to be resolution through the judicial process?</span></p><p><span style="font-family: arial;">When couples separate they are encouraged to seek out mediation rather than automatically resorting to the courts. Why is mediation not offered more regularly in hospital Trusts when relationships between clinicians and families break down? Sarah Barclay co-founded The <a href="http://medicalmediation.org.uk">Medical Mediation Foundation</a> following her time spent as a broadcast journalist reporting on a high profile case around the medical treatment of a child in the eighties. She believes that conflict and breakdown of trust arises from a number of tipping points around communication. How is the role of the parent carer, their lived experience and input valued in discussions around a child's treatment and care? . I know I experienced some distinct positive and negative tipping points in how I interacted with the health professionals caring for my daughter and these shaped my relationship with the clinical team moving forward.</span></p><p><span style="font-family: arial;">Would the offer of more widespread mediation services prevent disputes escalating into conflicts? Would they prevent cases reaching court? </span></p><p><span style="font-family: arial;">One thing I do know is that as long as both parties are open to engaging in mediation it's an opportunity to give it a shot, to get everyone around the table, on an equal footing to try and find a solution.</span></p><p><span style="font-family: arial;">It's all down to communication. Like any relationship really. Medicine is a people profession after all so why don't we spend more time training our medics to communicate? And to recognise when a dispute may escalate into a conflict? Why don't we give our medical professionals better tools to be able to de-escalate this situations and a way to come to a resolution without going to court?</span></p><p><b><span style="font-family: arial;">5. Ethics and the scientific conundrum</span></b></p><p><span style="font-family: arial;">The mapping of the human genome, advances in data profiling and technological advances - all of these things and more have meant that clinicians have so many more options available to them when it comes to treating patients. And this means that there are more ethical dilemmas to be faced. "Just because we can, does it mean we should" is all too frequently becoming the dilemma faced by doctors in deciding what course of action to take for patients.</span></p><p><span style="font-family: arial;">And in parallel we've seen the growth of the medical ethics discipline as a mechanism for clinicians to obtain advice and guidance on what course of action to take.</span></p><p><span style="font-family: arial;">Over the pandemic ethics panels and committees in NHS trusts grew rapidly as clinicians were faced with having to make decisions around who should receive priority for the finite healthcare resources available.</span></p><p><span style="font-family: arial;">Daisy was referred to ethics. Should she be put through a major surgery was the question being considered. I didn't know this at the time. Among parents the role of the hospital ethics panel is a bit of a mystery. Should I have been invited to present my viewpoint ? Or was this something just for clinicians to use as a sounding board for advice and guidance?</span></p><p><span style="font-family: arial;">Medical ethics and the role played by clinical ethics panels in supporting clinicians is a rapidly evolving discipline, but is it fit for purpose? It has evolved in reaction to a changing clinical landscape but there's no firm overview on how ethics can support clinicians (and parents) in making difficult decisions and how there is inconsistency in how an ethical review of a case is carried out.</span></p><p><span style="font-family: arial;">There's no doubt that in our changing world, ethical opinions are needed to support clinicians.One of the big outcomes of the the Charlie Gard case was the call for a more robust ethical review process for cases where there is a disagreement between what parents and clinicians think is best for a child.</span></p><p><span style="font-family: arial;">So back to the Archie Battersbee case...</span></p><p><span style="font-family: arial;">I remember how it felt, to be thrown into an alien world and then being asked to make decisions about my child. I felt disempowered and frantically tried to work out how to navigate this complex system. Because my child's life was at stake.</span></p><p><span style="font-family: arial;">But I had time. I had twelve years with Daisy. Twelve years in which to hone and develop my skills. For some parents, parents like Archie's, they have only a matter of weeks or months. They desperately reach out for support. They're vulnerable . They are trying to do the right thing for their child. Their world has been turned upside down and they are living through the unimaginable.</span></p><p><span style="font-family: arial;">Clinicians are trying to help them, drawing from whatever skills, experience and support they have.</span></p><p><span style="font-family: arial;">it's an awful situation. Human beings trying to do the right thing, with a child at the centre.</span></p><p><span style="font-family: arial;">We can do better. For everyone. For the parents, the child, the doctors, the nurses. There must be a better way than resorting to the courts, to social media, to conflict.</span></p><p><span style="font-family: arial;">So (in my opinion) the questions we as a society need to be asking are:</span></p><p></p><ul style="text-align: left;"><li><span style="font-family: arial;">How do we help parents, parachuted into this world, make sense of it all?</span></li><li><span style="font-family: arial;">How do we help clinicians and parents sit together and resolve conflicts?</span></li><li><span style="font-family: arial;">How can we do better for everyone involved?</span></li><li><span style="font-family: arial;">How can we do better for the child at the centre of it all?</span></li></ul><p></p><p><span style="font-family: arial;">It's just my opinion but we need to look at the tipping points. What turns a disagreement into conflict. How communication can make or break the parent/clinician relationship, how we support parents to make sense of this alien world, how we support clinicians.</span></p><p><span style="font-family: arial;">How do we humanise the dialogue, it's not them and us, it's human beings trying to navigate a flawed process. </span></p><p><span style="font-family: arial;">Unless we go back to the basics, to communication and better emotional and practical support there will be more cases like Archies. Played out in the public domain. </span></p><p><span style="font-family: arial;">Tonight my thoughts are with Archie, his parents, his doctors, his nurses...all trying to do their best, all living through the unimaginable.</span></p><p><br /></p><p>An update about my new book:</p><p><i><span style="color: #2b00fe;">Earlier this year I announced that my third book, <a href="https://www.wasthisintheplan.co.uk/2021/12/anything-for-my-child-book-cover-reveal.html" target="_blank">Anything for my child - parenting at the edge of medical science, was to be published by Oxford University Press.</a> I signed a contract with OUP to deliver my manuscript which was to be a narrative account of my life caring for Daisy, my fourth child, born with a rare genetic disease which would also explore the ethical dilemmas faced by parents like myself, interweaving stories of other families. I worked closely with my OUP project manager, regularly sharing work in progress and spent twelve months interviewing parents, siblings, clinicians, chaplains and mediators. I observed ethics panels and inquests and read countless court documents and academic papers in order to deliver my manuscript. Writing the book to me to places I had not gone to before and forced me to confront many difficult memories. I worked closely with ethicists, academics and beta readers to ensure that the book would be in the best possible shape to tell the most difficult of stories and take readers into a world that is all too real for so many families.</span></i></p><p><i><span style="color: #2b00fe;"> Unfortunately when it was about to go into production OUP decided not to go ahead with the project. They have worked closely with me however to find a home for it as they still believe in the book and the subject matter, they just don't believe they are the right publisher to do it justice.</span></i></p><p><i><span style="color: #2b00fe;">Since this time I have had countless meetings with publishers and agents all of whom feel that it is an important piece of work but have varying reasons on why they will not take it on. I've heard that it's not commercial enough, that a book about children dying is a difficult sell, that it needs to be more upbeat and have more happy ending case studies and that my writing style is too colloquial.</span></i></p><p><i><span style="color: #2b00fe;">It's been hugely disappointing, especially as so many people have asked me when it will be out. And even more importantly because many parents entrusted me with their stories, stories they had not told to anyone else. They knew I would not let them down in opening up a window do our world.</span></i></p><p><i><span style="color: #2b00fe;">And because of this I won't give up. </span></i></p><p><i><span style="color: #2b00fe;">Some subjects need to be discussed. For those of us who live it, for those wonderful, brave parents who told me their stories, for Daisy, I wont stop. It's a hard read but it's life, this is what happens. W</span></i><i><span style="color: #2b00fe;">e are all one catastrophic event, gene mutation or diagnosis away from our lives changing forever. I'm living proof of that.</span></i></p><p><i><span style="color: #2b00fe;">It cant be sugar coated but we can try and understand and learn. And through learning change things for the better for the families who are just focused on doing anything for their child, even when anything means making the hardest decision you have to make as a parent.</span></i></p><p><i><span style="color: #2b00fe;">( please get in touch via this<a href="https://www.wasthisintheplan.co.uk/p/get-in-touch.html" target="_blank"> blog</a> if you want to know more about Anything for my child)</span></i></p><p><br /></p>Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-50363458019549691472021-12-22T00:30:00.224+00:002021-12-22T00:30:00.221+00:00Anything for my child - book cover reveal<p>It's Daisy's birthday today. She would have been 17, she will be forever 12. Next year it will be five long years since I kissed her goodbye. This time of year is always tough. Remembering her birthday, the moment my life, our family's lives, changed forever.</p><p>This year is extra hard however. I have Covid. Despite a booster vaccine in October I still succumbed and it knocked me off my feet. I have to self-isolate until the 28th. Like many people all over the world, Christmas is going to be a tough one. For me however, the timing could not have been worse.</p><p>My youngest son also tested positive, although his release date is Christmas eve. But in order to prevent it spreading to my eldest daughter I'm spending my days locked away in my office where I've de-camped to see out my isolation time. Any other time of the year this would be manageable but to be alone in one room over the festive period brings back a lot of painful feelings. That first Christmas, just a couple of days after Daisy's arrival we were forced to be apart as a family. Daisy in her incubator in the neonatal unit, I was still recovering from a really difficult pregnancy and delivery stuck in a hospital cubicle. There were no smart phones in those days, no face-timing my other children to see them open their presents on Christmas morning. It's why Christmas is so important to me, I always felt I needed to make up for that first Christmas when we weren't together. That the location didn't matter, just being together was the thing that mattered.</p><p>And of course there are many anniversaries around this time. Last week marked six years since Andy died. That first Christmas without him was tough and we hadn't even had his funeral at that stage. Little did we know that the following year would be Daisy's last Christmas...and so it goes on. </p><p>So I'm drawing on a lot of reserves to keep putting one foot in front of the other this year. Trying to make the best of it. Being stuck in one room, with no chance to go out for a run or just meet up with friends, that's tough. I know I have had years of practice at getting through this sort of thing, but it can still be triggering. Having to go back to that place.</p><p>So that's where I am now, counting the days. Just like we used to count the days down to Daisy's discharge date and freedom.</p><p>However, in other news I wanted to share the reason why this blog has been so quiet this year. All of my creative energy and spare time has been focused on writing my third book. <i>Anything for my child</i> will be published next year by Oxford University Press. Coming in at 95,000 words it's the hardest project I've taken on. I know it's an over-used phrase these days, but it's been an emotional rollercoaster as well as a huge learning journey.</p><p>The book takes a deep dive into the world of parents caring for medically complex children. Exploring their feelings when they find themselves in this situation, whether as a result of an acquired or congenital condition. It looks at the decisions they have to make and the influences on those decisions.</p><p>I've used Daisy's story as the main arc and supported this with interviews with other parents, siblings and professionals who have been involved in caring for children with similarly complex needs. I've reflected on the interplay of factors that affect decision making including questions of medical ethics, appropriate interventions, mediation, faith and social media. And in discussing some recent high-profile cases I've tried to explore how trust and communication can break down between parents and clinicians and what can be done to prevent this happening.</p><p>Ultimately the book is a really emotional journey through the life of a child with medical complexity. How parents have to become both carers and advocates in order to be able to navigate a complex system and make what they consider are the best decisions for their child. It's about human beings, on both sides of the hospital bed, trying to do the right thing in a flawed and complicated system.</p><p>I had the most incredible conversations with a really wide range of people, I read countless journal papers and court transcripts and found myself exploring tangents and areas that I hadn't anticipated when I first set out to write the book. And that was the point. While Daisy's own story and my personal lived experience of the life (and death) of my medically complex child is the basis of the book, I did not want it to be just about my subjective experience. I hope I've done justice to the stories that I was told. Lived experiences from many sides and perspectives.</p><p>So that's why this blog has been so sadly neglected this year. The sheer effort of researching and writing the book, let alone all the admin that then goes with getting it edited and ready to go into production, on top of work and family life, left very little in the tank for anything else.</p><p>It is, of course, dedicated to Daisy and on her birthday I thought I'd share the cover with you. There's a story behind this cover too, nothing I every do comes without some sort of back story.</p><p>Before Covid times I was asked to speak at an auction at Christies on behalf of <a href="https://www.wellchild.org.uk" target="_blank">Wellchild</a>, a charity that supports families caring for children with complex needs. One of Daisy's palliative nurses was a Wellchild nurse so I was obviously delighted to be able to share my own lived experience and help their fundraising. Famous artists had donated works to be auctioned that evening and as I stood up to speak I saw the artwork by <a href="https://www.patrickhughes.co.uk" target="_blank">Patrick Hughes</a> on the wall to my left. </p><p>That picture of the hospital bed with the rainbow escaping through the window just seemed like such a powerful metaphor of life with Daisy. At that point I hadn't even been commissioned to write the book but I mentally filed the image in my mind as one that I'd love for a book cover. When my editor at OUP began to talk about cover artwork I decided to take a chance and contact the artist, explaining a bit about what his picture meant. I was flabbergasted when he responded almost immediately saying he'd be delighted to let me use his piece, Rainbow Bed, for the cover of the book.</p><p><br /></p><p>So here it is, isn't it wonderful?</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhxMrjJNVMmMA8j3ZMgUt4Y_v5JwD6QhqqrgDSs1zPXwHUa6hi4qIXYKo8lIC2vRYh8T_ASadaVdFJ821DXCCOLHGjVHegQM994Oq3MNuxiS9tRPwGgFZjC2O96jRbpEHO96R4k2-J-gosNScxaeptRL6lIgKMy-Vbiu8m4BrbrrnENSspfgRA=s912" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="912" data-original-width="614" height="640" src="https://blogger.googleusercontent.com/img/a/AVvXsEhxMrjJNVMmMA8j3ZMgUt4Y_v5JwD6QhqqrgDSs1zPXwHUa6hi4qIXYKo8lIC2vRYh8T_ASadaVdFJ821DXCCOLHGjVHegQM994Oq3MNuxiS9tRPwGgFZjC2O96jRbpEHO96R4k2-J-gosNScxaeptRL6lIgKMy-Vbiu8m4BrbrrnENSspfgRA=w430-h640" width="430" /></a></div><p><br /></p><p>Like everything in life, Covid has delayed publication but we hope that the book will be available late June next year. I'll share pre-order links as soon as they are available.</p><p>I'm hoping that the Anything for my child will help a wide audience or readers understand the realities of life caring 24/7 for a child who has complex medical needs. A child who is likely to die young. It's aimed at many people; health professionals, social care professionals, parents, in fact anyone who is interested in understanding a little more about what it's like to be propelled into an unexpected parenting journey. I can't promise it's an easy read, even the toughest ethics professors who reviewed the manuscript confessed to shedding a few tears. But that's the reality of our lives and it's important that we are not left in the shadows because our stories are too painful to share.</p><p>So happy birthday Daisy. I won't be able to go to the chapel at Great Ormond Street this year with a birthday card . But I'm grateful to the wonderful chaplaincy team there who will light a candle in her memory today, her light still burns so brightly.</p><p>And me - I'll get through this Covid isolation , yes Christmas will be tough on my own, but I've been through worse.</p><p>I'll try and be better at updating this blog now, there's 13 years worth of posts here already, and many more to be shared in future years.</p>Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com1tag:blogger.com,1999:blog-18079831.post-5698622396125603472021-02-26T00:14:00.018+00:002021-02-26T10:20:54.837+00:00When going to hospital is the only option<p> <span style="font-family: verdana;">Gosh, has it really been four months since I have updated this blog? Like all of us, it's feel like time has gone really quickly, but at the same time, it's plodded along slowly.</span></p><p><span style="font-family: verdana;">We're in lockdown 3 or whatever the official term is in the UK; the PM made an official announcement at the beginning of the week outlining the next steps to eventually take us out of lockdown. I don't watch the official announcements; all I care about is ensuring people are vaccinated. I know the impact of lockdown; I've seen and experienced it first hand, but I also don't want to rush out of it.</span></p><p><span style="font-family: verdana;">My two children who are still in full-time education are zoombies...sitting for hours on end watching lectures, my poor youngest son is training to be a chef via zoom, my eldest daughter is attempting to complete a degree in Film Production virtually.</span></p><p><span style="font-family: verdana;">We are coming to the end of the period of anniversaries; at the end of October, we marked 20 years since my dad died of cancer, then Andy's birthday was in November, then they come thick and fast. Five years since Andy died and just last month, four years since I last kissed my darling Daisy and held her in my arms.</span></p><p><span style="font-family: verdana;">On top of all of this, a beloved family member, the woman I have always called my "sister from another mister" (one of only two women to get his honorary title), died in January. I'm going to write about this separately , but the grief, ontop of grief, has been hard at times, especially because we have had to learn how to grieve during covid times.</span></p><p><span style="font-family: verdana;">So much has come to the surface during this strange, dystopian time, feelings that I didn't anticipate. An ongoing sense of relief that Daisy is not living through this time, guilt at those feelings and reflection on how I would have coped and how my friends, still in the world I left behind after she died, are coping.</span></p><p><span style="font-family: verdana;">I received my first vaccine a week ago.</span></p><p><span style="font-family: verdana;">I was called because I am still a carer. It's not something I really consider; caring for Daisy was caring at a level of magnitude beyond my life now, but there is still no escaping the fact that my two boys are neurodiverse.</span></p><p><span style="font-family: verdana;">Anyone who reads this blog will know that I consider our ability to receive vaccinations to prevent disease a great privilege. And while I was honoured and quite emotional to receive my vaccine, it was an experience tinged with guilt and frustration.</span></p><p><span style="font-family: verdana;">I was fortunate to receive my vaccine yet at the same time I knew that the population dying in greatest numbers from Covid infection have not been prioritised for vaccines.</span></p><p><span style="font-family: verdana;">This <a href="https://www.ft.com/content/bc616b88-0368-43e9-94b7-a715ef456685" target="_blank">feature</a> in the Financial Times sums it up; people with disabilities accounted for 60% of deaths from Covid last year, many of those have a learning disability. <span style="background-color: white;">In the first five weeks of the current lockdown, 65 per cent of deaths among people with learning disabilities were from the virus, according to the NHS.</span></span></p><p><span style="font-family: verdana;">It beggars belief that this group have been ignored, and as always, it's fallen on the those who are able to use their voices to raise awareness and tell the world about the forgotten ones.</span></p><p><span style="font-family: verdana;">Many of you will have heard and seen Jo Whiley speak about her sister Frances this week. Jo wrote the foreword to my book; we know each other and have many things in common, not least the fact that we both care for someone with a learning disability, in Jo's case, her sister Frances.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb7RZLorUKmKAbyGmq5nsL7a6D9iYz9-Gt089lrqS5P3GgwnXRgnvmTJo18nhdvDKrALixNw11vAXl6t4yBaqhMEyM4WZ_L9MaCjm6_Eie4BOZEYEvgJsJ6jy6PyXNMJJN-1CvDA/s600/jowhiley.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="photo of the broadcaster Jo Whiley with her arms around her sister Frances" border="0" data-original-height="600" data-original-width="600" height="434" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb7RZLorUKmKAbyGmq5nsL7a6D9iYz9-Gt089lrqS5P3GgwnXRgnvmTJo18nhdvDKrALixNw11vAXl6t4yBaqhMEyM4WZ_L9MaCjm6_Eie4BOZEYEvgJsJ6jy6PyXNMJJN-1CvDA/w434-h434/jowhiley.jpg" width="434" /></a></div><br /><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">Jo was able to use her profile to let the country know about what is happening under our noses, that people like her sister are not being prioritised for a vaccine despite being at high risk. My friend Sam Carlisle, a fellow writer whose daughter Elvi attends the same school as Daisy, wrote very eloquently about it in this <a href="https://inews.co.uk/opinion/jo-whiley-covid-19-vaccine-learning-disabilities-874778">article</a> for iNews.</span></p><p><span style="font-family: verdana;">And then the worst happened. Jo's sister tested positive for Covid, and very quickly, she became symptomatic, to the point that she needed hospitalisation. Her family's worst fears had materialised, and their nightmare began.</span></p><p><span style="font-family: verdana;">Because the hospital is the worst place when you have a learning disability, and you are anxious, even worse if your oxygen levels are in your boots and people are trying to force a mask on your face.