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.

The Children's Hospice Crisis, part of a bigger problem....

It was my birthday this week, another turn around the sun and another year I'm grateful to be alive and brimming with plans.

But instead of enjoying a lie in and breakfast cooked by my chef-in-training youngest son, I was up at stupid o'clock, necking a coffee before driving down the A3 to the BBC Surrey radio studios to respond to a news item they were running.

It was about the funding crisis in children's hospices, particularly Daisy's hospice, Shooting Star. 

Anyone who knows our family knows how important the support of Shooting Star was, and is, to our story.  How Daisy was referred at 6 months and from that time onward we knew that we had someone walking a path alongside us, caring not just for Daisy but the family as a whole.  Respite breaks away from the home were as important as visits by our hospice at home nurse.  And siblings days and a range of therapies gave our other children their own space.

Daisy was supported by Shooting Star Hospices for 12 years, they were there at the end of her life and continue to support our family now.  The staff there learned the complex procedures needed manage Daisy's care so that I could get a break, they worked in close partnership with the palliative care team to provide a joined up plan, they were there to catch us when our family dynamic fell apart and Daisy's daddy was diagnosed with terminal cancer. 

All of their care, all of their support, at no cost to us, at no cost to social services, at no cost to the taxpayer.

This is why I get up on my birthday and speak on the radio.  This model is unsustainable and it's indicative of a huge problem in how we support and care for all families caring for children with the most complex needs in this country.

Children's hospices are not funded by the government.  OK, well I'll qualify that, children's hospices receive minimal guaranteed funding from central government sources, in Shooting Star's case this amounts to 10% of their income.  The rest is made up from donated funds; from coporate sponsors, from people running marathons, from volunteers shaking the collecting tin.  Year in year out children's hospices have to raise millions to fund services that are increasingly reaching breaking point.

On Monday Shooting Star Hospices announced that they would halve the respite care they are currently offering and support only those children who were close to end of life.  Last week Acorns Children's hospices announced that they are planning to close one of their sites as there are simply not enough cash reserves available for the charity to keep three hospices running.

Medical science is incredible.  Breakthroughs over the past few years have meant that life expectancy for sick children has increased.  Without the drugs and interventions that Daisy received she would not have lived for twelve years, children are leaving neonatal units who would previously not have survived.  But in many cases children are coming out of hospital with the most complex of care regimens; machine dependent, with multiple therapeutic needs and complex drug charts....and this is where it is all starting to break down.

While medical science has advanced and children are living longer, the reality is they are still life limited and therefore need support services for longer.  Support services like those offered by a children's hospice.  When Andy was at end of life , he received support from the outreach team from our local adult hospice, it only lasted for a few days as that was all that was needed and I subsequently discovered that our local clinical commissioning group contract to the hospice to supplement their community based nursing teams and offer palliative care in the community.  No such model exists for paediatric palliative care.  Our community nursing team was understaffed and stretched to capacity.  they provided support during the week, any overnight emergencies had to be dealt with by a trip to A&E , normally via ambulance.  Clinical Commissioning Groups lean heavily on children's hospices to plug these gaps.  Providing respite support for children with complex needs is both expensive and requires highly skilled staff, and hospices simply cannot continue to operate without a guarantee of funding.  Or rather they can operate but they will have to cut the number of children they can support....

Last December the government pledged £25m support for children's hospices, however they have now reneged on that promise, none of that support has been forthcoming and the result is that hospices are closing beds, they are reducing the support they are able to give families.

This is all part of a wider issue in funding paediatric palliative care and social care funding for children with disabilities as a whole. 

Excellent palliative care enabled me to make plans for Daisy's end of life, it enabled me to give her a good death but this was provided through a combination of voluntary and commissioned services and we were lucky, the postcode lottery meant that we were supported by a hospice able to provide the level of care Daisy needed.  I fought hard for the continuing care package that was needed to keep Daisy at home and out of hospital, but even with support I was on my knees trying to juggle the complex medical regimens with caring for my other children , and subsequently for Andy. 

Everything is a battle, it's a fight.....and it's a symptom of the lack of support and funding across the entire sector.  Not only are children's hospices struggling to provide the care needed for an ever increasing number of children, for longer and with the most complex of medical regimens, but those families are also not supported by commissioned community-based services in order to care for their child safely and away from a hospital ward.

I was terrified that I would make a mistake that could cost Daisy her life. I was administering drugs on my own at home that would be double-checked on a hospital ward, I will never forget the moment Daisy had an anaphylactic reaction to an intravenous antibiotic I was infusing, when I was alone in the house....

The Disabled Children's Partnership (a coalition of more than 60 organisations campaigning for improved health and social care for disabled children, young people and their families) estimates that there is a £434million funding gap in children's social care.

No wonder parents are on their knees, the hospices that they turn to for support are finding it increasingly difficult to care for all of the children needing help in their area and children's social care services in the community are massively underfunded.  The ripple effect as always reaches far and wide.  It's about families, my other children only had one chance of a childhood , this was almost my mantra when I pleaded my case for extra support to keep Daisy at home. 

I was lucky (oh the irony), when Andy was diagnosed with cancer, extra support was put in place, and we had the hospice there to provide that all important safety net.  Without that support?  Would Daisy have lived for so long, would we have been able to spend as much time at home together as a family, would I have been able to hold my husband's hand as he took his last breath knowing that my disabled child was safe and cared for?

So this is why I will never turn down an opportunity to talk about the importance of funding for paediatric care and social care.  We are failing our most vulnerable families.

Next week is Children's Hospice Week.  Together for Short Lives, the children's hospice and palliative care charity,  will be continuing to highlight the fact that the government has reneged on it's promise of funding for Children's hospices.  In addition , The Disabled Children's Partnership continue their campaign to address the shortfall in children's social care funding through their #GiveItBack campaign.

Those of us caring for the most complex children face a battle every day to keep them alive, we shouldn't have to fight for the services to support us.

A&E is not a dumping ground

Before children  I had never paid a visit to the local accident and emergency department as an adult.  When my first three came along I had a few visits there, mainly for high temperatures which were not responding to the usual treatments at home, two of those visits resulted in Xanthe being hospitalised for care so clearly my instinct that this was a genuine medical emergency was right.

Daisy's discharge from the neonatal unit also came with a gold plated, annual pass to the local A&E department however.

For the first few years after premature birth children are much more susceptible to infections which are far more serious than the usual childhood bugs, we were in and out constantly.