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.

My speech at the Houses of Parliament (for Together for Short Lives)

I'm so busy at the moment, it's crazy!  Juggling the demands of my day job three days a week with freelance commitments and campaigning on behalf of families like ours.  Families who are caring for the sickest children in the UK and those who are grieving the loss of their child...

It is this work, my campaigning work, which gives me the most pleasure and fulfilment.  It isn't about simply telling our story, it's about working with some of the biggest influencers in the palliative care sector to effect change, to really make a difference.

Tonight I'm in a hotel in Bristol and tomorrow I will join a closed event of academic and medical influencers discussing how we manage end of life care in the UK.  In the evening I will be speaking at a public event looking at what needs to change, how we can do things better.

It's another night away from my children but it's another opportunity to change hearts and minds, to learn from what has gone well, what has not gone well and to continue to move forward in engaging the public in open conversations about how we talk about death and how we care for those who are life limited.

Earlier this week I attended an event at the Palace of Westminster as an ambassador for the children's palliative care charity, Together for Short Lives.

I'm one of the lucky ones.....

"your positivity is infectious" a twitter follower once told me after I had spoken at a book festival.  I know, I am one of those annoyingly glass half full people who really does try and see the positive side of every situation...

I count my blessings....I understand my privilege...

I understand that the experiences and life I was able to give Daisy when she was alive came from this privilege.  I used skills honed in a successful business career to negotiate and navigate complex systems of health and social care so that I could fight to get the best support for my family.  We live in our own home, in a nice London suburb, in easy reach of a centre of excellence in paediatric care and a children's hospice..

Everything was in place so that when Andy died I was supported in caring for Daisy through my grief and when she reached the end of her life we had already had the difficult conversations, I knew what she wanted, I knew that we had given her the best quality of life possible.  After she died I was able to bring her home to rest.  The children and I were supported through our grief and loss and able to adjust to our new life without Daisy.

I had confidence, life-skills and experience on my side and these all ensured the best outcomes for our family, despite the fights and stress.... I was still one of the lucky ones.  When Daisy was alive we were supported, we received respite breaks, some funded support in the home, excellent palliative care...

It was not perfect but it was so much better than many families like ours.

It should not be like this...it should not come down to a postcode lottery.  It should not be about having the skills and confidence to speak out.  Families caring for the most complex children in the UK should be receiving support regardless of where they live or their ability to shout the loudest.  When a child is terminally ill families should be supported in making plans and optimising their child's quality of life.  When the child dies they should be supported through their grief and afterwards.

Families caring for life-limited, complex children need support, they need to be allowed to focus on their child, not the fight.

I had so much in my favour and yet I still had to fight....

Now, after Daisy's death, I spend all my spare time using my privilege to fight for the other families, I don't want excellent palliative care and end of life planning be down to a postcode lottery.

Earlier this year I spoke at an All Party Parliamentary Group on children who need palliative care.  The report of that group is launched tomorrow in the House of Commons and I will speak again, to an assembled group of all party MPs and members of the House of Lords.  Once again I will share our story, I will talk about the constant stress, the unbearable fatigue and the fight that every family caring for a life limited child has to go through, but I will also tell them about the utter joy that Daisy brought to us in her short but important life.

And when I speak, as always, I speak for all of the families like ours, those who are grieving their child, those who continue to fight.  One day, maybe I won't have to speak out, one day families who care for the most complex children will be able to be families and make the most of their precious time together.

You can read about the work Together for Short Lives charity has been doing with the All Party Parliamentary Group here.

Video: Palliative Care Talks

I few months ago I was interviewed by Lucy Watts as part of a series she is running called Palliative Care talks, it was great to participate alongside best-selling Irish author Sharon Thompson too.  Sharon is also a bereaved parent and I was shocked to learn that Ireland only has one dedicated children's hospice....

It's never about giving up

Palliative Care. It's been in the news a lot this week.  And as I've seen yet another case of a child who needs a referral to palliative care being played out on social media I realised how little people really understand by the term.

All this week I have seen the negativity associated with the words and it has shocked me.  Because the perception that those people on social media had on social media bore no relation to the reality we had experienced.

We knew from the beginning that Daisy was life limited.  That she would not reach adulthood.  She was born with a sporadic gene mutation that increased her risk of cancer, sudden cardiac events, complex disabilities.  We know that many of the children with the same mutation do survive to adulthood, there are some who are in their forties even.  But Daisy was always going to be different.  She seemed to have an extreme form of the syndrome, potentially a secondary undiagnosed syndrome at play.  It was clear that there was too much going on and too much need for constant medical intervention to be conducive to a long life.

Andy and I accepted that from the offset.  We knew our time with Daisy was finite.  We were just determined to make the most of our finite time with her.  And that's where palliative care was so important.