</span></p><p><span style="font-family: verdana;">Jo has spoken about her sister having to be restrained, about nurses struggling to care for Frances, about her poor parents running on empty as they attempted to keep her calm while making the most difficult of decisions in their lives about their precious daughter. I know about that, about not being able to leave my child's side , fearing for her safety if I did take a break and having to have unimaginable conversations with doctors about what could be done.</span></p><p><span style="font-family: verdana;">Thankfully Frances' story has a happy ending. Her super-human strength and determination got her through. I remember so many similar scenarios with Daisy, one minute at death's door, I would be numb with the adrenaline coursing through my body and the next minute she would be sitting up in bed, demanding to go home and go to school - while I would be picking myself up from the floor!</span></p><p><span style="font-family: verdana;">At last, people are waking up to the fact that once again, people with learning disabilities have been ignored. It took Jo's decision to use her profile and share the realities of the impact of the vaccine prioritisation to wake policymakers up. And eventually the the <a href="https://www.bbc.co.uk/news/health-56181154">announcement</a> was made and now people with learning disabilities will be prioritised to receive a vaccine.</span></p><p><span style="font-family: verdana;">But as always, it shouldn't be like this. It shouldn't take a high profile person raising awareness because a dearly loved sister is at death's door to change policy. </span></p><p><span style="font-family: verdana;">Now at least, through hearing Jo openly and honestly share Frances' story that we have a better understanding of why the death rate is higher among people with learning disabilities. </span></p><p><span style="font-family: verdana;">One thing that struck me about Frances' story was the fact that when they arrived that the hospital the only acute nurse for people with learning disabilities was not available. It's great that learning disability nurses exist, and they can make such a difference for a planned admission. But what about an emergency admission? When the person in question is not a regular in the hospital?</span></p><p><span style="font-family: verdana;">Daisy would always bounce in and out of hospital, as regular readers know, so the emergency department kept background notes in a file on the main desk, and her regular patient notes were kept permanently on the children's ward. That helped a bit, but it was down to the staff who knew us day to day and understood how to manage Daisy's behaviour and support me in caring for her , who were best placed to make the reasonable adjustments she needed.</span></p><p><span style="font-family: verdana;">Over the years, things got better with Daisy's care, both through my perseverance in ensuring that staff caring for Daisy understood the impact of her learning disability and because Daisy was such a regular visitor at both our local hospital and at Great Ormond Street that staff got to understand her needs.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiufoVREV4PSs1f2_5BjIpqvNijenJGcfmNZgyRiIoL5Zo4MM0oLqSZs1I1LkcL2iRmMSMLDDfsQZDy7Z6MuOSegr6dnnel5VfG3G0q4I-1LPSvYYYgHpMm2J3ZLt31LjaiDrqySw/s864/12187817_903797956369314_7975021174940408808_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="Photo of Daisy in a hospital bed with Steph in bed cuddling her" border="0" data-original-height="864" data-original-width="864" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiufoVREV4PSs1f2_5BjIpqvNijenJGcfmNZgyRiIoL5Zo4MM0oLqSZs1I1LkcL2iRmMSMLDDfsQZDy7Z6MuOSegr6dnnel5VfG3G0q4I-1LPSvYYYgHpMm2J3ZLt31LjaiDrqySw/w400-h400/12187817_903797956369314_7975021174940408808_n.jpg" width="400" /></a></div><br /><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">One of the best stays we ever had on a ward was a planned admission for a major surgery. The nurse in charge had consulted the learning disability nurse consultant prior to Daisy's admission, and it was agreed that while Daisy was an inpatient, an additional healthcare assistant would be assigned to her alongside the named nurse for the day. This meant I had an extra pair of hands to care for Daisy and someone who could sit with her so that I could take a break (aka - take care of my other children at home!).</span></p><p><span style="font-family: verdana;">A sign was put on Daisy's cubicle door asking people to knock before entering and to check with me first if it was OK to come in. It also informed people that it was best to stand at the end of the bed so that Daisy could see them as her poor peripheral vision meant that she would be scared if she did not realise that someone was approaching her from the side and would be likely to lash out.</span></p><p><span style="font-family: verdana;">I would use social stories and make up photo books with pictures of the hospital and ward prior to a planned hospital admission to help Daisy understand what was going to happen. Social stories are brilliant for children with learning disabilities. I remember taking Daisy for an early ecg when she first started having seizures.</span></p><p><span style="font-family: verdana;">The neurophysiology team had written a social story for a child to understand what to expect when having an ecg. Daisy studied it diligently and was very compliant during the test; I could not understand however, when we were leaving, why she was so agitated, putting the brakes on her wheelchair and refusing to move. Then I remembered, the last bit of the social story involved being given a sticker at the end of the test, and the nurse had forgotten this last vital element!</span></p><p><span style="font-family: verdana;">Play therapists and specialists were also vital in helping Daisy prepare for procedures, bringing dolls with various lines and stomas to explain operations, and taking us for trips to scanning rooms so that Daisy would be able to choose a film to watch while having a scan and wouldn't feel scared seeing the equipment for the first time.</span></p><p><span style="font-family: verdana;">Of course, these are all examples of planned admissions where a child/young person/adult is a regular in hospital. But what about the emergency admissions? Cases like Frances?<br /><br />Most parents/carers of children/adults with a learning disability will confirm that they will do everything in their power to keep their child out of the hospital and keep them at home. So when you end up taking your child to A&E you know it's bad, that there is no other choice and they have to be in the hospital.</span></p><p><span style="font-family: verdana;">And of course, hospital is not home, and it's anxiety-inducing which can lead to challenging behaviour and lack of co-operation and that can make simple treatment, like adminstering oxygen impossible, which then becomes a life-threatening situation.</span></p><p><span style="font-family: verdana;">So what can be done?</span></p><p><span style="font-family: verdana;">Well if you're a nurse or a doctor or a carer then think about the impact of hospital on a scared and sick person who cannot articulate how they feel. All those strange noises, smells, let alone the people asking questions, poking and prodding. You don't have to have training in caring for a person with a learning disability to be able to stand in their shoes and understand the sensory overload and fear. </span></p><p><span style="font-family: verdana;">Think about simple things that may help - reducing light and noise. Minimising questions, the number of people around the bed, ask carers what they need or how to help. These are simple reasonable adjustments that anyone can do.</span></p><p><span style="font-family: verdana;">Then there are other things. Look after the carers so that they can look after the patient. So many times I would be sat, unable to leave Daisy safely but my head pounding from dehydration after hours in A&E or starving or just needing to take a break and collect my thoughts. There were not many times where someone came up to me, unprompted and offered to sit with Daisy so that I could take a break.</span></p><p><span style="font-family: verdana;">The sign on the door was a real breakthrough. Daisy learned to be terrified whenever someone came into the room as that was often associated with something bad about to happen. Knocking and checking if it was OK meant I could then tell Daisy what was about to happen. Explaining on a sign about where to stand when coming in the room meant that many staff were spared the left hook of a child who was startled because she had not seen or heard them approach from the side.</span></p><p><span style="font-family: verdana;">I would often have to remind people not to talk over Daisy or talk about her as if she could not understand - it's obvious isn't it, but it happens all the time.</span></p><p><span style="font-family: verdana;">These are simple adjustments, on their own they won't change the world but they might make things slightly better. I can't solve the problem of how to get a non-compliant, terrified patient to accept an oxygen mask or nasal cannula or to not try and pull out an NG tube or IV line...these are bigger things and maybe if someone sat down and really thought about it, maybe they could come up with a solution.</span></p><p><span style="font-family: verdana;">But the biggest change might come from anyone who finds themselves caring for a person with a learning disability in hospital trying to think about what it feels like to be them at the moment in time....maybe that way we don't need to worry about whether a learning disability nurse is available to advise a team because everyone in the team is able to think about what reasonable adjustments might just help turn that corner.</span></p><p><span style="font-family: verdana;">I'd be really interested to hear feedback from readers who can share some good examples of how reasonable adjustments can positively impact a hospital stay. Please feel free to share and comment below.</span></p><p><br /><span style="font-family: verdana;"><br /></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOPolicgZ-tq1He2X1FJfANQn5hX8mfSwE8YP9QOAibB-nqArIUWRkmr7dSDR9okZ4dvdbZ9giKQTWxuAiqBKihSrqmBQ7rl_T0Xh2L8MfWq9sChVA1-26G9o78NTstNk3-Zmcgg/s960/17424725_1312565812159191_4224944488572779188_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="Black and white photo of Steph lifting Daisy out of a hospital bed taken from the door of the room" border="0" data-original-height="960" data-original-width="640" height="478" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOPolicgZ-tq1He2X1FJfANQn5hX8mfSwE8YP9QOAibB-nqArIUWRkmr7dSDR9okZ4dvdbZ9giKQTWxuAiqBKihSrqmBQ7rl_T0Xh2L8MfWq9sChVA1-26G9o78NTstNk3-Zmcgg/w318-h478/17424725_1312565812159191_4224944488572779188_n.jpg" width="318" /></a></div><p></p><p><br /></p>Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com2tag:blogger.com,1999:blog-18079831.post-46941864467955179582020-10-29T21:45:00.002+00:002020-10-30T10:12:04.165+00:00Life begins at.....<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWGOduRTv3I8MRUXjhLPLmDM4ulwJCViQCfexVAuhaTYurnom5ucJKxZ9xUtK7C2jM-QylJwd-3-EOr2_dP6aBaE49vhkt6XBnqBxwGWM-Rdax5CaiWSykfRNpoA87CG_CWWU_lA/s2048/dominik-lange-VUOiQW4OeLI-unsplash.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1365" data-original-width="2048" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWGOduRTv3I8MRUXjhLPLmDM4ulwJCViQCfexVAuhaTYurnom5ucJKxZ9xUtK7C2jM-QylJwd-3-EOr2_dP6aBaE49vhkt6XBnqBxwGWM-Rdax5CaiWSykfRNpoA87CG_CWWU_lA/w640-h426/dominik-lange-VUOiQW4OeLI-unsplash.jpg" width="640" /></a></div> <p></p><p>When I turned 50 I felt it was a new beginning, a time to look forward, to embrace my new life.</p><p>I was back at work, dipping my toe in online dating and busy with multiple writing and speaking engagements.</p><p>I was creating a new life, meeting new friends, carving out a new path....but things didn't feel right.</p><p>It took me to the point where I was at burnout to realise that in order to face and embrace the future I had to take care of the past.</p><p>I had spent many years caring, worrying about others, dealing with the multitude of curveballs, and challenges that life had put my way that I had lost sight of exactly who I was.</p><p>And now here I was, trying to navigate this new life without really knowing what I wanted from that life, not really know who I was anymore.</p><p>Two years later I feel like it's all a lot more clear, I just needed to give myself time. In order to move forward I needed to understand what had brought me to this point, and I realised that I'd really not done that properly...</p><p>In all the years of caring, of thinking about everyone else and their needs, I'd forgotten about myself. So when I had the chance to think about my future and what I wanted from it, I found I couldn't. Because I hadn't really had that luxury....the time and space to think about who I was and what I wanted from this next chapter in my life.</p><p>We're brought up to believe that being selfish is a bad thing, but perhaps, as carers, we need to be a little selfish occasionally in order to not forget who we are. Caring can become so all-consuming that we lose sight of ourselves....our identity becomes wrapped up in what we do and it's really easy to just lose ourselves in all the constant plate-spinning and tail-chasing.</p><p>I needed to unpick all the layers to remind myself of who I was, before I was a wife, a mother, a carer, an advocate..and then I needed to understand how all of those life experiences had shaped and moulded me so that I could start, at last, to think about what I wanted for myself.</p><p>I often get invited to speak about the role of carers and someone always asks me what advice I would give to carers based on my own personal experience. It's always the same; "don't lose sight of yourself". I don't have all the answers for how you do that, hell I'm just marking two years of intensive therapy just to be able to think about what I want for the next stage of my life. But find a way to be a little more selfish, to reflect on your own needs. Write, paint, talk...find a way to celebrate yourself and remind yourself that all the time you are advocating for your child or loved one, reminding professionals to see the person not the disease, it's important to give yourself the same advice...see the person you are, who you were and who you will be.</p><p>Turning 50 was a transition for me, I entered that new decade thinking that I would be able to flick a switch and begin to move forward, but it's only now, two years in I am starting to feel comfortable in doing that. I no longer feel that I'm flailing around in the ocean, looking for land, I know where I am now and who I am and where I want to go. Most of all I've been kind to myself and given myself time to reflect in order to begin to look forward.</p><p>I can't go back in time and remind myself not to lose sight of myself, but I can use this blog to remind other carers to do so.</p><p>In the midst of all of your caring and giving of yourself, don't lose yourself, you still have hopes and dreams and you are you....please don't ever forget that.</p><p> </p>Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-6054879776940924692020-06-24T09:09:00.006+01:002020-06-24T09:28:05.484+01:00Protecting the herdI just can't help thinking, if Daisy was still alive, what would it be like? How would we have coped - she would have been one of the so-called "shielded ones", those who received a letter at the beginning of lockdown telling them to stay at home for twelve weeks and not venture outside.<div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqcwnjBBDdBZwCERGf9kbzpLLonPfg4tn-dTBr8Xz2nQSFkim7SBBHTK2gg9AfgUbYKKIg4OEZCcbpPeSq-5fUy6b1Mma-OXKlvtBtuX9GHReX3FPJronc-cmPo0xOvQ_K71xZ6g/s960/101099606_10158391530299350_2862396832913293312_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="Picture of Daisy in her wheelchair in the back of her wheelchair van. She is smiling and happy , on her way to school" border="0" data-original-height="960" data-original-width="720" height="500" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqcwnjBBDdBZwCERGf9kbzpLLonPfg4tn-dTBr8Xz2nQSFkim7SBBHTK2gg9AfgUbYKKIg4OEZCcbpPeSq-5fUy6b1Mma-OXKlvtBtuX9GHReX3FPJronc-cmPo0xOvQ_K71xZ6g/w375-h500/101099606_10158391530299350_2862396832913293312_n.jpg" title="Daisy loved trips out in our wheelchair-adapted car" width="375" /></a></div><div><br />
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Her school is closed. She barely went to school in her final year anyway, there were so many problems trying to get nurses able to be with her in school and I was concerned for her safety. So I guess I would have been attempting to home school her. She would have been missing her friends, missing walks in the park, her regular trips to the local shops which she loved so much.</div><div><br /></div><span><a name='more'></a></span><div>Would our night nurses have still been coming in? They looked after other children in other houses...would it be safe for them to come to our house, would they have PPE to protect Daisy from cross-infection?<br />
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And if we didn't have nurses, how the hell would I have coped, 24 hour waking shifts, 7 days a week....<br />
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I would have been torn between the chance to actually have some sleep, weighing it against the risk of having people come to the house to care for Daisy.<br />
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I remember being so bone-tired, living in fear of making a fatal error on the nights we didn't have nurses. Fighting so hard in the year before Daisy died to keep her nursing care package (Daisy couldn't be left with anyone other than IV trained nurses). Slipping out of the house at dawn to run in order to keep my head in a good space, returning just before our nurse finished her night shift (even though I was technically not allowed to leave the house when a nurse was with Daisy).<br />
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How would I have coped during lockdown. How would I have coped shielding this vulnerable little girl with her dodgy airway and immunosuppression from this awful virus? How would I have kept myself sane and rested? How would I have had time for my other children?<br />
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I just don't know how we would have done it, I think about it a lot and I veer from utter sadness that I don't have Daisy with me to a guilty relief that I don't have to face this awful situation. I know there would have been lots of drives out so that she could have a change of scenery and some mental stimulation, I also know there would have been a few smashed ipads and near misses. I'd have leaned heavily and unfairly on my other children to help, I would have been hallucinating with tiredness. And that's before we even consider what would happen if I was running low on syringes or one of the other essentials for doing Daisy's IVs and TPN let alone her catheters. I made so many late night visits to A&E or the children's ward when stocks were running low at home. What if her TPN didn't arrive or the multiple drugs that she needed each week?<br />
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But that's not my reality any more. Bittersweet as it is. I'm torn between missing my girl but absolute relief that I am not having to care for her during this time...<br />
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But it's still the reality for so many of my friends. I keep thinking of them......how are they managing?<br />
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2.2 million people were told to shield at the beginning of the UK lockdown.<br />
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Some people knew they would get the call to shield, some were surprised to receive it. But within my friendship group they have stayed at home, stayed safe, occasionally venturing out late at night when no-one else is around. They have put their heads down and got on with it, knowing that the risks to themselves or the person they cared for were just too great even if it meant sacrificing precious mental health breaks, exercise, sleep even.....<br />
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Years of caring for a sick child or living with a complex disease means my friends know the routine, you do whatever it takes to stay safe and well and out of hospital...consulting with medical teams, using common sense and weighing up the impact of any decision they make and the potential impact it may have.<br />
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The shielded were the forgotten. The people who strictly adhered to lockdown when so many others were being flexible in their interpretation.<br />
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People like the Government Advisor Dominic Cummings. Who drove across the country to visit his elderly parents when he had suspected Covid19. Who went for a drive to a nearby beauty spot while there with his wife and small child in order to "test his eyesight".....who flouted the rules that the government he advises was seeking to enforce.<div><br /></div><div>What an insult to the 2.2 million shielded who were trying to keep safe. The rumblings of anger and discontent were loud.</div><div><br /></div><div>And now the shielded have been told they can leave their homes, meet family (from a social distance).</div><div><br /></div><div>But the response was not excitement. For this population it really is a matter of life or death and the decision to change the shielding guidelines felt as though it hadn't been thought through..... many of my friends turned to their medical teams for guidance, they were just in the dark.</div><div><br /></div><div>The shielded rely on trusted teams to advise them on what is appropriate for their medical needs. Trusted teams and common sense borne out of experience....</div><div><br /></div><div><br /></div><div>Whatever the intention , the fanfare of government spin that accompanied it does not match with the reality of the announcement. People shielding, especially those caring for children with complex needs were already using their own common sense. Going for a drive just for a change of scenery, a late evening walk in quiet streets, getting out to parks early in the morning before there are too many people around or just choosing to wait until they are reassured by their medical teams that it's safe to go out again.</div><div><br /></div><div>People who have conditions that put them in danger of dying from or permanently disabled by Covid19 are not going to take risks with their lives. They look for the science not the spin.</div><div><br /></div><div>What might have appeared a good news story for our government doesn't rest comfortably among people who are were diligently keeping themselves safe while watching people flout the lockdown guidelines.</div><div><br /></div><div>And so now the lockdown rules are easing....places are reopening. All this despite the daily death toll from this horrible, unpredictable virus still being in three figures.</div><div><br /></div><div>Apart from my reasonably controlled asthma, we're not a high risk household anymore. But that doesn't mean we are going to have big meet ups or make long journeys to exercise. I want to hear scientists unanimously tell me that it's safe for all, not just for my low risk family. I want to hear that there are no more deaths from Covid, or that there is a vaccine available to protect people. I want to protect the herd not put people at risk.</div><div><br /></div><div>We are staying at home as much as possible, we're not using public transport, we're socially distancing, and when we go into shops we wear masks and disposable gloves. Much as I'm delighted for the hospitality and entertainment industries that places are starting to re-open , I'm personally going to avoid crowded indoor spaces until I feel it's safe to do so.</div><div><br /></div><div>I come from the world of the shielded and I am privileged to be able to have some more freedom during lockdown but I will always stand by the tenet that a society should be judged on how it treats its most vulnerable.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbmKKYJ0Zn9Xq30xKr6tcPCxIx_Dzvhr_nui8uAjlEbh55WWY0c1E-WvwjLKUtMMRmKEcoF6p1MYKYutNlfoPa0FgTANqYbWtO_rrRpb0KqxUgjnhviZuphyphenhyphenY3m90lX3ccdvx3PQ/s960/100503267_10158359509159350_4105388341497692160_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="375" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbmKKYJ0Zn9Xq30xKr6tcPCxIx_Dzvhr_nui8uAjlEbh55WWY0c1E-WvwjLKUtMMRmKEcoF6p1MYKYutNlfoPa0FgTANqYbWtO_rrRpb0KqxUgjnhviZuphyphenhyphenY3m90lX3ccdvx3PQ/w500-h375/100503267_10158359509159350_4105388341497692160_n.jpg" width="500" /></a></div><div><br /></div><div><br /></div><div>Wear a mask , wash your hands....think of the people who are not able to benefit from our gradual lockdown easing...</div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>
