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NHS England protects £25million for children’s hospices following Together for Short Lives’ campaign

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Child in children's hospice bed

UK children’s palliative care charity, Together for Short Lives, has welcomed NHS England’s decision to ring fence £25 million of NHS funding to support children’s hospices by 2023/24, increasing annually from this year’s baseline of £12 million.

This welcome pledge will take the pressure of children’s hospices and better enable them to plan and deliver lifeline care and support to some of England’s most seriously ill children. The funding will come directly from NHS England and will no longer rely on match funding from clinical commissioning groups (CCGs), which is very good news for those delivering children’s hospice care across England.

NHS England also says that it recognises that palliative care services provided by children’s hospices are currently not universally available. It plans to carry out a needs assessment to understand whether additional investment nationally or from CCGs is required where children’s palliative care is provided by other, non-hospice services.

NHS England’s decision follows Together for Short Lives’ long-term campaign calling on the government to:

  • Increase the Children’s Hospice Grant to £25 million.
  • Provide parity of statutory funding between children’s and adult hospices
  • Develop a fully-funded children’s palliative care strategy.

Our campaign has been widely supported by children’s hospice organisations, families caring for seriously ill children, bereaved families and thousands of the charity’s supporters. The All-Party Parliamentary Group for Children Who Need Palliative Care, including co-chairs Dr Caroline Johnson MP and Catherine McKinnell MP, have played a key role in raising this issue with ministers in Parliament.

In June 2019, Together for Short Lives published new research on statutory funding for children’s hospices in England which revealed that NHS and local council cuts are hitting lifeline hospice care for seriously ill children. Currently, children’s hospices receive on average just 21% of their funding from statutory sources, compared to 33% for adult hospices. Children’s hospices rely on donations and fundraising for the remainder of their costs.

Andy Fletcher, Chief Executive for Together for Short Lives said:

“This is a really welcome commitment to invest in children’s hospices at a crucial time. We know that the number of children with life-limiting conditions is growing and the care and support they need is increasingly complex. With this complexity comes greater cost and I am pleased that NHS England has listened to concerns raised around a growing funding gap.”

“All children’s palliative care services, delivered in hospitals, children’s hospices and the community, need equitable and sustainable funding, so it is most encouraging to hear that NHS England has also pledged to review the wider availability of children’s palliative care to understand what additional resources are needed across the sector. Today’s announcement will give children’s hospices more confidence to plan and deliver their services and provide vital support to meet the needs of seriously ill children and families.”

“I would like to thank those who have supported our campaign, including bereaved parent Gabriella Walker and the 1,600 people who have signed her open letter to Health and Social Care Secretary Matt Hancock pressing for this change. I also pay tribute to the cross-party coalition in Parliament, including ministers, who have supported this funding boost. This has been spearheaded by the All-Party Parliamentary Group for Children Who Need Palliative Care, and in particular Dr Caroline Johnson MP, Catherine McKinnell MP, Jim Shannon MP, David Linden MP and Baroness Brinton.”

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 provide much-needed confidence that will enable children’s hospices to maintain and deliver their services to seriously ill children, and in doing so help reduce pressure on the NHS, keeping children out of hospital longer and supporting the wider family.

“This is a really welcome commitment to invest in children’s hospices at a crucial time. We know that the number of children with life-limiting conditions is growing and the care and support they need is increasingly complex. With this complexity comes greater cost and I am pleased that NHS England has listened to concerns raised around a growing funding gap.”

Andy Fletcher, Chief Executive for Together for Short Lives

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Comments

  1. I support this campaign fully.

    Date
    1 August, 2019
    Author
    Philippa Law
  2. […] NHS England protects £25million for children’s hospices following Together for Short Lives’ campaign see here […]

    Date
    19 July, 2019
    Author
    Hope for Acorns Black Country Children's Hospice in Walsall, as Closure Decision Put on Hold
  3. This is much needed resource and without this support many children and families would need to access acute services for symptom management alone on a much more frequent basis. This alongside the need fro planned respite fro all eth family is invaluable at a critical tiem.

    Date
    12 July, 2019
    Author
    Angie Walker
  4. I feel so sad to hear that Grace's place in Radcliffe may close very soon. It is unbelievably in this day and age that funding can't be found for a service that is so important to so many children and their families. life is for living and especially so for children who are palliative they should experience the best possible care in what little time they have left. NHS England and local CCG should make sure there is funding available now and in the future. Hospices are really important to the quality of life none more so than childrens.

    Date
    7 July, 2019
    Author
    S. Fairbrother
  5. Unless you have shared the life of one of these very special people, it is difficult to imagine the challenges that face them daily. In spite of their disability they have talents, opinions, a brain and a wish to take a meaningful part in life - which they are well able to do if given the chance. If so many other countries are able to treat their SMA patients, why not the whole of the UK and not just Scotland. In considering the cost of treatment, the value of the individual's life, their input to Society and their potential, how can this opportunity be denied to them. Recognition of the extreme demands on the NHS goes without saying, but somehow these young people and children must be treated according to their needs.

    Date
    4 July, 2019
    Author
    Janice Moore
  6. This is a sector which under any circumstances should not be compromised.

    Date
    4 July, 2019
    Author
    Jana Hovanec
  7. Please help - our local children's hospice is invaluable. It provides care, support - and fun!

    Date
    4 July, 2019
    Author
    Mary Fenton
  8. Both my children passed away, they had spinal muscular atrophy type 1, my son was 7 months old and died on 16/04/16 and just two weeks later my daughter passed away at only 18months old on the 3/05/16. Palliative care was essential for them along with other services. The Childrens hospice also offered a safe place for them to enjoy some time away from hospital when they were well enough. Funding is essential and necessary.

    Date
    4 July, 2019
    Author
    Sophie frood
  9. Both my children passed away, they had spinal muscular atrophy type 1, my son was 7 months old and died on 16/04/16 and just two weeks later my daughter passed away at only 18months old on the 3/05/19. Palliative care was essential for them along with other services. The Childrens hospice also offered a safe place for them to enjoy some time away from hospital when they were well enough. Funding is essential and necessary.

    Date
    4 July, 2019
    Author
    Sophie Frood
  10. This funding gap needs to be filled to ensure we can look after children and families who need us the most.

    Date
    4 July, 2019
    Author
    Ella Toll
  11. We are having to close one of our three hospices - it's hearbreaking!! Please do something to help the increasing number of families who need our help.

    Date
    3 July, 2019
    Author
    Kate Turner
  12. So they only have to wait 5 years before this extra money is available!

    Date
    2 July, 2019
    Author
    Alf Hayes