Together for Short Lives
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Short lives can’t wait for another election; we need to make this one count.

News and comment

After months of speculation, the general election has been called, Parliament has been dissolved and the parties’ campaigns are now in full swing. In the midst of all the news and announcements, I wanted to take a moment to reflect on the fact that many seriously ill children will not be alive in five years’ time. This election is therefore a vital opportunity to ensure that seriously ill children and their families can access the palliative and end of life care they need as soon as possible.

Seriously ill children can have complex and unpredictable conditions and often need round the clock care provided by their families, seven days a week. They may need palliative care from the point at which their condition is diagnosed or recognised until the end of their lives, in a mix of settings that include hospitals, their homes and children’s hospices.

When provided to a high standard, it can make a real difference to the lives of seriously ill children and their families and can help them make the most of the moments they have left together.

Despite this, far too often, children with the most complex health needs and their families experience care that is disjointed, uncoordinated and lacking in many vital areas.

This is particularly the case when it comes to accessing end of life care at home, 24 hours a day, seven days a week. With only a third of local NHS areas across England currently meeting this quality standard, sadly it seems that for many families, the ability to access this care really does depend on where they live.

Driven by significant workforce shortages, a lack of accountability among local NHS and council bodies and a significant funding gap of £295 million, this is something we desperately need to change.

Giving families real choice is key to children’s palliative care. But in the absence of a sufficient workforce, adequate accountability, and an appropriate level of sustainable funding, ensuring families have real choice becomes increasingly more difficult.

The next UK Government can make a vital difference to seriously ill children and their families by helping them to achieve the best possible quality of life and end of life care.

Together for Short Lives is therefore asking all political parties and candidates contesting the election to commit to the following action:

  1. Review the way in which children’s palliative care is funded and fill the £295 million annual gap in NHS spending on children’s palliative care in 2024/25.
  2. Fund lifeline voluntary sector providers in England – including children’s hospices – equitably and sustainably for the long-term as their costs increase. In England, this should include a commitment to maintaining ringfenced, centrally distributed NHSE funding for children’s hospices beyond 2024/25 which increases by at least the rate of inflation.
  3. Fill the £2.4 million annual funding gap in GRID and special interest (SPIN) training in palliative care for paediatric consultants – in addition to other funding gaps in educating and training other professionals, including community children’s nurses.
  4. Commit to action across the UK to use the existing children’s palliative care workforce more effectively – and to increase the number of professionals who have the skills and experience to provide palliative care to children with life-limiting conditions across a range of different roles.
  5. Hold local NHS bodies and councils to greater account for implementing the existing policy frameworks relating to children’s palliative care.

Members of the public can support by signing our open letter to the next Prime Minister to let the government know that every life, no matter how short it may be, deserves the best care.

Time is short for seriously ill children and their families. It is therefore vital that the next UK Government commits to this action to ensure they can make the most of every moment that they have left together, because short lives can’t wait.

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