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<br /></div></div>Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0London, UK51.5073509 -0.127758338.724220070603238 -17.7058833 64.29048172939676 17.4503667tag:blogger.com,1999:blog-18079831.post-46745705010293319252020-04-28T22:40:00.000+01:002020-04-28T22:40:37.514+01:00The invisible army<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGC1KOUZNEqIvJ8an371lpple0CvXZdhW-RkkyF16yf2bZg5g4YpzMXFarvEqJ2xBUSC3o_ECqJbfxPStSUIXNZmQX7eoIVkLEfziVJgejjfM7-evt1Zonw_1SleIWIzUBqap6fQ/s1600/georg-arthur-pflueger-eO_JhqabBY0-unsplash.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1067" data-original-width="1600" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGC1KOUZNEqIvJ8an371lpple0CvXZdhW-RkkyF16yf2bZg5g4YpzMXFarvEqJ2xBUSC3o_ECqJbfxPStSUIXNZmQX7eoIVkLEfziVJgejjfM7-evt1Zonw_1SleIWIzUBqap6fQ/s400/georg-arthur-pflueger-eO_JhqabBY0-unsplash.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo credit: George Arthur Plueger @Unsplash</td></tr>
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I was struck by the comments of two friends this week on social media which did more than anything to help me understand the true plight of the staff who are caring for people in residential homes during this pandemic.<br />
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One friend is a doctor in Scotland, she often has to make visits to care homes, it's part of the normal workload of a busy GP . She told me that while staff nursing Covid patients in an ITU are in the front line, the viral load when someone is dying is high, wherever your care facility is. And as we know, now that our government has at long last included care home deaths, a lot of residents are dying.<br />
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My friend then commented that given this situation she sees the staff in care homes working in the same PPE (or less) than she would wear to see someone with appendicitis....gloves, maybe a plastic apron...<br />
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And later that evening another friend posted on twitter that she had been laying awake thinking about the care home staff she had met that day. She is normally a hospital-based palliative care nurse but is part of a special team which certifies deaths in care homes during the pandemic.<br />
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She is seeing first hand what the staff are having to deal with. The nurse in charge of one of the homes she visited that day was 81, vulnerable and high risk herself but a dedicated nurse through and through, putting her life on the line. 25 of the 90 residents in that home were Covid positive and the staff were doing what they could to protect themselves and the other residents.<br />
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<i>These carers are the invisible army.</i><br />
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They work for low pay in residential care homes across the UK, looking after our senior citizens. They get to know them as people, their lives, their stories, their families. And when one of their residents dies they are the last people to see them alive.<br />
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Frontline staff in an ITU don't have time to form these bonds with their patients, not in the same way as carers in residential homes. They are the invisible army and they are as much at the forefront of the pandemic as the staff in hospitals.<br />
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Today the government included the statistics for care home deaths in their overall <a href="https://www.theguardian.com/world/2020/apr/28/uk-records-4343-care-home-coronavirus-deaths-in-a-fortnight" target="_blank">Covid death rates</a>.<br />
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It's harrowing.<br />
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And it puts into perspective how our broken and underfunded social care system is struggling under the burden of the Covid pandemic as thousands die in homes where staff lack equipment and resources to protect themselves and other residents.<br />
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And to know that day in day out there are people risking their own lives with minimal support and protection - it's sobering.<br />
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"<i>What can I do? What can we do?</i>" I asked my friends.<br />
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There is no answer. This is not a problem we can solve but all we can do is show that we see them, we know what they are facing, we feel their pain as a resident they have cared for, often for years, succumbs to this awful virus....<br />
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My GP friend put out a call for donations of snacks for the carers, so that she could drop them off. She knows that on the world scale of things it wont make a difference but it shows that they are seen.<br />
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Maybe when we are thinking about taking cakes and treats to hospital staff we could also include the invisible army facing an impossible task.<br />
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If you make masks or scrubs, maybe drop some off to your nearest residential care home. Or just leave a box of biscuits at the front door, with a note to say "I see you, I appreciate you".<br />
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These are the people who care for our senior citizens, people who deserve better as they care for people in their final days.<br />
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Let's shine a light on them, they deserve so much better.<br />
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<br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-52662442000707270972020-04-24T18:21:00.000+01:002020-04-24T23:24:34.422+01:00Maybe it took Covid19 to open our eyes ?I remember the weeks after Daisy's birth, when she was in the neonatal unit, and the hours turned to days, the days turned to weeks and the weeks turned into months....two long months.<br />
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I remember feeling numb and scared and confused at first and then, I settled into a routine, I went with the flow.<br />
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It was December when Daisy was born, just three days before Christmas. The lights and decorations were up, the weather was dark and stormy and the big tree outside the neonatal unit was bare of leaves.<br />
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By the time she was discharged, two months later, the evenings were slowly getting lighter, there was a sense of impending spring in the air as the first leaves appeared on the tree and the Christmas decorations had been replaced with easter eggs.<br />
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And in a strangely familiar way I've settled into lockdown life. From my previous<a href="https://www.wasthisintheplan.co.uk/2020/03/the-little-things-they-really-are-big.html" target="_blank"> post</a> of feeling as though I was being put back into my gilded cage I now feel very peaceful, I can't change the situation but now I've reframed how I feel about it.<br />
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This is a time to stop, the whole world is on pause, I'm not going to miss anything. It's a bonus extra time with my children, I have often felt guilty about the time I missed with them when they were growing up and I was caring for Daisy, torn between home and hospital, I didn't anticipate this time would come but it has and while it's not always smooth sailing at home with four very strong and very different personalities under one roof, I know I will never have this time them again.<br />
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Yes there is a daily battle about the state of the kitchen and who is going to put the bins out. They seem to sleep an inordinate amount of time and when not sleeping they eat, a lot. I'm trying to juggle work commitments with being with them, and yes, still homeschooling (I still have one in full time compulsory education after all). But we are enjoying family time together, cooking on the barbecue, getting creative about what is available in the shops and planning menus around it. I am learning how to master the playstation (game of choice is COD: Modern Warfare, for such a pacifist I really like to shoot machine guns!), I'm getting to grips with the house admin and paperwork, I'm still managing to do some freelance work, I'm writing, I'm catching up with friends online, as always I'm running - but most importantly I'm resting and enjoying the slower pace of life, the peace...I'm taking time literally and figuratively to smell the roses.<br />
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When this crisis hit my instinct was to go into my default hyper-vigilant mode, to busy myself and to think about what I could do to help. I wanted to be on the frontline, I have skills in this area, I am used to being around very sick people, I was exploring healthcare assistant roles, ward domestic roles...anywhere I could help. But I stopped, because I realised that my kids need me, I don't need to contribute to anymore anxiety by putting myself at risk of exposure to Covid. It's time to be selfish for once and just slow down.<br />
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And it's a good feeling. Having this time. It's allowed me to reflect on the things that I care about, the causes that I talk about .<br />
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I really hope that when this is over things will change. For me the learning has been very personal, that it's OK to slow down, that it's OK to put myself first.<br />
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But for the world I really hope that we take away two things:<br />
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Medicine doesn't have all the answers - this has been the starkest wake-up call for the world. I knew that for years, I knew that the team treating Daisy did not have a magic wand in their back pockets to make her better, to keep her alive until adulthood, I still remember a registrar at Great Ormond Street telling me that "when we get to this level of medical complexity it's all academic guesswork" and I accepted that, I still looked for possible ways we could help Daisy in my quest to leave no stone unturned but ultimately I knew that no matter how brilliant science is, it doesn't have all the answers.<br />
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And this is the world we are facing now, we are forced to peep out from our sanitised view of health and face some stark realities. As you know, I write and speak regularly about the importance of vaccination for healthy communities and to protect the vulnerable. Now, we are all vulnerable, there is no vaccine or treatment for this disease and we are still learning how it impacts different members of our community.<br />
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This is the world where medicine does not have all the answers, were we have to become more self reliant, where we have to think about taking care of ourselves and those around us. This is what the world is like when there is no vaccine to protect us.<br />
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And the other thing that the Covid pandemic has taught us is that we all live finite lives. That death is inevitable and sometimes it visits when we least expect.<br />
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If you read my blog regularly you know this (here's a particularly relevant <a href="https://www.wasthisintheplan.co.uk/2016/05/talking-about-it-doesnt-mean-its-about.html" target="_blank">post</a>). The scale of death and illness that this virus has spread is unspeakable. It breaks my heart that dying people are separated from their loved ones in their final hours, that those left behind can't find solace in a funeral gathering.<br />
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Now more than ever it's important to "get our affairs in order" - that curiously victorian phrase.....now is the time to speak to our loved ones about our wishes, about resuscitation, about funerals, about wills, all those things we put off or think are for people who are dying or older, they are for all of us.<br />
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I know there is so much pressure for those of us to stay at home to use this time productively: bake stuff, make stuff, do zoom fitness, learn a skill....a few years ago that would have been me, hyperbusy to avoid actually thinking about things, now maybe the best thing we can do is to just be calm and reflect and enjoy this time.<br />
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But the most important thing we can use this time to do is to sort out those big things on our to do list that we really have not wanted to do, we ALL need to "get out affairs in order" no matter our age or health status, and this means the following:<br />
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1. Make a will - even more important if you have children under 18, what happens to them if you don't name guardians for them? Do you want to be buried or cremated? Where do you want your ashes scattered? Who is going to end up with your prized collection of gig tickets and festival lanyards?<br />
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2.Write an advance directive. I've written about this <a href="https://www.wasthisintheplan.co.uk/2019/12/make-2020-year-you-write-your-living.html" target="_blank">here</a> . It's about thinking about your wishes should you find yourself in a resuscitation situation or unable to communicate for yourself. It's not just about DNARs (do not attempt active resuscitation) it's also about ensuring you communicate your wishes for full active resuscitation in certain scenarios. This is especially important if you are in a situation where you can't speak for yourself.<br />
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3. Sort out some life insurance if you have dependent children. Without life insurance when Andy died we would have lost our home, the only certainty and stability my children had in their lives, the place where they feel safe.<br />
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4. Think about your digital legacy. This is another thing I've spoken about a lot; what happens to your social media if you die? who knows how to get into your phone contacts, your email, your bank account? Make a list, you don't have to give it to someone but ensure that at least one person knows where it is in case of your unexpected death. Think about legacy contacts for your social media, I still have access to Andy's facebook information because he assigned me as his legacy contact (he also wrote down all of his passwords and log ins before he died), if I did not have this there was a risk of his account being deleted and along with that all the photos and videos and posts that he had made.<br />
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Sadly it's taken Covid19 to open our eyes to these important things, but it's also given us some precious time to pause and reflect and regroup and think about how we want to live our lives when this is all over.<br />
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Right, that's it, I'm off for my daily exercise, of course I don't walk, I run, some things will never change!<br />
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Sending love to all of my lovely friends working on the NHS frontline - stay safe, you are always in my thoughts 🌈<br />
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<br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-18402923923639455222020-03-27T00:13:00.000+00:002020-03-27T00:13:21.500+00:00The little things, they really are the big thingsIt would not be an understatement to say that this time, this strange dystopian time of lockdown and social distancing, has been really tough for me.<br />
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Having cared for a child who was frequently immunosuppressed for twelve years, the concept of social isolation is not a new one. In fact for all of my friends who care for children with complex needs this is not a new situation. Having to stay at home to avoid infection, practicing aseptic non touch technique, meticulously washing hands, keeping germ free....this was our life for so many years. Staring at the four magnolia walls of an NHS hospital cubicle...it was my world.<br />
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This is a picture of Andy, going through chemo, FaceTiming Daisy who was in the next room as he was immunosuppressed and Daisy was colonised with some pretty nasty bacteria. We know all about social isolation to protect the vulnerable here....<br />
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It's felt tough, having tasted freedom after years of cancelled gigs, holidays, wasted food orders....as plans were thrown awry when Daisy became suddenly and unpredictably unwell...it felt like I was going back into my gilded cage. No novelty to it, it's a world I know well.<br />
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I've felt vulnerable and alone, missing Andy as I try and keep my children safe and be the strong adult once again for them, knowing that despite the fact that they are now teenagers/young adults, I am the one they look to. I feel a sense of deja vu as we shut the door and hunker down...this was our life for years... no choice, no freedom, just an institutionalised life of hospitals and unpredictability. <br />
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Yes...the PTSD has reared it's head.<br />
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But I'm in a different place I can't deny it's hard but I'm trying to reframe it all. I am better equipped than most people for this life. After all it's one I know well. And this time, it's all of us, I'm not alone.<br />
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When I speak at conferences I'm often asked what is the one thing I'd like to tell people who have found themselves in circumstances where their lives, like mine, are turned upside down....<br />
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The little things are really the big things......<br />
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Anyone who has heard me speak knows this. That's what life with Daisy taught me.<br />
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I have never ever taken for granted the little things.<br />
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A walk in the park<br />
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Time with my family<br />
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Sitting on the sofa<br />
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Sitting at the dining table<br />
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Food together<br />
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Being together<br />
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The little things<br />
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They really are the big things aren't they?<br />
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That's the one thing I hope we all take away from this time. An appreciation of what we have, not what we don't have. While I struggle to keep my PTSD in check I remind myself of this.<br />
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Even though I've been taken back to a time I remember, even though I miss Andy and Daisy more than ever .....<br />
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The loneliness is hard, the isolation...but it's not forever. <br />
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We'll get our lives back...and maybe by experiencing just a little of the lives that are lived by so many carers and people isolated by chronic illnesses the lives we get back will be more enriched, our eyes opened.<br />
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Most importantly I hope that we will all learn that the little things are really the big things.... take nothing for granted.<br />
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Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-19838438903839045352020-03-26T20:58:00.000+00:002020-03-26T20:58:06.652+00:00Faces behind the fight - LisaI'm going to share some of the faces behind the fight.The people who are working to keep us safe, to counter the threat of Covid19. I keep thinking about all of my lovely friends in the NHS, London Ambulance and emergency services People who kept Daisy, and Andy, safe and well. I feel so helpless....I want to be able to help, so I'm using my platform to share some of the faces behind the fight, people I know who are working to help us during this unprecedented time.<br />
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Say hello to my friend Lisa. <br />
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<div class="text_exposed_root text_exposed" id="id_5e7d167de104a8317444829" style="display: inline; font-family: inherit;">
We were at boarding school together. She's a doctor, an out of hours GP in a busy Edinburgh hospital. When Daisy was dying she was there, on the end of the phone, all night, answering my questions. Now she's on the front line, treating people with suspected Covid19. She's putting her life at risk, night after night,, day after day, being exp<span class="text_exposed_show" style="display: inline; font-family: inherit;">osed to the virus. Her husband is sleeping on the sofa, her kids can't hug her. </span></div>
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<span class="text_exposed_show" style="display: inline; font-family: inherit;">She's there frontlining, treating the sickest, the dying. She doesn't do it for the money, she does it because this is what you do, when you have the skills and experience....she's the kindest, most generous person I know. I want her to be safe but I know if I was fighting for breath at home and the 111 service sent a doctor out to assess me, I'd want it to be Lisa, because she'd fight tooth and nail for me. I</span></div>
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<span class="text_exposed_show" style="display: inline; font-family: inherit;"> stood outside my house and<span> </span><a class="_58cn" data-ft="{"type":104,"tn":"*N"}" href="https://www.facebook.com/hashtag/clappedforcarers?epa=HASHTAG" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration: none;">#ClappedForCarers</a><span> </span>tonight - for Lisa, for the nurses, doctors an carers who supported Daisy and Andy, for everyone who is going through this, for all of us. </span></div>
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<span class="text_exposed_show" style="display: inline; font-family: inherit;">Do your bit, stay at home, flatten the curve, make sure Lisa can hug her kids again, when this is over, please.</span></div>
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Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-10557412239751271672020-03-11T23:51:00.000+00:002020-03-12T00:02:14.179+00:00Is this the wake up call?I was in Dublin last week for a little mini break and I did what every visitor to Dublin does, I went to the Guinness Brewery and took a tour. While I was there I watched a presentation about the Guinness Family, and about Arthur Guinness, and his wife Olivia. They had 21 children, only 10 of them survived to maturity.<br />
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OK, so that's a lot of kids, but the statistics were still the same, without antibiotics, without immunisations, children died, babies died. Death was all around; you just need to visit a cemetery to gain some perspective, you can spot the graves of the people who died in the Spanish flu pandemic in 1918. Now we can vaccinate against common strains of flu, against polio, against measles and so many other diseases....<br />
