Daisy would have been 18 this month

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.

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
Daisy watching Disney on Ice's Frozen on her 12th Birthday

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.

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.

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.

And so our story began, and the life I once knew was replaced by a very different life.

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.

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.

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.

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.  

Daisy died in Great Ormond Street hospital's intensive care ward on the 31st January, just one month after her twelfth birthday.

And now her 18th birthday has just passed, the sixth birthday that she hasn't been here with us.

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.

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.

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.

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.

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.

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.

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.

"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.  

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.

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?  

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.

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.

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.

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 recent study shows that there is a clear link between higher incidence rates of common and serious physical and mental health problems and death in mothers of children with a life-limiting condition.

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.

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).

There are words of advice I give my friends over and over and they're always worth repeating:

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.

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 Office of the Public Guardian 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).

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 .

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.

As another best interest case hits the headlines - what needs to change?

 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.

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 treating him have said they believe it is "highly likely" he is brain-stem dead and argue it is in his best interest for life-support to end.

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.  

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 decision for more context).

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.

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.

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? Court judgements and appeals?

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.

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?

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".

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.   

So I thought I'd try and summarise them through my long neglected blog:

(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):

1. The doctor/patient (or in this case parent) relationship has changed dramatically.

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.

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?

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?

2. Is "best interests" an appropriate approach?

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:

“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"

"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  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.

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.

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 I had to make.

3. How are we supporting parents who find themselves parachuted into this alien world?

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.

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.

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.

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)?

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.

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 PALs services. 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?

 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.

4. So when a disagreement occurs, what should we do?

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?

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 Medical Mediation Foundation 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.

Would the offer of more widespread mediation services prevent disputes escalating into conflicts? Would they prevent cases reaching court? 

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.

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?

5. Ethics and the scientific conundrum

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.

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.

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.

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?

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.

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.

So back to the Archie Battersbee case...

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.

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.

Clinicians are trying to help them, drawing from whatever skills, experience and support they have.

it's an awful situation. Human beings trying to do the right thing, with a child at the centre.

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.

So  (in my opinion) the questions we as a society need to be asking are:

  • How do we help parents, parachuted into this world, make sense of it all?
  • How do we help clinicians and parents sit together and resolve conflicts?
  • How can we do better for everyone involved?
  • How can we do better for the child at the centre of it all?

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.

How do we humanise the dialogue, it's not them and us, it's human beings trying to navigate a flawed process.  

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. 

Tonight my thoughts are with Archie, his parents, his doctors, his nurses...all trying to do their best, all living through the unimaginable.

An update about my new book:

Earlier this year I announced that my third book, Anything for my child - parenting at the edge of medical science, was to be published by Oxford University Press.  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.

 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.

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.

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.

And because of this I won't give up.  

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. We are all one catastrophic event, gene mutation or diagnosis away from our lives changing forever. I'm living proof of that.

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.

( please get in touch via this blog if you want to know more about Anything for my child)

Anything for my child - book cover reveal

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.

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.

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.

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.  

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.

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.

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.  Anything for my child 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.

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.

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.

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.

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.

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.

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.

Before Covid times I was asked to speak at an auction at Christies on behalf of Wellchild, 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 Patrick Hughes on the wall to my left.  

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.

So here it is, isn't it wonderful?

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.

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.

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.

And me - I'll get through this Covid isolation , yes Christmas will be tough on my own, but I've been through worse.

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.

When going to hospital is the only option

 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.

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.

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.

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.

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.

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.

I received my first vaccine a week ago.

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.

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.

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.

This feature 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. 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.

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.

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.

photo of the broadcaster Jo Whiley with her arms around her sister Frances

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 article for iNews.

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.

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.

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.

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!

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 announcement was made and now people with learning disabilities will be prioritised to receive a vaccine.

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.  

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. 

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?

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.

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.

Photo of Daisy in a hospital bed with Steph in bed cuddling her

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!).

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.

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.

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!

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.

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?

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.

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.

So what can be done?

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. 

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.

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.

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.

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.

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.

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.

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.

Black and white photo of Steph lifting Daisy out of a hospital bed taken from the door of the room

Life begins at.....


When I turned 50 I felt it was a new beginning, a time to look forward, to embrace my new life.

I was back at work, dipping my toe in online dating and busy with multiple writing and speaking engagements.

I was creating a new life, meeting new friends, carving out a new path....but things didn't feel right.

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.

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.

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.

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...

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.

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.

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.

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.

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.

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.

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.


Protecting the herd

I 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.

Picture of Daisy in her wheelchair in the back of her wheelchair van. She is smiling and happy , on her way to school

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.

The invisible army

Photo credit: George Arthur Plueger @Unsplash

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.

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.

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...

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.

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.

These carers are the invisible army.

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.

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.

Today the government included the statistics for care home deaths in their overall Covid death rates.

It's harrowing.

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.

And to know that day in day out there are people risking their own lives with minimal support and protection - it's sobering.

"What can I do? What can we do?" I asked my friends.

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....

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.

Maybe when we are thinking about taking cakes and treats to hospital staff we could also include the invisible army facing an impossible task.

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".

These are the people who care for our senior citizens, people who deserve better as they care for people in their final days.

Let's shine a light on them, they deserve so much better.

Maybe 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.

I remember feeling numb and scared and confused at first and then, I settled into a routine, I went with the flow.

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.

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.

And in a strangely familiar way I've settled into lockdown life.  From my previous post 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.

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.

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.

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.

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 .

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.

But for the world I really hope that we take away two things:

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.

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.

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.

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.

If you read my blog regularly you know this (here's a particularly relevant post).  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.

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.

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.

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:

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?

2.Write an advance directive.  I've written about this here . 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.

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.

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.

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.

Right, that's it, I'm off for my daily exercise, of course I don't walk, I run, some things will never change!

Sending love to all of my lovely friends working on the NHS frontline - stay safe, you are always in my thoughts 🌈