Children's Hospice Grant

02 July 2019

Children’s Hospice Grant

Last night it was announced in Parliament that the Children’s Hospice Grant will increase to £25m, ringfenced for hospices and distributed centrally rather than through a complex matrix of local NHS organisations.

This is the entirely successful outcome of a campaign fought by children’s hospices, our national advocates Together for Short Lives and Hospice UK, the All-Party Parliamentary Group for children’s palliative care, and lots of other helpful and influential/persuasive people.  It is everything we have asked for in this particular campaign.  We are all delighted, and so grateful.

But I’ve been feeling just a little bit awkward, and guilty, throughout.  It’s a feeling I’ve put to the background and not vocalised but this is why: the most successful hospice campaign since the one that founded the grant in 2008 has once again been about organisations and their funding, not directly about families in need. 

Of course, the two are inextricably linked.  This campaign had to happen and was the right thing to do.  Hospices are already closing and cutting back due to a funding crisis, and if that goes much further the consequences for children with terminal conditions are dire.

But I suppose what I’m trying to say is that I would much rather be voicing a campaign that wasn’t just about the funding of organisations, but about the children and families too, because many of them are suffering unnecessarily.  They are not suffering needlessly because of the health needs of their children, but because they are not getting the services, support or in some cases income which is required to lead a decent life when you have a child or children with very serious and complex conditions.

The best bit of yesterday’s announcement is the bit we haven’t given as much attention to yet, but it’s potentially much, much more important than hospice funding, as important as that is.  This is a quote from Simon Stevens, CEO of the NHS:

“We also recognise that palliative care services provided by children’s hospices are currently not universally available. We will therefore run a needs assessment to understand whether additional investment nationally or from CCGs is required where palliative care is provided by other means.”

This is hard to decipher.  But what it could mean is a wider examination of children’s palliative care in its entirety.  That could lead to an understanding of what must be available in every area, and a funding settlement that will deliver it.  This is massive because:

  • Support to families with palliative care needs is inconsistent to a huge degree, with black holes of lack of service in some areas that don’t even know there are black holes
  • This doesn’t just cover children’s hospices; it’s everything (NHS, social care, education, communities…).That’s a total budget that dwarfs £25m by an amount I can’t even work out, but it’s substantial
  • For the first time children’s hospices and statutory services could be looked at as a single system, not the statutory system plus hospices as a nice-to-have on the outside.That will involve hospices having to get over their inherent isolationism and start to fit in better.I’m up for that challenge
  • For the first time ‘children’s palliative care’ might be considered as a defined category of service delivery.It is what children’s hospices do, but in the statutory world at local level the specific field of children and young people with terminal conditions is not seen as a service area in itself – it is a small subset of the overall sphere of children with disabilities.There is some government and clinical guidance which covers palliative care, but it tends to be focussed on the end of life stage, not on whole-life care

There will be battle lines and engagements drawn up and questions that need to be answered.  If we all get it wrong, then essential services like short breaks, post-bereavement care or support to siblings might get left out.  If we get it right, we might find the best way to spend the limited resources we have.  That would be a million miles better than what we have at present.

I am delighted to be sitting on the NHS working group looking at this.  A working group can’t do it though.  It will also need widespread engagement from local statutory bodies for instance.  And it needs to be guided by the young people and families affected.

Children’s hospices are great at being a rallying call for the voice of children and families.

Now THAT is what I want to be campaigning on….


- Ryan Campbell CBE, Chief Executive Officer