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We are no longer surrounded by death, modern science sanitised us and saved us, wiped out diseases that once struck fear into the hearts of parents and we have fallen into an easy complacency, confident that modern medicine will have the answers.<br />
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We have come to rely on wellness and on science being able to help, to intervene, to make things better.<br />
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And this is why we are currently paralysed by shock and fear.<br />
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This new mutated virus, Covid 19, a corona virus, has reminded us of our frailty, that medicine is not infallible, that it does not have all the answers.<br />
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Those of us who care or who have cared for the sickest and most vulnerable of our society know that already. We are professionals at hand washing and infection control, the majority of us will take up offers of vaccinations if the person we care for is able to have it, after all why expose them to any further risk?<br />
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We tell people to stay away if they they have a communicable disease, knowing that for the person we care for even a simple cold can end up with a hospital stay.<br />
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This is the reality of thousands, day in day out, forced to self isolate in order to protect their loved one<br />
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And now we have a global pandemic and I see people questioning government and health professional advice, panic buying, confused and complaining.<br />
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So here are some facts as I , as simple lay person who just happens to have a lot of health care experience, understands them.<br />
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Yes Covid is in many cases just like a bad cold. But in some people it's not, in the weak, the immunosuppressed, the vulnerable, it's more than that, it can be fatal.<br />
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This evening I read that there are 900 people in Italy in intensive care, 900 people needing ventilators to breathe. A simple cold to one person is a death sentence to another .<br />
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And because this virus has never been seen before and therefore there is no herd immunity, that's why if we suspect we may have it, we need to self isolate, to protect others.<br />
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It's not for ourselves, if we are strong and healthy, hopefully we won't need hospital care. But it's for those who are not, for those who can't fight it. It's about them not us, it's about protecting the most vulnerable of our citizens.<br />
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And those who care for them and those we rely on to care for us.<br />
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If we are ill we expect doctors and nurses to be there, but what if they are ill?<br />
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And this is why I support vaccination....this is what our world would be like if we did not have vaccinations, only multiple times worse. We are seeing deaths from Covid 19 and are shocked. This is the reality when we don't have immunity to a virus.<br />
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So what can you do?<br />
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From where I sit , I am now in a position of privilege. For 12 years I cared for a very fragile child who spent a lot of her time bouncing in and out of hospital, susceptible to infection, especially in her final years. I spent a year caring for her daddy as his immune system was wiped out by chemo. I needed to be well to care for them and keep them safe. If I was in that situation now I would put our house on lock down. But to know that the less vulnerable people in our community were able to protect me and my family, that's what I would have needed.<br />
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So look around, who lives nearby who may be at risk, for whom contracting Covid 19 will be far worse than "just a simple cold". Minimise your risk of spread by meticulous hand-washing - why does it take this pandemic to hammer this home? Didn't we talk about this when there was a lot of scaremongering about MRSA and Cdiff...hand-washing was and will always be a simple precaution that we should all do, pandemic or not, to prevent cross infection and protect the vulnerable. Those of us who care for the vulnerable know that.<br />
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And the other thing, if you are shopping and stock piling, why not buy for two? Stop being selfish, think about the people who are genuinely in need, knock on their door, ask them if they need anything, deliver a bag of groceries.<br />
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If you have ever posted a "be more kind" meme then this is your chance to put it into action. Get to know the members of our society who are more vulnerable, less privileged and help them, protect them.<br />
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Oh and lastly, maybe, just maybe, this is the wake up call you need if you have ever wavered , that vaccines are a good thing , they protect the weak and vulnerable....this is a glimpse into a world where vaccines didn't exist, where people died where parents lived in fear....do you really want to return to that world?<br />
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This is our wake up call.<br />
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<br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-44742627376166028262020-01-30T21:34:00.002+00:002020-01-30T21:34:28.184+00:00What's your grief<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">This is the last ever picture I shared of Daisy before she died. It's the day before she died, she was deteriorating but had not reached crisis and the point of no return. I had asked for a visit from one of the hospital's Pets as Therapy dogs as Daisy was so sad and missing home and really missing her dog. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">This visit was a stop gap, I had plans in place to bring her beloved dog Pluto to the hospital to meet her, by hook or by crook, at the hospital entrance so that they could be together and he could hopefully cheer her up, she was asking for him constantly.....</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The visit from Pluto never happened....24 hours after this picture was taken, Daisy had taken her last breath...</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">And this picture makes me sad, because it's a reminder of that last promise that I was not able to keep. All she wanted was to go home, and most of all to see her dog who she loved so much.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I know I did everything possible during Daisy's life to make her happy. I fought to ensure that she was seen as a little girl and spent as much time as possible doing the things she loved. I advocated for her to get her the support she needed, I trained to administer the most complex of regimens to keep her out of hospital....I know I did everything for her....</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">....but grief can cloud your rational brain.....</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Tonight it's three years since that picture was taken, it's the night before the third anniversary of Daisy's death and seeing that picture made me sad. Sad that despite everything else I had done, I didn't do that one last thing for her, even though I know events took over, even though my rational brain is screaming that I'm wrong, I still feel sad.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Grief is a bitch.....it really is. Those five stages of grief that we are supposed to move through: <span style="background-color: white; color: #222222;">denial</span><span style="background-color: white; color: #222222;">, </span><span style="background-color: white; color: #222222;">anger</span><span style="background-color: white; color: #222222;">, </span><span style="background-color: white; color: #222222;">bargaining</span><span style="background-color: white; color: #222222;">, </span><span style="background-color: white; color: #222222;">depression</span><span style="background-color: white; color: #222222;"> and </span><span style="background-color: white; color: #222222;">acceptance</span><span style="background-color: white; color: #222222;"> , I can confirm that grief isn't like that.</span></span></div>
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<span style="background-color: white; color: #222222;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Grief makes you think in an irrational way, it makes you lose logic and reasoning. And then when you think you've got the better of it, it comes back, through a smell, a sound, a taste, a touch, a photograph....and you are right back in the moment.</span></span></div>
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<span style="background-color: white; color: #222222;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I have learned a lot about grief over the years. It affects us all so differently. It isn't always the keening women at a wake, or the tears and widows weeds. For me it's been channelled into doing, into making meaning of all of the things that have happened to me. Keeping memories alive and using my experience to help others.</span></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Grief doesn't have a pattern or a predictability, it isn't a stereotype. It's something I carry with me, always. And it doesn't make me a sad person. Well sometimes it does, when something unexpected hits me , out of the blue, like this photograph. And then, very privately I allow my tears to fall.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Despite my decision to share so much of my life with Daisy through this blog I am actually very private, my grief is mine. It's my burden to carry. And I will always carry it, tucked away inside me, it's a part of me that will always be there. It waxes and wanes....</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The anniversaries are the hard times and time, while it lessens the intensity, doesn't heal. Three years since that last time I held Daisy, I live every moment leading up to it, like it was yesterday, I allow my grief to surface and to take me back to that place....I need to do it, I need to connect with my daughter, I need to remember....I'm scared to forget.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I am scared that if I don't feel it that she will slip away and the umbilical connection I have with her will be finally severed...and I'm not ready for that yet.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I'll tgo back to the hospital tomorrow, to the chapel where we held her wonderful memorial service. I'll go to the place where the big book is kept, every day the page is turned and tomorrow it will be January 31st , and I will see her name inscribed in the book....the day she died.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I'll have a cry and a moment of reflection. Then I'll tuck my grief back deep inside me, living with me always. My life, my grief.</span></div>
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<br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com2tag:blogger.com,1999:blog-18079831.post-20349124284121075652019-12-30T23:30:00.001+00:002019-12-30T23:30:10.562+00:00Make 2020 the year you write your Living WillI love lists. Ask my children. There are lists everywhere in the house. On the blackboard in the kitchen, on the whiteboard in my office. Christmas sends me into list frenzy and our family group chat goes into warp drive as I share my to do lists with the kids.<br />
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I end my work day with a list in my project book and every year I write down the things I'd like to achieve. Not resolutions, but things I'd like to do....like the cycling holiday to Jordan I've just booked, it's been on my list for a while....<br />
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But, because I'm a woman of contradictions, I'm a procrastinator too, and sometimes things stay on my list for a while...I know I need to do it...updating this blog has been on the list for while ...along with the great big elephant in the room.<br />
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I need to write my Advance Decision document.<br />
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These days much of my time is spent talking to people about talking. About having difficult conversations, about sharing plans and opening up and talking about the most taboo of subjects...death and dying.<br />
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I share openly my own experience of caring for my life limited daughter Daisy, making plans and discussing with her palliative team how far we would go with medical interventions. Similarly I talk about how we dealt with my husband, Andy's, terminal cancer diagnosis and how we prepared for life after he died, how he made me the legacy contact for his social media accounts and shared his passwords for his bank accounts...how we spoke about his wishes for end of life and medical intervention.<br />
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And I share how I was able to give both my daughter and my husband a good death; advocating for them at the end, knowing that we had discussed end of life plans. And despite Daisy's death being medicalised how I felt that at the end I made the right decisions for her and how I brought Andy home with the support of the palliative team for his final days......<br />
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I've altered my will as our circumstances changed, I've sorted out life insurance and I've discussed what sort of funeral I want with my children and which undertaker to use . I've made my eldest son my social media legacy contact and he has the passwords to access my digital life...<br />
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But what I haven't done, what I know I need to do, is formalised my wishes for end of life care.<br />
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Why should I? It's not like I'm going to die anytime soon after all?<br />
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At this point I refer you to the title of my blog, because I know more than most that life can have an uncanny habit of throwing you off course, who knows what it has in store?<br />
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Celia and Jenny Kitzinger are sisters who, like me, also have a vested interested in encouraging people to open up and talk about death and dying. We have found ourselves speaking at the same conferences and through them I have got to know the story of their sister, Polly.<br />
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Polly was a similar age to me when she was involved in a terrible car accident which left her with devastating brain injuries. The family knew from conversations they had with Polly before the accident that she would have preferred not to have had the medical interventions that kept her alive, initially in a persistent vegetative state and subsequently in a minimally conscious state . The family told the doctors who were caring for their sister that she would not want life-prolonging treatment but despite showing evidence through Polly's writing and letters that she would not want to be kept artificially alive, the doctors persisted with treatment. And 10 years later Polly still needs 24/7 care and it's unlikely that she will ever be able to make a decision for herself again.<br />
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Jenny and Celia have campaigned tirelessly to open up the conversations about the need for everyone to make an advance decision and to communicate it. In fact medical professionals are expected to talk to family and friends in order to make a "best interests" decision but it really becomes a lot simpler if there is an advance decision document in place, because it's something that you have thought of, when you had the mental capacity to do so, and most importantly, it's legally binding.<br />
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Because just telling your spouse, next of kin, friend to "switch off my life support if the worst happens" isn't as easy as you think, as Polly's case illustrates.<br />
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Until I had met Jenny and Celia I had always assumed that an advance decision or "living will" was something for older people, something that I should discuss at some point with my parents, along with who was going to be the lucky recipient of an extensive collection of crystal vases and seaside mementos. But now I know (as I should have realised) that everyone over 18 should write an advance directive if they have strong opinions about what they do or don't want to happen to them should the worst happen and they cannot speak for themselves.<br />
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I was lucky, cancer gave Andy and I time to discuss things, make plans , to think about resuscitation and end of life care but a sudden devastating event; a car crash, a stroke , doesn't give you that luxury.<br />
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So sorting out my advance decision document and getting it witnessed has been on my to do list all year. Not long after hearing the Kitzinger's speak for the first time I was involved in a minor accident that left me with concussion and the realisation that I was actually not infallible or immortal, none of us are. The only guarantee we have in life is death after all.<br />
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So, what is an Advance decision and how do I make it?<br />
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It lets your healthcare team know your wishes if you are not able to communicate them. It's a legally binding document and informs your family, friends and the medical team with your wishes for refusing treatment if you're unable to make or communicate those decisions yourself. You can find out more information about Advance decisions <a href="https://www.nhs.uk/conditions/end-of-life-care/advance-decision-to-refuse-treatment/" target="_blank">here</a>.<br />
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Creating an Advance decision takes time, it involves difficult conversations with family members, and the need to really think about what you do and do not want for your end of life care. I think that's why I've been procrastinating so much, it involves me going to a place that I encourage everyone else to go to, to think about my mortality and ultimately what for me constitutes a good quality of life.<br />
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<a href="https://compassionindying.org.uk/" target="_blank">Compassion in Dying</a> have an excellent form on their website which guides you through everything that you would need to consider in drawing up the document and what to do once you have written it.<br />
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It's all relative, there are no rights or wrongs, no judgements, it's just about planning ahead and ultimately making things easier for those who are going to have to make decisions on your behalf should you for any reason not have the mental capacity to do so.<br />
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It's not something I will enjoy doing and hopefully it's a document that won't ever be used (but I will definitely be revisiting it to make sure it's still what I want) but it's got to be worth a few hours of my time. If the worst did ever happen to me I would want to know that my kids have some guidance from me to carry out my wishes.<br />
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So if you are making a list for things you would like to achieve in 2020 here's my suggestions:<br />
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1. Sort out your legacy contacts and passwords for your digital/social media accounts<br />
2. If you have children who are still in education or you have outstanding debts sort out life insurance<br />
3. Write your will<br />
4. Discuss your funeral wishes with your family<br />
5. Fire up the <a href="https://mydecisions.org.uk/?utm_source=newhomepagebutton" target="_blank">Compassion in Dying </a>website and sort out your Advance Decision (Living Will)<br />
6. Decide who will be receiving the collection of whimsical figurines that you have been amassing since childhood.... (OK, this one's not obligatory).<br />
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Wishing you a procrastination-free 2020<br />
<br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-9447671038276311272019-11-25T16:56:00.001+00:002019-11-25T16:59:27.954+00:00Hospice UK Conference TalkLast Friday I was honoured to be invited to speak at the Hospice UK conference in Liverpool. I was interviewed by Tracey Bleakely, their CEO and the result is nearly forty minutes of video covering everything from life adjusting to caring for a disabled child, paediatric palliative care, end of life planning , supporting young carers, anticipatory grief and grief.<br />
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I think the interview gives some really useful insights to health professionals, carers, parents and anyone interested in knowing what it's like to have to suddenly change your life when things don't go according to plan!<br />
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Please share the <a href="https://www.pscp.tv/hospiceuk/1MYGNPjVVWLxw" target="_blank">link</a> with anyone you think might be interested.<br />
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And thank you to Hospice UK for inviting me to such a brilliant event!<br />
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<a href="https://www.pscp.tv/hospiceuk/1MYGNPjVVWLxw" target="_blank">Hospice UK Interview</a></div>
Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-75024111159924604192019-10-11T22:22:00.000+01:002019-10-11T22:40:35.704+01:00My speech to the Institute of Medical EthicsA few weeks ago I was invited to deliver a memorial lecture at the Institute of Medical Ethics.<br />
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For the benefit of those who were unable to attend, here it is:<br />
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<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">In January 2017 my daughter
Daisy was admitted onto the intensive-care unit at Great Ormond Street for the
last time.<span style="mso-spacerun: yes;"> </span>She was put on a ventilator
and it was clear that she was septic and her organs were beginning to shut
down.<span style="mso-spacerun: yes;"> </span>She had a cardiac arrest as the
physio therapist performed a bronchial lavage in an attempt to identify the bug
that was causing such havoc.<span style="mso-spacerun: yes;"> </span>I walked in
on the crash team working on her.<span style="mso-spacerun: yes;"> </span></span></span></h4>
<h4>
<span style="font-family: Arial, Helvetica, sans-serif; font-weight: normal;">It is
possibly the worst thing I have ever seen, my little girl, just a few weeks
past her 12</span><sup style="font-family: Arial, Helvetica, sans-serif; font-weight: normal;">th</sup><span style="font-family: Arial, Helvetica, sans-serif; font-weight: normal;"> birthday, limp like a rag doll as the crash team
performed CPR.</span><span style="font-family: Arial, Helvetica, sans-serif; font-weight: normal;"> </span><span style="font-family: Arial, Helvetica, sans-serif; font-weight: normal;">They brought her back but
it was clear that this time, unlike all the other times, Daisy was not going to
leave PICU.</span><span style="font-family: Arial, Helvetica, sans-serif; font-weight: normal;"> </span><span style="font-family: Arial, Helvetica, sans-serif; font-weight: normal;">Doctors and nurses worked on
her constantly.</span><span style="font-family: Arial, Helvetica, sans-serif; font-weight: normal;"> </span><span style="font-family: Arial, Helvetica, sans-serif; font-weight: normal;">The consultant took me
to one side and told me what I already knew, the Daisy I knew would never come
