Supporting children and young people with life shortening conditions - & their families

Featured article - 18 March 2016
By Terry Moran, chair of ‘Together for Short Lives and SCIE trustee

Head-shot of the author, Terry Moran, chair of ‘Together for Short Lives and SCIE trustee

I’ll start with a fact that might surprise you: The vast majority of children with life shortening conditions never step foot inside a hospice. Those that do account for about 20% of that population. You might expect this figure to be higher because hospices do an amazing job and fulfil a vital role. However, for a number of reasons, the young people, their parents and other carers can choose not to use a hospice. It’s just that a hospice is often what people think about, if they think about, childhood death and dying...

As chair of Together for Short Lives I know that often the care and support that young people receive, alongside the work of the hospice movement, is found in the community. And that’s why one of the charity’s strategic priorities is community engagement and volunteering. We want to improve understanding of life-shortening conditions and to encourage care staff to explore a community approach to children’s palliative care, along with investing in volunteering.

It’s important to remember that there is a complex system that families of children with life-shortening conditions are all too often confronted with. It’s not as simple as just hospital / hospice care. The complications of adult NHS and social care needs, which SCIE often discuss, can be even more complex for the children and families that we and our members support.

And then there’s areas where SCIE has expertise, such as safeguarding and transitions.

Safeguarding is a real issue for a number of children and this includes children with life shortening conditions. It is vital that they are afforded the same protections and considerations as other children.

And transition from child to adult services is a key field, but all too often it can be planned poorly and disconnected, leaving those young people feeling like they are stepping off a cliff edge of care. So we know that it’s vital to provide good commissioning and to create and maintain sustainable services throughout the child/young person’s life.

I’ll be blunt. Together for Short Lives, as the UK charity that speaks out for all children and young people who are expected to have short lives, wants to see more funding. A total of 49,000 children and young people in the UK are living with a life-shortening condition. That means that 400,000 families are affected. We reckon it would cost £200 million per year to provide children’s palliative care. And at the moment, statutory funding for children’s palliative care is patchy and inconsistent.

But we also want to see families getting good quality information and support. We also want to see families receiving high quality care throughout life - and at the end of life - and to have access to staff and services that understand and meet the needs of more children and families in their diverse communities.

Children’s hospices play an important and pivotal role as part of a range of services that are on offer – or that should be on offer and properly funded – to meet the needs of children, young people and their families who are affected by life-shortening conditions. Too often it feels like that these needs are ignored.

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