Challenges ahead

As part of our wider conversation to inform the development of our new strategy we will be publishing a series of blogs reflecting on what great children’s palliative care should look like in 2028, what needs to happen to get there and what Together for Short Lives’ role could be in achieving that. Today we hear from David Pator, CEO of the Claire House Children's Hospice.

These are unprecedented times. Children’s Palliative Care has never been in better shape; paradoxically the challenge has never been greater.

At Claire House Children’s Hospice we realised two years ago just how many children we had yet to reach in our region, at the end of a year where we had helped more children and families than ever before. We found that for every child we reached, there was at least one we didn’t. That’s a heck of a wake-up call when we were celebrating a transformational year – every single person involved with the charity had given their all.

Our annual report shows a 61% increase in our active caseload over the last 5 years, a 95% increase in our bereaved caseload and a 558% increase in end of life care. We expect these trends not only to continue but get even more pronounced. The bar will continue to rise.

But that is as it should be. Claire House, and the many other organisations that provide vital services to the potential 49,000 children in the UK who may need palliative care support, does not exist to support only those who are lucky or desperate enough to stumble into our path. We believe we should do our very best to reach out to every child and family who may need our help.

And this is, in part, why the we’ve seen the numbers rise: We have invested significantly in our outreach work, including working in close partnership with others, particularly regarding end of life care, neonatal care and with those that commission services based on the needs of the children and families in our region.

We plan to develop truly integrated services uninhibited by our own internal and external boundaries which enable our region to support more children when and where they need it. Although we are creating a second hospice ‘hub’ in our area, we couldn’t care less if there are bums in beds – we will be measured by the difference we have been able to make.

This could be by getting a member of our stellar Care Team to the right place at the right time. It might be by introducing families to each other for mutual support. It might be by working in open partnership with other organisations either to influence change for the many or to support just one more child. It might be working more actively and collaboratively with the communities we serve.

This will not be easy. Resources are stretched throughout the system, and we are also dealing with the impact of these changes on our staff and volunteers; added to this great nurses are in great demand. We work with many fantastic commissioners but there some that still believe that money grows on trees and have no knowledge of children’s palliative care.

However, we believe in doing the right thing. This is why we will continue to reach out, which in turn will encourage us to continually change.

I hope to look back a year from now on another record year where we have changed the lives, and the deaths, of more children than ever before; that is why we’re here, and we must do whatever it takes to support the children and families of today and those that will reach in the future.

Challenges for the TFSL strategy

The top five things I would like to see the TFSL strategy address would be:

  1. How do we as a children’s palliative care movement speak with one voice in order to influence change nationally?

  2. How do we reach those most in need, not only those that are easiest to reach?

  3. We need far greater certainty over funding, and there should be a far closer relationship between activity and funding (more difference made = more funding)

  4. Identify the areas of greatest impact and focus attention on these. Neonatal care might be an example of this.

  5. Paint the picture of what great children’s palliative care looks like from multiple perspectives.

What do you think? 
Tell us what you think of this vision for Children’s Palliative Care by posting a comment below. You can share more detailed comments by completing this short survey. You can also submit your own blog to support this series by emailing emma.dixon@togetherforshortlives.org.uk

We are keen to hear from as many people as possible, so do share this blog with your stakeholders and networks. You can also engage with the conversation on Twitter, using the hashtag #forthe49000

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