back, there were options, they could start dialysis, they could keep
resuscitating but the outcome would be the same, all it would do was buy time.</span><span style="font-family: Arial, Helvetica, sans-serif; font-weight: normal;"> </span><span style="font-family: Arial, Helvetica, sans-serif; font-weight: normal;">I already knew the answer.</span></h4>
<h4>
<a name='more'></a><span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;"><br />“Let her go” I said “it’s her
time”<br />I asked the team caring for
Daisy to just keep her heart going long enough for her brothers and sisters to
get to her bedside so that they too would know we had done everything possible
and they could say their last goodbyes.<br /> <br />I also asked if it would be
possible to move her home for a compassionate extubation or failing that the
hospice but I was told she was too unstable to move and it would be safer to do
it on the ward.<br />So, once my children had said
their goodbyes I nodded to the intensivist and the machines were switched off,
the breathing tube taken out, Daisy took two breaths and she was gone.<span style="mso-spacerun: yes;"> </span>I climbed into her bed for one last cuddle
and kissed my darling girl goodbye.<br />On the other side of the ward
was another child for whom there was also no hope, he had an incurable, life
threatening degenerative disease too.<span style="mso-spacerun: yes;">
</span>His parents were beginning what ended up being a very public conflict
with the team treating their son and they refused to stop mechanical ventilation
without further investigations…</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">His name was Charlie Gard</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">What is it that lead me to
know that it was time to let my daughter go, to give her a good death? Why did I know that I had truly left no stone unturned whereas another set of parents of a terminally ill child were prepared to explore every possible avenue to extend their child's life?<span style="mso-spacerun: yes;"> </span>To the point that they were prepared to go to
court, to put their story out in public, to expose their entire lives to the
examination of the media and social media?<br />Hopefully telling you my
story will explain a little about how I was able to make the decisions I made in
what is just the most difficult of circumstances.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">Daisy was born in December
2004, a much wanted 4<sup>th</sup> child.<span style="mso-spacerun: yes;">
</span>She was premature and soon afterwards diagnosed with a rare genetic
disease.<span style="mso-spacerun: yes;"> </span>The doctors were unsure about
her prognosis and could not even say if she would live to reach her 4<sup>th</sup>
birthday.<br />Looking back on that time
several things happened that were clear tipping points in my attitude to the
HCPs caring for my daughter and decisions I would make for her.<br />Very early on Daisy’s
neonatologist, Ruth, became one of the most trusted people on Daisy’s team.<span style="mso-spacerun: yes;"> </span>She was a similar age to me, with children of
a similar age.<span style="mso-spacerun: yes;"> </span>One day she took me into
a side room for a chat, away from the ward, over a cup of coffee, I felt that I
was talking to another mum who understood me.<span style="mso-spacerun: yes;">
</span>She said that she did not know what was going on with Daisy but she
would ensure that we all worked together to find out.<span style="mso-spacerun: yes;"> </span>The fact that she didn’t have the answers
didn’t matter, the most important thing was that she didn’t give me false hope.<span style="mso-spacerun: yes;"> </span>She also regularly updated my GP.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">The geneticist came in and
the meeting with her couldn’t have been more different.<span style="mso-spacerun: yes;"> </span>It was held on an open ward, where other
parents could hear, she told me my daughter might have something called
Costello Syndrome but as at the time there was no test we would have to wait
and see but she would send me info.<span style="mso-spacerun: yes;"> </span>And
she left.<span style="mso-spacerun: yes;"> </span>And I was left to google
Costello Syndrome as info didn’t arrive, finding myself looking at all sorts of worrying and scary information and crying my eyes out.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">A few months after Daisy left
the neo-natal unit and once she had already make what was to become a life-long
acquaintance with GOSH, we received a letter.<span style="mso-spacerun: yes;">
</span>Ruth had referred us for hospice support and we had been accepted.<span style="mso-spacerun: yes;"> </span>She had framed it not that Daisy was going to
die but that we needed help to optimise her quality of life, we grabbed the
offer with both hands.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">The years went on and Daisy
kept defying the odds, she spent her first birthday in hospital but was out for
New Year and we had our fair share of blue light rides.<span style="mso-spacerun: yes;"> </span>But in between we were able to get on with
life as a family as Daisy slowly hit milestones and continued to surprise us.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">The turning point came in
late 2008, she was taken into hospital for what ended up being nearly a year
long stay, ricocheting between GOSH and the local.<span style="mso-spacerun: yes;"> </span>When she did come home she was TPN dependent
and with a diagnosis of intestinal failure.<span style="mso-spacerun: yes;">
</span>Now we knew the clock was ticking but life was still good.<span style="mso-spacerun: yes;"> </span>We managed with the TPN and we still were
able to do a lot.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">However, it was clear that
Daisy’s health was on a downward trajectory and she was needing more and more
interventions and surgeries.<span style="mso-spacerun: yes;"> </span>We were
referred to the hospital palliative care team but again this was done very
well.<span style="mso-spacerun: yes;"> </span>It was explained that while we
were certainly not at Daisy’s end of life she needed support to manage the
complex symptoms in order to improve her quality of life.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">The Palliative consultant
help to sort out the polypharmacy that Daisy was now under, her drug chart had
grown to seven pages and just administering IVs and infusions was a full time
job.<span style="mso-spacerun: yes;"> </span>Daisy had developed epilepsy and he
had multiple catheters and stomas: ileo, double lumen hickman, gastro, jejunostomy,
mitrofanoff…. but working with her teams we focused on keeping Daisy out of hospital
and able to do the things she wanted.<span style="mso-spacerun: yes;">
</span>Even though on paper her outlook appeared dire the reality was she
embraced life with both hands.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">We knew that this was not sustainable and we
had conversations about end of life plans, discussions around compassionate extubations,
how far we would go, all of these things before she hit crisis.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">But our family was hit by
another crisis.<span style="mso-spacerun: yes;"> </span>In late 2014 my husband
became very ill, very quickly.<span style="mso-spacerun: yes;"> </span>He was diagnosed with stage 4, incurable colorectal cancer.<br />Now alongside my three
healthy children, I was caring for my very complicated youngest child and a
terminally ill husband.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">In many ways Daisy taught us
a huge amount about the importance of difficult conversations, how to talk
about death and dying, how to work with medical teams collaboratively and what
constitutes a quality of life.<span style="mso-spacerun: yes;"> </span>For us
this was never about the big things, or bucket lists, it was always about the
simple things, being able to be home together as a family, sharing a meal,
sitting on the sofa.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">This was the attitude that helped
us adapt to Andy’s illness.<span style="mso-spacerun: yes;"> </span>We asked
lots of questions, we wanted to know our options, in the same way that we did
with Daisy.<span style="mso-spacerun: yes;"> </span>We were Daisy’s advocates,
we had to hope we were representing her best interests and speaking on her
behalf while trying as best as a parent can to be objective, but Andy was able
to speak for himself….in many ways it helped us understand our role in
supporting Daisy too.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">After a gruelling year of
intense and brutal chemotherapy and radiotherapy we were told that there was nothing
else that could be done and Andy had a matter of weeks left.<span style="mso-spacerun: yes;"> </span>He was referred to the palliative
consultant.<span style="mso-spacerun: yes;"> </span>I wonder if the palliative
consultant was shocked by our questioning, we had been working with a
palliative team for many years by that point.<span style="mso-spacerun: yes;">
</span>Andy needed facts and he needed to discuss what would happen at the
end.<span style="mso-spacerun: yes;"> </span>We discussed DNAR and where he
wanted to die. A glimmer of hope was offered with a new treatment but it would
only buy a few more weeks and Andy was too unwell, we knew that any further
treatment would be futile and would only prolong the inevitable.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">Andy died at home a week
before Daisy’s 11<sup>th</sup> birthday and only a few days after his 53<sup>rd</sup>
birthday.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">That year following Andy’s
death was so tough.<span style="mso-spacerun: yes;"> </span>I was on my knees
supporting my grieving children and caring for an increasingly complex little
girl who was clearly failing herself.<br />Her 12<sup>th</sup> Birthday
was difficult, Daisy was in a lot of pain and struggled to be out and about,
something she used to relish.<span style="mso-spacerun: yes;"> </span>I
reflected over that Christmas about where we were with her.<br />By this stage she was on 24/7
TPN, all drugs were administered intravenously and this could take up a large
proportion of the day, her catheters were permanently colonised with bugs, her
epilepsy was increasingly drug resistant and the seizures had clearly damaged
her brain and causing challenging behaviour.<span style="mso-spacerun: yes;">
</span>She had undergone many many huge surgeries, all focused on taking things
away, her large bowel, a chunk of her small bowel, moving stomas, clearing
blockages and adhesions…her body was criss-crossed with the scars.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">There had been a time where
we had hoped for a new treatment that might have halted the progression of her
disease.<span style="mso-spacerun: yes;"> </span>We knew that a lot was going on
in the US and we even made contact with doctors out there, just as the Gard
family had.<span style="mso-spacerun: yes;"> </span>We discussed the possibility
of a small bowel transplant but accepted that she would never been accepted
onto the transplant list as she just had too many other co-morbidities and risk
factors in place.<span style="mso-spacerun: yes;"> </span>Ultimately we weighed
all of our decisions against what would give Daisy the best quality of life,
did we want to put her through some traumatic treatment or procedure if it
didn’t help her stay at home and do the things she loved?<span style="mso-spacerun: yes;"> </span>Go to school, play with her dog, see her siblings?</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">It was hard having to be her
advocate, having to make those decisions but in many ways I was lucky, I was an
experienced parent, I had three older children already, I am educated, I was
never phased in my interactions with senior medical staff having held senior
roles in blue chip firms in a previous life.<span style="mso-spacerun: yes;">
</span>Much as it was incredibly difficult I was able to try and bring down the
emotional shutters, stand back and look objectively at the situation.<br />I had disagreements with
medical staff but I also knew that collaborative working was going to give us
the best outcome so I built strong relationships with HCPs I knew I could trust
and could help advocate alongside me; our palliative consultant, our GP, Ruth…<br />I had been given the hardest
job in the world, to advocate for and make decisions on behalf of a child, my child,
hoping that I was doing the right thing.<span style="mso-spacerun: yes;">
</span>I knew I had to put my own feelings to one side and take hers into
account.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">That Christmas in 2016 I
looked at Daisy and wondered where we were going, her quality of life window
was closing, the time she was able to enjoy herself diminishing as she spent
more time in bed and unable to leave the house.<span style="mso-spacerun: yes;">
</span>She was clearly not at end of life but she was not having the quality of
life we had fought for.<span style="mso-spacerun: yes;"> </span>Was I playing
god every day when I put her TPN up and administered all of her drugs? Yet she
had some quality of life, and while there was no hope she would get better who
was to say if she would get worse, she could be like this for a long time.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">I struggled with those
thoughts, watching my daughter deteriorate, Andy’s deterioration had been fast
and predictable, Daisy’s, like many children with complex and life limiting
conditions was circuitous and very much unpredictable.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">I remember a junior doctor
once commenting that when you got to this level of complexity it was all
academic guesswork.<span style="mso-spacerun: yes;"> </span>The only known was
the outcome, she would die, we did not know where when or how but the way she
was deteriorating she would not be reaching adulthood.<span style="mso-spacerun: yes;"> </span>I struggled about how much we were
intervening to keep her alive…after all if we just stopped TPN she would die and
wouldn’t that be kinder yet the time was not right to do that.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">Daisy, being Daisy took
things into her own hands. Not long after new year I took her to our local as I
was not happy with how she was doing.<span style="mso-spacerun: yes;">
</span>Like most parents caring for children with complex needs I had a unique Spidey
sense that things were not right….<br />She was transferred to GOSH
and deteriorated very rapidly.<span style="mso-spacerun: yes;"> </span>Nothing
worked, fluid resus, sodium bicarb infusions, blood transfusions…she was taken
into intensive care and she died on January 31 2017.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">Afterwards I felt overwhelmed
with a myriad of emotions, sadness, loss, relief…but I stand firm that the most
selfless thing I have ever done in my life was to make the decision to let my
child go.<span style="mso-spacerun: yes;"> </span>Even though my arms still ache
for one last cuddle I knew it was her time and I knew the time was right.</span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">In the end I know we gave
Daisy a good death.<span style="mso-spacerun: yes;"> </span>And we gave her a
good life, every decision was tough but it was measured in terms of her quality
of life and what that meant and I tried my utmost to be objective and be her
advocate. I know that some of the
conversations and support we received along the way really helped us do that;
knowing that the HCPs working with us were humans to and were willing to share
their emotions helped.<span style="mso-spacerun: yes;"> </span>Knowing that they
didn’t have all the answers didn’t give us false hope.<br /> <br />I know that I was lucky to
use my privilege and skills to get to that point.<span style="mso-spacerun: yes;"> </span>Like the Gards I used social media, I started
writing a blog in 2008 when Daisy first deteriorated, but I only ever posted
very curated content on the social media channels, I learned to only trust
information from verifiable sources about potential treatments and I learned
that to fully support Daisy I needed to work collaboratively with our teams.<span style="mso-spacerun: yes;"> </span></span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">It was not always easy but I know that when
it came to the end, like so many other parents, I did everything possible for
my little girl.</span></span><br /><br /></h4>
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<!--EndFragment--><br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-51174824095785032422019-08-28T15:33:00.000+01:002019-08-28T15:33:12.844+01:00A Family Reunion<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSc7KzSQxREeyaxBzCMyxLGyRrZfPJv0yGYHF0xOnMT-0n7huCvk_eUdHYAFqw2wX2EpakarYhobn_hfqGhux7tTT5CL2gOzyfoVpkOEupxcHPuOecW4G29p29QkgRTVb0pDxP3Q/s1600/IMG_5436.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSc7KzSQxREeyaxBzCMyxLGyRrZfPJv0yGYHF0xOnMT-0n7huCvk_eUdHYAFqw2wX2EpakarYhobn_hfqGhux7tTT5CL2gOzyfoVpkOEupxcHPuOecW4G29p29QkgRTVb0pDxP3Q/s400/IMG_5436.HEIC" width="400" /></a></div>
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"Find your tribe", it's the advice I give the many parents of children with additional needs who contact me. It doesn't matter if you child has a confirmed diagnosis, you need to find people who "get it", who understand what it's like to live 24/7 with a child who has taken you for a ride on the extreme parenting roller coaster.<br />
<br />
We were lucky (I'm ever the optimist), Daisy received a confirmed diagnosis of Costello Syndrome when she was 6 months old. At the time she was one of the first children in the world to be tested for the sporadic mutation on the hras gene which causes the syndrome, at the time we were told that it was so sporadic the chances of having a child with Costello Syndrome were 1:1.25million.<br />
<a name='more'></a><br />
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I found myself on google and came across the Costello Syndrome Support group, and I found my tribe. I found pictures of children and young people who looked like Daisy, so much so that it was as if they were cousins. Which is what they are, children and young people united by a common dna, slightly flawed on one minute strand, that gave them similar characteristics, a familial resemblance.<br />
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It was great to chat to other parents, even though it was clear that Daisy was re-writing the book about the progression of Costello Syndrome. That was tough, seeing other children growing out of feeding issues, responding to surgeries, developing in the Costello Syndrome way while Daisy didn't seem to follow the norm. But despite that to know that there were other children who looked like Daisy was comforting.<br />
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In 2007, the year before Daisy started to really deteriorate and develop total intenstinal failure, we managed to get out to the biannual Costello Syndrome family conference in Portland, Oregon. It really was a family reunion, not just for Daisy to see other children who looked like her, but also for her siblings to meet other siblings. It was just so wonderful to be with lots of families, from all over the world, all caring for children and young people with the same beautiful big smiles, funny hands, curly hair and strong as an ox in the face of adversity constitutions as our own little girl.<br />
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I remember when we were first told that Daisy might have Costello Syndrome, looking in disbelief at the pictures I found on the internet, there was no way that my child could look like that. But among the many, many things Daisy taught me was to see the child not the condition, when I was in Portland I didn't see children with dysmorphic features, the horrible term used by the geneticists. Instead I just saw beautiful children just like my beautiful girl.<br />
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Over the years with Daisy I found many tribes; The TPN support groups, hospice groups, special educational needs groups, but none felt like family as much as the Costello Syndrome group.<br />
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Together we all shared the trials and tribulations of our complicated lives, friends all over the world, united by the hras gene mutation. We cheered when our kids achieved milestones, we cried when one of our family died.<br />
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And then Daisy died. The outpouring of love from my special family sustained me during those dark days when I was just numb with pain. The year she died was also a year for a Costello Syndrome family conference, my heart was lifted when I received pictures of my friends lighting a candle to remember Daisy along with all the other Costello Syndrome brothers and sisters who had died, she was not forgotten.<br />
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Earlier this year I was invited to attend the 2019 Costello Syndrome family conference and speak to families about my experience caring for Daisy and what she taught me. I was also invited to speak at the International Rasopathies Symposium which was running at the same time. This is the medical symposium bringing researchers, geneticists and clinicians together to share the latest research findings on the group of diseases called Rasopathies which fall on the ras gene pathway, of which Costello Syndrome, caused by a mutation of the hras gene, is one.<br />
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As the conferences were being held in Baltimore I decided to combine work with pleasure and took Jules with me for an extended holiday on the East Coast.<br />
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After a week exploring New York City and Washington DC we arrived in Baltimore and as we neared the conference hotel I braced myself. I knew this would be a very different family reunion, a bittersweet one where I was the only bereaved parent in attendance. It was joyous to see our friends again, to meet new families I have only met online and most of all to meet up with the children and young people who all shared Daisy's features and gene mutation.<br />
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It was hard, and at times I had to take myself away because it was so emotional but most importantly it felt like coming home to the best family reunion. Where we fondly remembered Daisy and shared stories of so many of the children who were no longer with us. I had worried when Daisy died that I would lose that connection but it was stronger than ever.<br />
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I spoke at the family conference and shared how being Daisy's mum had made me the person I am today, what she taught me and continues to teach me. And then we spent time remembering all the children who were part of our family and are no longer with us....it was beautiful and poignant.<br />
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I spoke at the medical symposium a couple of days later, sharing how I had gained an extensive medical skillset and how I was using my experience to improve doctor/parent communications in paediatrics as well as helping people engage in difficult conversations around their child's care. And I was so moved when several doctors came up to me afterwards to thank me for my words, that they needed to hear them and be reminded why they do what they do.<br />
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Our Costello Syndrome Family support group is no different to any other family; it has its characters, it's quirks and it's occasional arguments and infighting, but there is strength in numbers when it comes to rare diseases. The power of the group to influence the research taking place into the syndrome, the exciting prospects of gene therapy and new interventions. For those of us who are bereaved or who have children too old to benefit from all of this we are still excited for our younger members in the hope that their lives will be changed by the medical advances. And we look with respect to our "older" members, those who lived for years without knowing what had caused their child's disability and illness, who lived without the knowledge that is benefitting others, who still shared their knowledge for the benefit of the whole family.<br />
