TOGETHER for Short Lives has welcomed the announcement that NHS England is increasing the vital children’s hospice grant from £11million to £25million, better enabling lifeline hospices to support some of England’s most seriously ill children.  

This much-needed increase in funding forms part of NHS England’s long-term plan and follows a campaign from Together for Short Lives and its members in which over 6,500 people joined the call for more sustainable funding for hospices in England. Together for Short Lives #fundnotfail campaign, launched in summer 2018, called on the government to increase the children’s hospice grant to £25million, provide parity of statutory funding between children’s and adult hospices, and introduce a children’s palliative care strategy.

As part of the NHS long-term plan, additional funding will be available each year over the next five years, increasing by up to £7m a year by 2023/24, if Clinical Commissioning Groups also provide additional match funding.

Prior to this funding commitment, children’s hospices received on average just 22% of their funding from statutory sources, compared to 33% for adult hospices. Hospices rely on donations and fundraising for the remainder of their costs.

Across England, 40,000 babies, children and young people with life-limiting conditions rely on palliative care to enhance their quality of life, manage symptoms and provide their families with much-needed help and rest. The number of these children is increasing and they need more complex care across health and social care services. The bulk of this 24/7 care is provided by families. Respite care provided by hospices is a lifeline for families, helping to relieve pressure on parents and siblings and maintain their physical and mental health. Crucially, many children’s hospices can also provide children with the choice of where they receive care at the end of their lives and support them throughout this journey, whether at home or in the community.

The funding will enable children’s hospices to maintain and develop their services for the most complex children, and in doing so help reduce pressure on the NHS, keeping children out of the hospital longer and supporting the wider family.

Andy Fletcher, CEO of Together for Short Lives, said: 

“This is a very welcome boost for children’s hospices which provide such crucial care and support to seriously ill children and their families across England. We know that the number of children with life-limiting conditions is growing and the care and support they need is increasingly complex. I am delighted that NHS England has listened to what we have been saying for some time about the gap in funding for local children’s hospices, which offer a real lifeline, providing vital care and support for families providing 24/7 care.”

“It is now vital that clinical commissioning groups to work closely with the NHS and local children’s hospices to ensure that services are there to support families now and in the future.”

Together for Short Lives’ petition calling for fairer and sustainable funding for children’s hospices was delivered to Downing Street on 11 September 2018 by representatives from the children’s palliative care sector. Toby Porter, CEO of Acorns Children’s Hospice which runs three hospices in the Midlands and last year supported more than 870 children and over 1,140 families, attended the petition handover.

Acorns Chief Executive, Toby Porter, added:  

“We are thrilled that NHS England has made the decision to increase the Children’s Hospice Grant. After many years where the grant has not risen, we welcome the recognition that children’s hospices face exactly the same cost pressures as the wider NHS and need more funding from the Government.

While 70% of our income comes from public donations, the Children’s Hospice Grant has become a critical source of income for Acorns and for the wider children’s hospice sector. There is a direct link between this grant and the amount of care we can afford to offer. As soon as we learn exactly when and how this increased funding will be applied, we can plan to extend our care to increased numbers of children and families. The best measure of success from today’s announcement will be an increase in the children’s hospice care received by children and families across England.

Welcome medical advances mean we need to plan and offer care for more children and young people with more complex health issues over long periods of time, and families are relying on children’s hospices more and more. The increase of this grant is important news for Acorns, for the children and families we support.”

Kirsty Murray, mother of Ella who died aged two from a rare genetic disorder called Miller-Dieker Syndrome – and who was supported by Acorns Children’s Hospice and helped spearhead the campaign – welcomed NHS England’s announcement:

“I am thrilled that we have been able to make a difference to all the children and families that use hospices and it is a testament to all those that work so hard to provide care and respite around the clock whilst supporting families and helping them to create such important memories. This is the best Christmas gift for all those families who rely on the hospices and I am so pleased that it has been noticed how important they are. This petition has proved to me that anyone can make a difference to the lives of others and I am over the moon that I got to be a part of it in memory of my little star Ella.”

NHS England has shown through this announcement that local commissioners have a clear role in funding children’s hospices; they should now take steps to match this important funding commitment. If they do, because of NHS England’s funding commitment, they could bring about parity of funding for children’s and adult hospices.

Children’s palliative care is provided across a range of services, including NHS and voluntary services in hospitals and community teams across England. It is crucial that the government and NHS England also set out a funded children’s palliative care strategy as part of the NHS long-term plan.