Increase the Children’s Hospice Grant

Together for Short Lives is calling on NHS England to keep its promise to protect the Children’s Hospice Grant – and go further by increasing it to £25million per year. Please add your name now to this open letter from Gabriella Walker, a bereaved parent, to Health and Social Care Secretary Matt Hancock, by completing the form below.

Our new survey has found that NHS and local council cuts are hitting lifeline care for seriously ill children. This news comes as NHS England chief executive Simon Stevens’ commitment to protect and increase children’s hospice funding is not being met. With proposals already having been made to close Acorns Children’s Hospices’ site in Walsall, we are worried that this could be the tip of the iceberg and more children’s hospice services may be at risk.

What’s the problem?

Children’s hospices are receiving a lower level of funding from the state than ever before, forcing some hospices to cut back services and others to face closure. At the same time the cost of providing palliative care to children with life-limiting and life-threatening conditions in children’s hospices in England is increasing, as are the number of children needing support and care from these vital organisations.

Our recent survey of children’s hospices found that:

• Overall, the level of funding children’s hospices receive from the state has dropped to 21%, down from 27% in 2013/14.
• The average amount given to each children’s hospice charity by local NHS clinical commissioning groups (CCGs) fell by 2% between 2016/17 and 2018/19.
• 15% of children’s hospice charities receive nothing at all from their CCGs.
• There was 4.5% increase in the amount that children’s hospice charities spent each year to meet the needs of seriously ill children and their families between 2016/17 and 2018/19.

This combination of falling funding and increasing costs is hitting our most vulnerable children and their families. Many children’s hospice charities have been left with no option but to cut back crucial services. In our survey, a fifth (19%) of children’s hospice charities revealed they have had to cut vital short breaks for respite.

What can I do about it?

On 27 December 2018, NHS England Chief Executive Simon Stevens had announced that, over the next five years, up to £7million additional funding would be made available to children’s hospices each year on top of the existing £11million Children’s Hospice Grant, if CCGs also provide additional match funding.

However, NHS England subsequently rowed back on this promise in its Long Term Plan. Instead, this stated that the additional funding would not be exclusively for children’s hospices. Since then, Together for Short Lives has also received no reassurance from NHS England or government that the children’s hospice grant will still be available beyond 2020.

In response to this news, Gabriella Walker, mother of Thea Walker who died in February this year aged two years and nine months as a result of Niemann-Pick disease type A, has written an open letter to Health and Social Care Secretary Matt Hancock. In the letter, Gabriella describes the support Forget Me Not Children’s Hospice provided to her and her family, allowing them to spend the years they had together as best as they possibly could.

However, Gabriella points out that diminishing funding threatens the sustainability of these services. She is now inviting children’s palliative care services, families of children with life-limiting conditions, and the general public to add their name to her letter calling for urgent action.