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Daisy is no longer here but the Costello Syndrome community will always be my family, they are my tribe.<br />
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If you have a child with additional needs, diagnosed or undiagnosed, find your tribe, find the people who understand, they will be there for you and you can be there for them. A family united by adversity and strengthened by love and acceptance.<br />
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I'm dedicating this post to Ansley (aka Diva Ballerina), a little girl I got to meet at long last at this year's conference having only previously known her online. Ansley got to meet her family, in many ways she was the star of her final, farewell show. She, like Daisy had many complex issues and was severely life-limited and like Daisy she chose her time to leave us, just days after our big family get together in Baltimore. She joins her brothers and sisters united by a common gene mutation, we remember each and every one of them. RIP.<br />
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<br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0London, UK51.5073509 -0.1277582999999822351.1912379 -0.77320529999998222 51.8234639 0.51768870000001777tag:blogger.com,1999:blog-18079831.post-28144969151876960422019-06-20T17:59:00.001+01:002019-06-20T17:59:29.526+01:00Lucy's Light: Podcast InterviewI was recently for my friend Lucy Watt's podcast. You will know her from my When Life Gives You Lemons <a href="http://www.wasthisintheplan.co.uk/2018/03/when-life-gives-you-lemons-lucy-watts.html" target="_blank">interview</a>.<br />
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Lucy and I have known eachother for many years now and it was like talking to an old friend as I openly shared my personal experiences of what it's like to be a carer and my tips for anyone who finds themselves in a caring role for a family member.<br />
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<iframe allow="autoplay" allowtransparency="allowtransparency" frameborder="0" height="300" scrolling="no" src="https://embeds.audioboom.com/posts/7290182-i-think-this-is-an-important-thing-with-carers-we-struggle-on-steph-nimmo-for-carers-week/embed/v4?eid=AQAAAAC6C11GPW8A" style="background-color: transparent; display: block; max-width: 700px; padding: 0;" title="Audioboom player" width="100%"></iframe>Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-28560033098649066532019-06-15T22:13:00.000+01:002019-06-15T22:13:48.345+01:00The Children's Hospice Crisis, part of a bigger problem....It was my birthday this week, another turn around the sun and another year I'm grateful to be alive and brimming with plans.<br />
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But instead of enjoying a lie in and breakfast cooked by my chef-in-training youngest son, I was up at stupid o'clock, necking a coffee before driving down the A3 to the BBC Surrey radio studios to respond to a news item they were running.<br />
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It was about the funding crisis in children's hospices, particularly Daisy's hospice, Shooting Star. <br />
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Anyone who knows our family knows how important the support of Shooting Star was, and is, to our story. How Daisy was referred at 6 months and from that time onward we knew that we had someone walking a path alongside us, caring not just for Daisy but the family as a whole. Respite breaks away from the home were as important as visits by our hospice at home nurse. And siblings days and a range of therapies gave our other children their own space.<br />
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Daisy was supported by Shooting Star Hospices for 12 years, they were there at the end of her life and continue to support our family now. The staff there learned the complex procedures needed manage Daisy's care so that I could get a break, they worked in close partnership with the palliative care team to provide a joined up plan, they were there to catch us when our family dynamic fell apart and Daisy's daddy was diagnosed with terminal cancer. <br />
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All of their care, all of their support, at no cost to us, at no cost to social services, at no cost to the taxpayer.<br />
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This is why I get up on my birthday and speak on the radio. This model is unsustainable and it's indicative of a huge problem in how we support and care for all families caring for children with the most complex needs in this country.<br />
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Children's hospices are not funded by the government. OK, well I'll qualify that, children's hospices receive minimal guaranteed funding from central government sources, in Shooting Star's case this amounts to 10% of their income. The rest is made up from donated funds; from coporate sponsors, from people running marathons, from volunteers shaking the collecting tin. Year in year out children's hospices have to raise millions to fund services that are increasingly reaching breaking point.<br />
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On Monday Shooting Star Hospices announced that they would halve the respite care they are currently offering and support only those children who were close to end of life. Last week Acorns Children's hospices announced that they are planning to close one of their sites as there are simply not enough cash reserves available for the charity to keep three hospices running.<br />
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Medical science is incredible. Breakthroughs over the past few years have meant that life expectancy for sick children has increased. Without the drugs and interventions that Daisy received she would not have lived for twelve years, children are leaving neonatal units who would previously not have survived. But in many cases children are coming out of hospital with the most complex of care regimens; machine dependent, with multiple therapeutic needs and complex drug charts....and this is where it is all starting to break down.<br />
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While medical science has advanced and children are living longer, the reality is they are still life limited and therefore need support services for longer. Support services like those offered by a children's hospice. When Andy was at end of life , he received support from the outreach team from our local adult hospice, it only lasted for a few days as that was all that was needed and I subsequently discovered that our local clinical commissioning group contract to the hospice to supplement their community based nursing teams and offer palliative care in the community. No such model exists for paediatric palliative care. Our community nursing team was understaffed and stretched to capacity. they provided support during the week, any overnight emergencies had to be dealt with by a trip to A&E , normally via ambulance. Clinical Commissioning Groups lean heavily on children's hospices to plug these gaps. Providing respite support for children with complex needs is both expensive and requires highly skilled staff, and hospices simply cannot continue to operate without a guarantee of funding. Or rather they can operate but they will have to cut the number of children they can support....<br />
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Last December the government pledged £25m <a href="https://www.england.nhs.uk/2018/12/nhs-england-announces-25-million-boost-for-childrens-hospices/" target="_blank">support for children's hospices</a>, however they have now reneged on that promise, none of that support has been forthcoming and the result is that hospices are closing beds, they are reducing the support they are able to give families.<br />
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This is all part of a wider issue in funding paediatric palliative care and social care funding for children with disabilities as a whole. <br />
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Excellent palliative care enabled me to make plans for Daisy's end of life, it enabled me to give her a good death but this was provided through a combination of voluntary and commissioned services and we were lucky, the postcode lottery meant that we were supported by a hospice able to provide the level of care Daisy needed. I fought hard for the continuing care package that was needed to keep Daisy at home and out of hospital, but even with support I was on my knees trying to juggle the complex medical regimens with caring for my other children , and subsequently for Andy. <br />
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Everything is a battle, it's a fight.....and it's a symptom of the lack of support and funding across the entire sector. Not only are children's hospices struggling to provide the care needed for an ever increasing number of children, for longer and with the most complex of medical regimens, but those families are also not supported by commissioned community-based services in order to care for their child safely and away from a hospital ward.<br />
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I was terrified that I would make a mistake that could cost Daisy her life. I was administering drugs on my own at home that would be double-checked on a hospital ward, I will never forget the moment Daisy had an anaphylactic reaction to an intravenous antibiotic I was infusing, when I was alone in the house....<br />
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<a href="https://disabledchildrenspartnership.org.uk/" target="_blank">The Disabled Children's Partnership</a> (a coalition of more than 60 organisations campaigning for improved health and social care for disabled children, young people and their families) estimates that there is a £434million funding gap in children's social care.<br />
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No wonder parents are on their knees, the hospices that they turn to for support are finding it increasingly difficult to care for all of the children needing help in their area and children's social care services in the community are massively underfunded. The ripple effect as always reaches far and wide. It's about families, my other children only had one chance of a childhood , this was almost my mantra when I pleaded my case for extra support to keep Daisy at home. <br />
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I was lucky (oh the irony), when Andy was diagnosed with cancer, extra support was put in place, and we had the hospice there to provide that all important safety net. Without that support? Would Daisy have lived for so long, would we have been able to spend as much time at home together as a family, would I have been able to hold my husband's hand as he took his last breath knowing that my disabled child was safe and cared for?<br />
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So this is why I will never turn down an opportunity to talk about the importance of funding for paediatric care and social care. We are failing our most vulnerable families.<br />
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Next week is <a href="https://www.togetherforshortlives.org.uk/get-involved/fundraise-for-us/initiatives-and-appeals/childrens-hospice-week/" target="_blank">Children's Hospice Week</a>. <a href="https://www.togetherforshortlives.org.uk/" target="_blank">Together for Short Lives</a>, the children's hospice and palliative care charity, will be continuing to highlight the fact that the government has reneged on it's promise of funding for Children's hospices. In addition , <a href="https://disabledchildrenspartnership.org.uk/" target="_blank">The Disabled Children's Partnership</a> continue their campaign to address the shortfall in children's social care funding through their #GiveItBack campaign.<br />
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Those of us caring for the most complex children face a battle every day to keep them alive, we shouldn't have to fight for the services to support us.<br />
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<br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-71016614660704925622019-04-27T23:44:00.001+01:002019-04-28T19:13:40.346+01:00Vaccinations: More important than ever.<span style="font-family: "arial" , "helvetica" , sans-serif;">I found myself in a curious situation this week when I actually agreed with Donald Trump:</span><br />
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<span style="background-color: #fefefe;"><span style="color: purple; font-family: "arial" , "helvetica" , sans-serif;">"They have to get the shots. The vaccinations are so important. This is really going around now. They have to get their shots," Trump told CNN's Joe Johns on Friday when asked what his message is for parents</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I'm staunchly pro-vaccination for many reasons and have constantly put my head above the parapet to explain why. I wrote a <a href="http://www.wasthisintheplan.co.uk/2013/04/why-vaccination-is-no-brainer-for-me.html" target="_blank">blog post</a> in 2013 explaining the reasons why I choose to vaccinate and expressing my frustration with those who choose not to. At the time Daisy was still alive, Andy did not have cancer. I was trolled online by the anti-vaxx community and whenever I reiterate my case I am trolled by them. I don't care, really I don't, I stand by my beliefs and even more so.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So, to recap, for those who have never met me and don't know my blog and my story;</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I am a measles survivor. I was not vaccinated, when I was born the measles vaccination, while widely available, was not commonly given. I developed measles at the age of 4</span><span style="font-family: arial, helvetica, sans-serif;">, it's one of my strongest early childhood memories, of being terribly ill at home, in a darkened bedroom, unable to bear bright lights. I was lucky, the only lasting damage is that I am now completely deaf in my right ear. </span><br />
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<span style="font-family: arial, helvetica, sans-serif;">It's a pain in the ass, and as my audiologist told me, it would have been easier if I had lost 50% hearing in both ears, they can do something about that rather than 100% hearing in one ear. But it's a minor inconvenience compared to what might have been.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Just a few months after this picture was taken I developed measles</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Roald Dahl <a href="https://www.roalddahl.com/roald-dahl/timeline/1960s/november-1962" target="_blank">wrote</a> so movingly about the death of his daughter from an often fatal complication of measles, measles encaphalitis, swelling of the brain. Measles can, and does kill. Dahl's daughter was otherwise healthy, in a child or adult with an other health issues it's a potential death sentence.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Our memories are short. Medical science has made us complacent. We expect to survive, we expect the medics to make things better, and when people do not get better there is almost a sense of shock and disbelief.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Just before Christmas, 2004 I gave birth to my fourth child. A little girl called Daisy. She was born two month's prematurely. I had been very ill when I was pregnant with her. Thanks to excellent ante-natal and neo-natal care both Daisy and I survived. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Daisy had a very rare genetic disease which caused her entire gastro-intestinal system to fail. Alongside multiple surgeries to remove most of her colon, she had to receive all her nutrition intravenously, via a catheter embedded into a vein. She also spent most of her life on powerful immunosuppressants and steroids to control the severe inflammation in what remained of her gastro-intestinal system.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Medical science gave Daisy life and it gave us hope. With her complex regimen of drugs and intravenous infusions Daisy was able to enjoy life. Had she been born even ten years previously she would have died in her first year. But this all came at a cost. She was susceptible to infections, she had many hospital admissions for sepsis, caused by bacteria colonising her multiple catheters and indwelling lines. This was a risk we were prepared to take because when Daisy was stable she had a good quality of life and was able to go to school and enjoy family time.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Daisy could not receive live vaccines however. She had a compromised immune system which meant that vaccinations were contraindicated. But this also meant that she was at risk of contracting infections. She had shingles and chickenpox on multiple occasions. In Daisy these were severe infections, landing her in high dependency, If there was a chance she had come into contact with a child who was infectious with chickenpox then Daisy would have to have a preventative medication via a very large and painful intramuscular injection. My biggest fear, however, was measles. Remembering how I had felt and knowing how the virus had affected me, an otherwise healthy child, I knew that measles would kill the daughter I had fought so hard to keep alive.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I didn't worry too much however, I mean, we had eradicated the disease in the UK, you just did not hear of children having measles. Measles, mumps, whooping cough...all diseases of another generation, a distant memory, we were safe.......medical science had solved the problem...</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">......Until slowly a movement began to grow, parents who decided that they did not want to vaccinate their child....and cases of measles began to rise. Prompting my original blog post. I just could not see why people would not want their children vaccinated, after all I lived with a child who could not be vaccinated and I knew the fear that it brings.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But the anti-vaccination movement has got bigger and bigger, and alongside that growth my life has my life changed dramatically.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Daisy died, at the age of 12, in January 2017. She died of sepsis. Years of antibiotic and anti-fungal treatment for infections had meant that she was colonised with multiple drug-resistant bugs, on top of that her cardiomyopathy was becoming worse and her heart failing. The bottom line was that it was her time and I had to make the decision to stop life support and let her go. I knew that medical science had kept her alive and I knew that we were lucky to have had twelve wonderful years with her.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Medical science...in many ways the progress we have seen over the past decades has sanitised us to the realities of what life was like without the drugs and treatments that kept Daisy alive. Daisy would have died within her first year, I potentially may not have survived her birth. That's what medical science meant for my family. Now children are surviving , people are surviving and it's easy to take for granted that what is survivable now was fatal a generation ago. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The year before Daisy died, my husband, Andy died of cancer. He had been diagnosed the year previously. He was stage four on diagnosis. There was no cure. But immunotherapy treatment and brutal chemotherapy together with experimental radiotherapy gave us a year as a family. It also wiped out Andy's immune system. Suddenly I had two family members, both terminally ill but also at huge risk if dying before their time if they contracted measles.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Daisy and her daddy</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I hear the arguments from the anti-vaxxers; there are still people who believe in the flawed and disproven <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136032/" target="_blank">Wakefield research</a> that links autism and the combined MMR jab. I understand the fear of parents of babies faced with multiple viewpoints. Maybe I would have been one of those wavering parents, despite my deaf ear, as a parent you are overwhelmed with all the information and the burden of making decisions for your child that could massively change the course of their life.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I do not believe that vaccines cause autism, 100%. I am the parent of two boys on the autistic spectrum. They were vaccinated, the vaccine did not cause their autism. I hear the cases, people write to me, but the reality is that there is absolutely no scientific evidence that there is a causative link between the MMR vaccine and autism. The causation that I have been presented with is tenuous and flawed.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">However I also do not believe that vaccines are 100% safe. What? I hear you cry! I thought she was pro-vaccination? I am, but the reality is that nothing is 100% safe, when we make a decision on behalf of our child we are taking a calculated risk. And I have had to make decisions that no parent should ever make for their child; decisions that make the vaccine decision pale into insignificance.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And yes there are cases of vaccine injury and side effects. Like every single drug, from the contraceptive pill to aspirin you are taking a calculated risk when you decide to take it.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When Andy signed the forms for cancer treatment he knew that there were risks, not only that the treatment might not work but also that the side effects of the actual treatment could potential hasten his (inevitable) death. Ultimately it was the rare side effect of the experimental radiotherapy treatment that set in train events that lead to his death. Yet Andy still stood by his decision, at the end of his life he was glad he had given it a shot.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Andy was able to make that choice for himself but as parents we have to make choices for our children. And the luxury to choose to vaccinate is an early choice and dilemma for all parents, so I would ask you to consider this:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">What if you did not even have this choice? How lucky are we to live in a world where we can prevent these diseases rather than hope that our child is not one of the unlucky ones.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And then there is the question of the herd immunity to consider. To ensure protection of the most vulnerable, 95% of people who are able to be vaccinated against a disease need it in order to ensure that those who can't are not placed at risk. What if you were one of the ones who could not? What if you had sat at your child's bedside waiting for a bone marrow match? A new set of lungs? A new heart? Knowing that the powerful anti-rejection drugs meant that although they would have the gift of life that life would be spent vulnerable to contracting fatal infections because they could not receive vaccinations? What if you were the parent of the child who had died and you had made the decision to donate their organs? What if you had been me, a few years ago, fighting tooth and nail to keep my child alive, knowing I was pouring toxic drugs into her just so that she could do the things she wanted to do, go to school, play with her siblings, but always living in fear as I heard about a new measles outbreak in my area.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And when you were pregnant with your child, what would have happened if you had been exposed to measles, mumps or rubella while your child was in the womb causing disabilities and issues they, and you, would have to live with for the rest of their lives?</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Last time I wrote about this I was told that it was not about the wider community, or other children, parents messaged me that all they cared about was their child. I was given information about children being diagnosed with autism,about immune systems being overloaded with toxins, about vaccines containing mercury......</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Some of the drugs used to keep Daisy alive were so toxic they made her hair fall out. I chose, as Daisy's mum, on her behalf, to put my faith in science, despite everything, the side effects, they gave Daisy time. That decision did not come easily and I can empathise with every new parent who is now being bombarded by a powerful anti-vaxx lobby. But remember, this is parenting, these decisions are tough but think about it another way, what if your child was diagnosed with leukaemia? The survival rates for this blood cancer are now high, many years ago it was fatal, but the treatment is still not guaranteed and the side effects can last a life time. Would you still agree to the treatment for your child? As I see it that decision has far greater risks than the decision about whether or not to vaccinate.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Parents will find all sorts of pseudo-scientific reasons for why they choose not to vaccinate; overloading their child's immune system, heavy metals and toxins in the vaccines....again, just try and make life and death decisions about your child when they have a rare genetic disease and are not likely to live to adulthood. Then you worry less about the pseudo-science and more about whether you will get a few more years of time with your child.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I know that for many anti-vaxxers whatever I write and say they will never be swayed, I will be bombarded by their evidence and papers to justify their decisions but there is one group who can have a voice. Those children who were too young to decide whether or not to be vaccinated, whose parents decided for them. They are growing up now, becoming teenagers, young adults. They can make their own decisions.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In the UK young people aged 16 can ask to be vaccinated without their parents knowing and thanks to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4962726/" target="_blank">Gillick Competence</a> this can occur at a younger age if their doctor deems that they are competent to make their own decisions. If you are a young person who was not vaccinated and is now aware of the pros and cons, you can ask to be vaccinated, it's your decision and your risk entirely. If you decide to be vaccinated you will be protecting yourself and you will be protecting those around you who are vulnerable and cannot be vaccinated.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And lastly, if you are the parent of an unvaccinated child, please do not expose other vulnerable children to preventable diseases of childhood. If you suspect your child has been exposed to measles, mumps or rubella keep them away from the community, do not send them to school, keep them at home. If they do develop the diseases I really hope that your child survives, I really do. As a parent who watched her child die I would never wish that experience on anyone.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com1tag:blogger.com,1999:blog-18079831.post-63147221443569903272019-03-31T18:08:00.001+01:002019-03-31T18:08:08.774+01:00To be a mother I always wanted to be a mother. It was a choice I made and a choice that came easily to Andy and I , we know how very lucky we were to have been able to even have that choice.<br />