Daisy was referred to the hospital palliative care team when she was seven.  I, like many others, assumed that palliative services were only brought in at the end.  I now know so much more.  That early intervention by palliative services was crucial, it contributed to ensuring that we were able to focus on Daisy's quality of life.  In fact the words used regularly by the consultant caring for her were "symptom control".  Daisy's pain was getting out of hand, she was on so many drugs it was difficult to know what was a drug side effect and what was pain.  With the help of the palliative consultant we were able to wean Daisy off some of her drugs so that we could identify which were the most effective in treating her pain.  A symptom care plan was developed so that everyone caring for Daisy understood what medication and doses were available and how to escalate them.

Some nights at home when I struggled to control Daisy's pain (her pain was always so much worse at night) there was always a member of the palliative team on call who could advise me.

We discussed our priorities for Daisy.  Optimising her time at home, minimising her time in hospital, maximising her quality of life and preparing plans to ensure that when the time came we would know and we would be able to support her in having a dignified death.

We made it clear that we wanted to ensure that Daisy was able to do the things she wanted to do; go to school, spend time with her family, be a little girl.  With her team we decided that as the window of Daisy being able to do the things she wanted to do closed we would constantly assess the situation.

I look back now and we did exactly that.  Daisy's deterioration was slow but it was obvious.  She lost the ability to walk, she developed severe seizures, her ability to communicate was reduced, she became more and more lethargic but this happened very slowly over a prolonged time frame and with the help of the pallitiative care team both at the hospital and the hospice we were able to support Daisy and optimise her quality of life.

Any procedure, test or surgery was always decided against the main criteria; "Will this improve her quality of life".  She had a couple of big surgeries in her final years, I know that there were discussions at an ethics panel about whether it was right to put her through more major surgery.  In the end we took the risk, her final surgery, while Andy was still alive, made a huge difference to her pain and we were glad that everyone agreed it should go ahead.

We talked about end of life plans.  These were always very open, frank discussions.  The doctors could not give us answers about when she would die or how, they did not know themselves.  She was always defying the odds, she would be overwhelmed with sepsis and we would prepare for the worst and then she would turn the corner.  We knew what all the options were however.  We allowed ourselves to think of the end of her life so that when it came we would be prepared and know what we wanted for our girl.

The irony was that those conversations with the palliative care team were even more important because it enabled Andy and I to be on the same page about how we would support Daisy when she was at the end of life stage.  We both agreed that we would not go down the route of a tracheostomy for her if that was the only option, she was already dependent of 24/7 intravenous nutrition to live and had four other stomas beyond her double lumen hickman line.  At least after Andy died of cancer just before Daisy's 11th birthday I knew that we were both in agreement and these things had been discussed.

Daisy's health deteriorated rapidly after Andy died.  That window of life quality I had discussed with our consultant was closing.  I remember the Christmas before she died, I just wondered how much we were now playing God.  She was struggling to keep going, her frustration was manifesting in challenging behaviour, she was becoming tired, she was losing more and more of her skills, we were losing Daisy.

When Daisy was taken into intensive care overwhelmed with sepsis it was still difficult to see that this was the end.  We had all seen her turn the corner from this point so many times.  But this time was different.  Everything the doctors tried did not work.  They had worked before.  She was struggling and exhausted.  She was sedated and a breathing tube was put into her lungs and she was attached to a ventilator.  I hoped that it would allow her body to rest and fight the sepsis.

But then her heart stopped beating and as I ran into her cubicle to see the doctors performing CPR on her I knew that I had to let her go.  I knew Andy would say the same.

I asked the doctors whether we could transfer Daisy so that our hospice team could come and switch off the ventilator at home.  I knew from previous conversations around end of life plans that compassionate extubations could happen at the hospice so why not at home?  But she was too unstable, she risked  dying in the ambulance en route.  This was not what I wanted.

The doctors successfully started Daisy's heart again but I knew that she was gone.  They talked to me about starting dialysis, about other life support interventions but I knew that our window had finally closed and it was time to say goodbye.

 I let my girl go.

It was the hardest thing I have ever had to do but I know that despite the fact that we were in a hospital, in a highly medicalised setting, we gave Daisy a good death, she was surrounded with love, we had given her everything we possibly could, we had left no stone unturned in ensuring she had the best life possible.

Our palliative nurse was with me when Daisy died.  We had known her for many years.  She helped the other nurses remove the medical equipment, she liaised with the hospice and the undertaker, she knew what to do .

Daisy's palliative consultant cried.  Just like many of the nurses and doctors who had cared for Daisy over the years they had got to know the little girl beyond the patient and they were as devastated as we were.

Daisy was moved to the bereavement suite on the ward and nurses came in and helped me wash her.  That evening we went home .  Our hospice nurse had set up a cold mattress on Daisy's bed and when the undertaker arrived they tucked Daisy back into her bed for one last time.  She was home.

Palliative care gave my daughter a good death.  It gave us options.  It gave us support and most importantly it gave us the gift of time with Daisy.  I accepted her life was limited, deciding to no longer pursue active treatment unless it was to enable her to have a good quality of life was empowering.  It was never, ever about giving up.

I have shared our story because I have realised that there are so many misconceptions about children's palliative care.  The reality is sometimes there is no cure and children die,  sometimes doctors do not have all the answers, sometimes medical science can only go so far.  It's about time we had more open conversations about these issues.