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.

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.

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.

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 🌈

Is 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.

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....

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.

 We have come to rely on wellness and on science being able to help, to intervene, to make things better.

And this is why we are currently paralysed by shock and fear.

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.

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?

 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.

This is the reality of thousands, day in day out, forced to self isolate in order to protect their loved one

And now we have a global pandemic and I see people questioning government and health professional advice, panic buying, confused and complaining.

So here are some facts as I , as simple lay person who just happens to have a lot of health care experience, understands them.

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.

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 .

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.

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.

And those who care for them and those we rely on to care for us.

If we are ill we expect doctors and nurses to be there, but what if they are ill?

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.

So what can you do?

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.

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.

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.

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.

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?

This is our wake up call.