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Four children, each journey with them so different.<br />
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When Theo was born I assumed that babies just cried all the time and didn't sleep. Now I know that he has disordered sleep as a result of his ASD diagnosis. Sleep....I remember wondering if I ever would sleep properly again. With three children under 7 and heavily pregnant with Daisy I lay awake at night, my skin burning with the <a href="https://www.nhs.uk/conditions/pregnancy-and-baby/itching-obstetric-cholestasis-pregnant/" target="_blank">obstetric choleastasis</a> that I developed in pregnancy, hoping that this last baby would be a good sleeper.<br />
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Of course Daisy took the art of not sleeping to the extreme, eventually needing a huge cocktail of drugs at night to help her sleep. I lay in bed listening out for her, crying for mummy, a seizure or a cry of pain....<br />
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And now, I still can't sleep, now I have older children, my body and mind still listen out for them, and still I wake at night, this time to silence.<br />
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They needed me all the time, I wondered if I would ever have time for me again, that there would ever be time when I was tending to the needs of a small person, all needy, in their own little ways.<br />
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And now the most needy one is no longer here and the my others don't need me. It's the time I wanted, time to myself. But when you have spent half a life time being needed, putting your child's needs before your own, it's difficult to know what to do. But they do still need me, not in a physical way, just to be present, to be available when late at night, my eyes heavy and wanting to go to bed they decide they need to talk, they need to know I'm there, the anchor, even when they are not here.<br />
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Empty nesting, it's very real. One in University, fiercely independent but yet indignant that she can't track my whereabouts on her phone, one working full time, who still likes to tell me about his life and plans, and one making plans for a new college course, needing me to buoy him against the crippling anxiety he feels. <br />
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Motherhood never ends, it just changes. It changes you, each stage so different, that umbilical cord is still very much attached.<br />
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Even when they are not here. I am and will always be Daisy's mother. I will always be their mother. The mother of four, very much wanted and loved children. <br />
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My body knows this, the folds of loose skin on my stomach the visible signs of the severe <a href="https://www.nhs.uk/conditions/polyhydramnios/" target="_blank">polyhydroamnios </a>which were the first sign that something was not right with my last pregnancy, my chronic insomnia from nights awake worrying about them.<br />
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I'm still learning, this new stage, as a mother of older children, as a bereaved mother, I am learning what this means.<br />
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I glow with pride as I watch them make their way in the world, independent, resilient, determined. As I remember my beautiful Daisy and the mother she made me, the love she gave me.<br />
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Mother's Day is always hard. It was a choice I made, it was never going to be easy, motherhood is not easy. I seem to have travelled a harder path but I wouldn't swap it for the world.<br />
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As always I send my love to those who so want to become mothers and can't, to those who are mothers but can no longer hold their children and to the mothers like me who continue to make it up as they go along!<br />
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<br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com1tag:blogger.com,1999:blog-18079831.post-12076908282553570132019-03-15T23:49:00.003+00:002019-03-15T23:58:39.371+00:00Please don't tell me they passed awayI live next door to the local church and often take in parcel deliveries if there is no-one available at the presbytery to sign for them. The other day I called over to drop off a box that had been left at our house. A new priest answered the door, there has been quite a turn over of priests in the past few years so he didn't know me, that I was a neighbour , and I think he assumed I was the Amazon delivery person!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSQEv7zBNifBBOHlnanN4WfsXibRWjt_51xllIu6B6C5FEBpRhwQFyzB0HDIWZW5x7LE0pk4rkiZ48w4oOWhKd0ihKXUcOFADhkVZk-8UrYXzCAcS9IZQ9VxTZqrrfhYCoE7VQIg/s1600/10614316_692389087510203_4575887195661608186_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="black and white picture of Daisy and Steph lying in bed together with Steph gazing lovingly at her daughter" border="0" data-original-height="960" data-original-width="665" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSQEv7zBNifBBOHlnanN4WfsXibRWjt_51xllIu6B6C5FEBpRhwQFyzB0HDIWZW5x7LE0pk4rkiZ48w4oOWhKd0ihKXUcOFADhkVZk-8UrYXzCAcS9IZQ9VxTZqrrfhYCoE7VQIg/s400/10614316_692389087510203_4575887195661608186_n.jpg" title="" width="275" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We told Daisy that "Daddy died" so that she knew that he would not be coming back.</td></tr>
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"Hi, I'm Steph" I said "I'm your neighbour, I'm also part of your parish" This is technically true. I was until a few years ago still a practising catholic so I explained to him that I no longer go to church and he asked me why that was.<br />
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"Well, you see father" I explained "my husband died of cancer and my daughter died the following year. They both experienced a lot of pain and I have to question why a benign god would allow particularly my daughter to endure so much pain and hardship in her little life. I can't fathom it"<br />
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I know, I could have just handed over the parcel and not said anything but I was feeling quite bolshy that day and I thought it might be an opportunity for a good theological debate and maybe he might have had an argument that could have challenged me.<br />
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"They are both in a better place" was his response.....<br />
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Needless to say I didn't hang around to chat further (in fact he told me it was his day off and if I came back when it wasn't we could have a conversation about my faith, or lack thereof).<br />
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This blog post isn't about faith however. I have huge respect for people of all faiths and none, anyone who knows me, knows that and I would not seek to challenge someones beliefs, we all come to our belief system via our own path. No, what really set my teeth on edge was that phrase "they have gone to a better place"....does that mean that I'm in a rubbish place then? Does it mean that life on earth is really that bad for my family left behind?<br />
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I like direct language and communication, living with two boys on the autistic spectrum has taught me that nuance can lead to confusion. Until Andy died I always avoided the words "passed away". I was brought up in a family where we referred to people dying, we did not use metaphors or euphemisms. But increasingly I found myself saying that he had passed away, I even used it in blog posts and I began to question why someone who was so direct in their speech was using this indirect term to describe what had happened.<br />
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I realised that what I was doing was mirroring other people's language in order to protect them, to soften the blow. People continue to be so taken aback and shocked when I tell them that my husband and daughter died, using words like passed away seemed to take the edge off it.<br />
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But it's wrong. Well for me it's wrong. Andy and Daisy died, they did not pass away, I choose to use the language of death and dying and so I'm not being honest with myself when I don't use that language in describing what has happened to me .<br />
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It's a symptom of our attitude to death and dying, to the taboo that surrounds it, by refusing to name what has happened, by speaking in code are we almost in denial?<br />
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I try and lead by example, I speak very openly about my story, I share many (but not all) of the details because I want to re frame the narrative around death and dying. As I always say, it is the only guarantee we have in life. I want people to know that it's alright to talk to me about Andy and Daisy and to do that I need to be open and give them the language to use.<br />
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Andy and Daisy did not lose their fight, they did not put up a battle...this implies they failed in some way. They succeeded in my eyes by really living, that's what I want people to focus on. Yes it's absolutely rubbish that they died young but they did not fail some sort of test and lose, they just died. And sad as it is, sometimes people die when we don't expect them to, sometimes they die before they have had time to do all the things they wanted in life, and that sadly is the reality. We really need to stop hiding behind euphemism to soften the blow and maybe just face it head on. Because in accepting that sometimes people die young we can focus on making sure we get on with life and wring every precious drop we can out of it.<br />
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You may use the term passed away, but if you do, own it, don't say it to make the other person feel better, that's the difference. And please don't refer to people losing a battle, especially when they have cancer or an incurable disease, this is not a competition, it's just a sad truth that sometimes people get better and sometimes they don't .<br />
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Life sucks like that, it can throw you off course in the most unimaginable way so all the more reason to grab it and make the most of that finite time we have on this tiny speck of a planet in the infinite universe.<br />
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<i>(Quick plug for my book <a href="https://www.amazon.co.uk/Goodbye-Daisy-Stephanie-Nimmo/dp/1999805372" target="_blank">Goodbye Daisy</a>, a unique resource to support children, their parents and professionals through their grief when a friend or loved one dies, I even refer to Daisy dying in the children's story section of the book, children with learning disabilities need clear language otherwise it can open up doubt and confusion)</i><br />
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<br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com3tag:blogger.com,1999:blog-18079831.post-30740125896817820012019-01-29T21:28:00.000+00:002019-01-29T21:28:16.214+00:00These are the difficult daysThese are the difficult days. The winter days. The onslaught of anniversaries and reminders is ceaseless.<br />
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It seems never-ending and the season is so appropriate but always the optimists we really do try and find joy and remind ourselves how lucky we are to be alive and to have so much in our lives. But on the dark, cold, wintery evenings....evenings like this, it can be difficult.<br />
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It seems so unfair that everything has conspired to hit at once. It starts at the end of October, the anniversary of when my own father died of the same cancer that killed Andy. He would have been 80 now, I was 32 when he died, and the mother of a 3 year old and a 1 year old.<br />
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<tr><td class="tr-caption" style="text-align: center;">Speaking at the launch party for Goodbye Daisy last week</td></tr>
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Then it's the anniversary of hearing those words that Andy too had cancer, these things never leave you, they become the moment your life changes forever, a point in time. Of course Andy's birthday is at at the end of November, then it's my Dad's birthday, it was always the day we chose to put up Christmas decorations when I was younger, now they go up on the 1st of December in memory of Daisy's constant insistence that the tree just could not wait!<br />
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The anniversary of Andy's death is a week before Daisy's birthday. Her birthday, the day she made her early arrival into the world and again my world changed and I became both her mother and carer.<br />
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We mark these days, we celebrate the birthdays, we remember they lived. Christmas was special this year, the first with just the four of us, no other family. It was good. The children were incredible, they decided to "do Christmas", they cooked for me, I had nothing to do but to go for a walk with Pluto and watch TV, it was the grown-up Christmas I had always craved but always, without an over-excited Daisy so utterly bittersweet.<br />
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Like many bereaved people New Year's Eve is hard, it's another year. 3 years away from last seeing Andy, two years away from Daisy....what would we have been doing? The loss of a child is so incredibly hard, there are some very tangible reminders of time-stopping...would she have outgrown her clothes by now, would her obsession with all things pink have waned just like her big siser and her infamous emo phase? I will never know...<br />
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And now I sit here, just days away from the second anniversary of Daisy's death. Second anniversaries are really hard. The acute sharp pain has dulled, the relief at getting through a year intact is no longer there, now it's reality...cold and stark.<br />
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I've been struggling to find my new life now, who am I two years later? For so many years I was a partner, a wife, a mother, a carer...now my three children are older and while they need me, they don't need me in the same way, they are finding their own way in the world and the freedom that I craved during those long and lonely hospital stays is there for me.<br />
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Late last year I was involved in a silly car accident. I ended up in an ambulance and in A&E for the day. The memories flooded back and I felt so vulnerable and alone. PTSD my doctor wrote on my sick note for work. It took a silly car accident for me to realise that my busy-ness, my constant need to be occupied was a way of coping. Of being needed, of remaining relevant. But it was also a way of hiding from my grief.<br />
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When I stop the memories hit, the reality of what had happened. I was not telling someone else's story, it's my story.<br />
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At last I have the time and space to grieve and to rebuild. To find out who I am and who I want to be. This is the time for me that I always wanted but it's a scary prospect. I have been scared that in moving forward I will forget, but I have learned that I will never, ever forget. They are always with me, Andy and Daisy. They shaped the me that I am now learning to be.<br />
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I want to find a time when I can remember the happy days with Daisy and smile, I don't want to feel pain at the thought of her pain. I'm working on that. I am a constant work in progress.<br />
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My projects and work are all about trying to make meaning of everything that has happened to me, to move me forward from these difficult days. To turn the unimaginable into a positive force for good, to change things for others.<br />
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Daisy's anniversary approaches fast and I will go to Great Ormond Street Hospital and see her name in the memory book, I will take flowers to the chapel where we celebrated her life with our friends there. But will also spend time doing some training, I've been doing a lot of that, training medical professionals, telling them what it is like, on the other side of the hospital bed. Helping them see the person beyond the disease. I am choosing to celebrate Daisy's (and Andy's) life that way.<br />
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There will be one more anniversary, the anniversary of her wonderful funeral, when we said our last goodbyes. Then it will be spring and there will be light and life and plans.<br />
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These are the difficult days, but they are important days, these are the days that have shaped me and made me, these are the days that lead me to my new life.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH4CSDtrF406RQxAP4ScSdsQJumqpDFteD5oOILdY9im_hMkOzyqHvMP6q7TjaDm-FaOqD2IbZajqe4aHa_NsD9VNsQq-D8YNegSnSeh_UvJcunE22q6N9mgCdlXmgsLjJ8GiKVQ/s1600/tree.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="picture of a hand holding a label with the words "darling daisy, we miss you, love mummy xx"" border="0" data-original-height="1067" data-original-width="1600" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH4CSDtrF406RQxAP4ScSdsQJumqpDFteD5oOILdY9im_hMkOzyqHvMP6q7TjaDm-FaOqD2IbZajqe4aHa_NsD9VNsQq-D8YNegSnSeh_UvJcunE22q6N9mgCdlXmgsLjJ8GiKVQ/s640/tree.jpg" title="" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">at the launch of Goodbye Daisy last week we hung labels on a memory tree, this is my message to Daisy.<br /><br /><div style="text-align: left;">
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<br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-5231473912639994722018-12-03T14:48:00.000+00:002019-01-29T21:45:27.412+00:00Goodbye Daisy - a book to help children talk about death"if you want something you will make it happen...if you dont. you'll find an excuse". A colleague shared these words with me many years ago and it's the mantra by which I live my life.<br />
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I really wanted to write a book to support learning disabled children through their grief when someone close to them died. It could have been so easy for me to come up with an excuse; after all I have a lot on my plate already.<br />
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But I really wanted to get this book out there, to help the children like Daisy's friends who don't have the words or voices to articulate their feelings of loss.<br />
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So I did it. Earlier this year I launched a Kickstarter because I figured my proposition was so niche it would take far too long to persuade a mainstream publisher to take it on. I achieved target within weeks and today Goodbye Daisy was officially published.<br />
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I am so proud of it. It's a book in three parts; a beautifully illustrated social story featuring a little girl called Elsie. There is also a section of advice for parents and I worked with psychotherapists to develop a section for professionals supporting children, families and staff in schools.<br />
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You can buy Goodbye Daisy from all online book retailers or order a copy via your favourite bookshop. You can also order a copy direct via my publisher using this <a href="https://www.hashtagpress.co.uk/product-page/goodbye-daisy-by-stephanie-nimmo" target="_blank">link</a>.<br />
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I've put a holding website up at <a href="http://www.goodbyedaisy.com/">www.GoodbyeDaisy.com</a> and in the spring I hope to launch it as a full resource site with links and information for parents, carers and schools as they support children in coming to terms with the death of a school friend. I am also planning on offering a half day training course to schools (please email me via this blog if you are interested).<br />
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Next January it will be two years since Daisy died. So much has happened in that time and that little girl's impact has been spread far and wide. I'm so proud of this book, I hope it will help lots of children and help grown ups engage in the difficult conversations about death and dying and remembering happy times that are so much an inevitable part of a special needs community.<br />
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Thank you to everyone who pledged and who has already pre-ordered the book. Please tell people about it, share the links and review it so it can get to the people who need it, when they need it.<br />
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This one's for you Daisy, always dancing in the stars!<br />
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#GoodbyeDaisy<br />
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<br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-46353236744820076602018-11-14T22:46:00.000+00:002018-11-15T09:03:15.706+00:00Remember when....<br />
#RememberWhen is the hashtag for Children's Grief Awareness week in the UK.<br />
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The week starts with the global day for remembering children who are grieving the loss of a parent or sibling. It always takes place in the run up to Christmas/the holiday season, after all it's this time of the year that the sense of loss can be most poignant.<br />
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For children the run up to Christmas is about anticipation, fun...for our family it is a constant reminder of the two huge, gaping holes that are in our lives.</div>
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Unfairly...not that there is any fairness in it all anyway...all of our significant anniversaries fall at this time of year...starting even more unfairly with the anniversary at the end of October of my own father's untimely death from the same cancer that killed Andy. November is Andy's birthday, then December is the anniversary of his death followed a week later by Daisy's birthday and of course her most favourite time of the year, Christmas.....<br />
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It will be three years since Andy's death this December, two years since Daisy died in January. Time moves on and we are learning to replace the memories of their last, traumatic hours with happy memories.<br />
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I was 32 when my dad died, I had two very small children and I was devastated. At least I was grown up, at least my dad had seen me grow up. My children were all under eighteen when their father died, cheated of so many new memories and times together.<br />
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And while they were so young when Andy died they were even younger when Daisy was little and they wrestled with the anticipatory grief of knowing that their adored baby sister would not grow up and grow old and that she would die in childhood.<br />
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According to the <a href="http://www.childhoodbereavementnetwork.org.uk/" target="_blank">Childhood Bereavement Network</a> one in 29 children in schools are bereaved of a parent or sibling, 24,000 parents die each year leaving behind dependent children. My children had a double whammy. They had such an early education in death and dying however that talking and sharing happy memories of times we spent together as a family, while not easy, is definitely something we do well at home.<br />
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We spent years appreciating the importance of precious time together, savouring our moments, I know Andy and I did the right thing in being open and honest with the children about Daisy because it has given them incredible resilience and strength as they face adulthood without their father and sister.<br />
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Anyone who has experienced time Chez Nimmo will know that we don't wallow in grief, we experience it, but we also do a great line in trench humour and share many happy and funny memories . It is this openness and sharing that gets us through the dark days....<br />
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There are so many memories, the jokes, the funny sayings, the times we spent together.....<br />
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We remember Daisy's sense of humour; how she would find it hilarious if someone tripped or dropped something. Her obsession with Christmas...which started in February each year when she would suddenly remember that Santa had forgotten to bring her something from her extensive Christmas list and her insistence that the <a href="https://singinghands.co.uk/" target="_blank">Singing Hands</a> Christmas CD would be played on every car journey from June onwards.<br />
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We remember Andy's incredible culinary skills, the fact that his recipe for lime and coconut loaf died with him. His obsession with the precise loading of the dishwasher and his ability to tell the best stories.<br />
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Each of my children carries precious memories of special times;<br />
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The times Jules and Andy spent camping and cooking over open fires together, when Andy drove Xanthe to her prom in our camper van, decorating it with fairy lights and a glitter ball, when Theo had to endure Andy's enthusiastic singing as they watched their beloved Arsenal play.<br />
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We remember the nicknames Daisy had for the children;Yoyo, Cookie and George (as in Peppa Pig's little brother) and her fondness for role play, insisting at one time that we only call her Wendy!<br />
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So many happy memories, so many happy times....we knew the clock was ticking, we filled that time with a lifetime of memories.<br />
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When Andy died I spent many hours looking at pictures of him with Daisy, she drew such comfort from remembering the happy times with her daddy. She had taught us to live in the moment, to enjoy our time together, she taught us so much.<br />
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Children's Grief Awareness week reminds us that not everything is perfect, that not every family is together as they look forward to Christmas. We are, as always, determined to remember the happy times we did have...there were so many happy times. And there continue to be happy times as I watch my children grow and flourish, resilient and strong.<br />
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In remembering we keep our loved ones alive, we make them whole in our lives, they continue to live on. After Andy died a bereaved friend reminded me that love never dies. By remembering Daisy and Andy we remember that love we had and continue to have, and it's that love that sustains us through our grief.<br />
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You can find more information on Children's Grief Awareness week <a href="http://www.childrensgriefawarenessweek.com/" target="_blank">here</a><br />
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<br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0tag:blogger.com,1999:blog-18079831.post-57668468425188728722018-10-25T20:52:00.000+01:002018-10-28T15:19:41.250+00:00My speech at the Houses of Parliament (for Together for Short Lives)I'm so busy at the moment, it's crazy! Juggling the demands of my day job three days a week with freelance commitments and campaigning on behalf of families like ours. Families who are caring for the sickest children in the UK and those who are grieving the loss of their child...<br />
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It is this work, my campaigning work, which gives me the most pleasure and fulfilment. It isn't about simply telling our story, it's about working with some of the biggest influencers in the palliative care sector to effect change, to really make a difference.<br />
<br />
Tonight I'm in a hotel in Bristol and tomorrow I will join a closed event of academic and medical influencers discussing how we manage end of life care in the UK. In the evening I will be speaking at a public event looking at what needs to change, how we can do things better.<br />
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It's another night away from my children but it's another opportunity to change hearts and minds, to learn from what has gone well, what has not gone well and to continue to move forward in engaging the public in open conversations about how we talk about death and how we care for those who are life limited.<br />
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Earlier this week I attended an event at the Palace of Westminster as an ambassador for the children's palliative care charity, Together for Short Lives.<br />
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In the spring I gave oral and written evidence to an all party group of MPs who were looking at children's palliative services in the UK. On Tuesday 23 October the report of the findings was launched and I was invited to speak to a large group of MPs and members of the House of Lords from all parties together with people who work in palliative services, supported parents and young people and fellow charity ambassadors.<br />
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It was such an honour to be asked and I was aware as I spoke that I was speaking not just for our family but for the thousands of families just like ours.....<br />
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You can read the report and download the oral evidence <a href="https://www.togetherforshortlives.org.uk/changing-lives/speaking-up-for-children/policy-advocacy/all-party-parliamentary-group-for-children-who-need-palliative-care/" target="_blank">here</a>.<br />
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This is the transcript of my speech (sorry it's so long but it's so important and I know that those who heard it left with a far greater understanding of the challenges families face, day in, day out)...<br />
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<div style="line-height: 115%;">
<span style="color: black; line-height: 115%;"><i style="font-family: Arial, Helvetica, sans-serif;">I</i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> have a recurring
nightmare. It’s one where I’m in the
middle of setting up my daughter’s intravenous drip, connecting a prescribed
bag of fluids to a central catheter that runs in her jugular vein, the tip of
which rests in her heart. This is total
parenteral nutrition or TPN. Daisy, my daughter,
had intestinal failure and needed to receive all nutrition directly into her
bloodstream, 24/7, I was trained to administer this specialist procedure,
alongside countless other procedures in order to keep her alive. </span></span></div>
<div style="line-height: 115%;">
<span style="color: black; line-height: 115%;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></span></div>
<div style="line-height: 115%;">
<span style="color: black; line-height: 115%;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The nightmare is always the same, I’m halfway
through putting up the drip, keeping everything sterile and safe and I drop an
IV syringe on the floor…it’s my last syringe, I hadn’t had time to pick up my
monthly allowance from the community nurses and it’s now 9 o’clock, my other
children are in bed, I’m on my own and the only option I have is to wake them
up and for us all to go to A&E to collect the essential supplies that keep
my daughter alive….</span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><i><br /></i></span></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><i>Except this is not a nightmare, this was my reality….</i></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span></span>
<span style="color: black; font-family: "helvetica neue", arial, helvetica, sans-serif; line-height: 115%;">Daisy was a much
wanted fourth child, she was born prematurely and not long after diagnosed with
a rare life limiting disease caused by a sporadic gene mutation.<span style="mso-spacerun: yes;"> </span>Our other children were 7, 5 and 2 and our
lives changed overnight.<span style="mso-spacerun: yes;"> </span>I gave up a
successful business career and became Daisy’s full time carer negotiating the
alien world of hospitals and community services.</span><span style="color: black; font-family: "helvetica neue", arial, helvetica, sans-serif; line-height: 115%;"><o:p> </o:p></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><o:p><br /></o:p></span><span style="color: black; line-height: 115%;">We worried about
money, we were one income down which put huge pressure on my husband Andy, we
worried about our other three children, they only had one shot at childhood and
yet often they would go to bed at night only to wake up the next day to
discover that their sister had been blue lighted into hospital and their mum
was with her, most of all we worried about Daisy…. </span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span></span></div>
<div style="line-height: 115%;">
<span style="color: black; line-height: 115%;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;">We mourned the loss of the
child we thought we were going to have and we grew to love this little, feisty,
fragile, determined girl, not knowing how long she would be with us but knowing
that our time with her was limited….</span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">When Daisy was six
months old were thrown a lifeline when we were accepted for support by our
local children’s hospice, ShootingStar-Chase.<span style="mso-spacerun: yes;">
</span>With no family nearby to help us the hospice walked alongside us, giving
us much needed respite time, providing sibling support for our children and
just simply allowing us the opportunity to catch our breath and enjoy precious
time as a family.</span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">Daisy’s care became
more and more complicated.<span style="mso-spacerun: yes;"> </span>In 2008 she
went into hospital and began what turned out to be a year-long. Her
gastro-intestinal system had failed and Andy and I were trained to administer
her intravenous nutrition that would keep her alive and enable us to bring her
home.</span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">It was clear that her
health was deteriorating, she had multiple surgeries to form stomas, her
bladder failed and she had surgery to form a mitrofanoff stoma so that she
could be catheterised directly from her abdomen, she lost the ability to walk
and became wheelchair dependent and then the cruellest blow, she developed
complex, multi-focal epilepsy….</span><span style="color: black; line-height: 115%;"><o:p> </o:p></span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><o:p><br /></o:p></span><span style="color: black; line-height: 115%;">I learned medical
procedure after medical procedure in order to keep our family together, to keep
Daisy at home and out of hospital, I juggled her care with caring for my other
three children, by then my two boys had been diagnosed with high-functioning
autism…</span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">It was overwhelming…we were physically and mentally exhausted.</span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">Daisy was referred to
the palliative care team at Great Ormond Street.<span style="mso-spacerun: yes;"> </span>With their support we developed a workable
symptom care plan for her.<span style="mso-spacerun: yes;"> </span>Our
palliative consultant came with us to appointments and she liaised with our
local teams helping us fight for a joined up care plan for our girl.<span style="mso-spacerun: yes;"> </span>We also began to have detailed conversations
about end of life planning, what we wanted for Daisy, what was important for
her.</span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span><span style="color: black; line-height: 115%;">
Quality of life for Daisy was to ensure that she was allowed to be a little
girl and able to do the things she wanted….go to school, spend time with her
friends, be with her siblings and her beloved dog Pluto and go shopping…</span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">Working with the
palliative team we ensured that everyone understood that seeing Daisy as a
little girl and not a patient and maximising her quality of life was an
absolute priority.<span style="mso-spacerun: yes;"> </span>We fought hard to get
a care package so that we could get some sleep, and be safe in administering
the complex regimen that was keeping our little girl alive.</span></span></div>
<div style="line-height: 115%;">
<span style="color: black; line-height: 115%;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;">Daisy’s care was so complex that she could
only be looked after by specialist nurses, but eventually we were able to have
occasional nights when nurses would come to the house as part of a funded
continuing care package…</span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">Then our family was
hit by a bombshell.<span style="mso-spacerun: yes;"> </span>My husband Andy was
diagnosed with stage 4, incurable colorectal cancer.<span style="mso-spacerun: yes;"> </span>He was terminally ill, and it was likely that
he would die before Daisy….</span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">An emergency package
of care was put in place for the nights but there were times when Andy was in
hospital recovering from chemo or attending oncology appointments and I simple
could not be with him because I could not leave Daisy….</span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">Andy lived for a year
after his diagnosis and we focused on making the most of our precious time,
despite Daisy’s deteriorating health.</span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">Andy died at home and
a few hours before he died our wonderful hospice opened up their emergency care
bed so that the nurses there could look after Daisy so that I could be with my
husband as he took his final breaths.</span><span style="color: black; line-height: 115%;"><o:p> </o:p></span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><o:p><br /></o:p></span><span style="color: black; line-height: 115%;">We were all so
devastated when he died, it was a week before Daisy’s eleventh birthday and
just before Christmas.<span style="mso-spacerun: yes;"> </span>We struggled on,
trying to make sense of all. All the while my battle to ensure we had
consistent funded care for Daisy continued.</span></span></div>
<div style="line-height: 115%;">
<span style="color: black; line-height: 115%;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></span></div>
<div style="line-height: 115%;">
<span style="color: black; line-height: 115%;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;">Our community nursing team were understaffed and stretched beyond
measure, Daisy was one of the most complex children on their caseload and they
simply did not have the time or resources to support me, especially since the
time I needed support was at night or the weekends…as all parents and carers of
children with multiple medical needs know if anything is going to go wrong it
certainly is not going to happen during normal working hours!</span><span style="color: black; line-height: 115%;"><o:p> </o:p></span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><o:p><br /></o:p></span><span style="color: black; line-height: 115%;">My children became
young carers, sitting with their sister while I dashed for a shower, cooking
meals for each other, all the while trying to get on with their own lives, have
a childhood.</span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">Time and time again I
would be visited by members of the clinical commissioning group looking to
review our care package, looking to see where cost savings could be made….I was
on my own, widowed and grieving for my husband, supporting my four grieving
children and caring for the deteriorating health needs of my youngest
child.<span style="mso-spacerun: yes;"> </span>I spent my days terrified that my
care package would be cut and I would make a fatal mistake in managing Daisy’s
complex care which could potentially kill her.</span><span style="color: black; line-height: 115%;"><o:p> </o:p></span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><o:p><br /></o:p></span><span style="color: black; line-height: 115%;">A year after the
first anniversary of Andy’s death we celebrated Daisy’s twelfth birthday and
then Christmas.<span style="mso-spacerun: yes;"> </span>It was clear that the
window was closing and Daisy was able to enjoy less and less time doing the
things she loved, she was in pain, she was sad and she was tired.</span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">In early January she was
admitted to Great Ormond Street hospital, her condition deteriorated very
rapidly and she was transferred to intensive care and put on a ventilator.<span style="mso-spacerun: yes;"> </span>Her organs were shutting down and she was
being overwhelmed with irreversible sepsis.<span style="mso-spacerun: yes;"><br />
</span></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><o:p><br /></o:p></span><span style="color: black; line-height: 115%;">While I was on my own
at that time the conversations and planning that I had been able to have with
our palliative team meant that I was clear about what I wanted for Daisy in
terms of further resuscitation and intervention and what Andy’s wishes would
have been.<span style="mso-spacerun: yes;"><br /> </span></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><o:p><br /></o:p></span><span style="color: black; line-height: 115%;">I gathered my
children together and we said goodbye to Daisy, telling her to go and dance in
the stars with her daddy......it was a medicalised death but it was a good
death, we had some control, I knew that I had done everything possible to
support Daisy and I knew when it was time to let her go.</span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">Our palliative nurse
liaised with the hospice and a cold mattress was set up on Daisy’s bed at home
and we brought our girl home to rest, no longer attached to tubes and monitors,
just a little girl at peace in her bed.</span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><br /></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">Daisy lived for
twelve years but excellent hospice and palliative care support meant that those
twelve years were filled with happiness and joy, despite her deteriorating
body.<span style="mso-spacerun: yes;"> </span>That is what sustains me, a year
later.</span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">I am one of the lucky
ones, I am privileged.<span style="mso-spacerun: yes;"> </span>I am educated,
middle-class and English is my first language.<span style="mso-spacerun: yes;">
</span>I live in an affluent borough of London within easy reach of Great
Ormond Street hospital and a first class children’s hospice….yet I had to fight
constantly for support.<span style="mso-spacerun: yes;"><br /> </span></span><span style="color: black; line-height: 115%;"><o:p> </o:p></span></span></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;"><o:p><br /></o:p></span><span style="color: black; line-height: 115%;">I fought hard to
ensure that Daisy was just a little girl, not a patient, not a diagnosis….to do
this I learned complex care regimens, I was supported by an excellent hospice
and palliative team, I fought to get her the support of a nurse to go to school
two days a week, to have funded respite breaks, to have overnight care….so much
of my time was spent fighting, it shouldn’t be like this.</span></span></div>
<div style="line-height: 115%;">
<br /></div>
<div style="line-height: 115%;">
<br /></div>
<div style="line-height: 115%;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: black; line-height: 115%;">Everything I did for Daisy was for the love
of her, she was my girl and I wanted her to have a childhood….all I was asking
for was the support to be allowed to do this without being brought to my knees
in the fight.</span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">My fight continues
now.<span style="mso-spacerun: yes;"> </span>Excellent funded care and support
for the families caring for the sickest and most complex children in the UK
should be a right, not a privilege.<span style="mso-spacerun: yes;"> </span>It
should not depend on where you live, or how loud you shout or how well you
manage to negotiate the system.</span><span style="color: black; line-height: 115%;"><o:p> </o:p></span><span style="color: black; line-height: 115%;">It should be there to
support and help the thousands of families across the UK like mine so that can
enjoy precious time with their child not matter how long or short their
childhood.</span></span></div>
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<!--StartFragment-->
<!--EndFragment--><br />Stephanie Nimmohttp://www.blogger.com/profile/17837022520852263952noreply@blogger.com0