Children's Charities Ask Why Government Won't Spell Out New Funding For Children's Palliative Care, UK

Main Category: Palliative Care / Hospice Care
Article Date: 18 Jul 2008 - 1:00 PDT

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Following the government's announcement today of £286m for adult end-of-life care in England, charities representing children's palliative care services, life-limited children and their families are asking the government why it is still refusing to spell out the funding for the children's palliative care strategy for England launched in February.

At the same time, charities welcomed the government's acknowledgment that more children with life-limiting conditions are living longer and, therefore, the transition from children's to adult care should be carefully considered by commissioners in planning end-of-life care services.

Lizzie Chambers, Chief Executive of the Association for Children's Palliative Care (ACT), said:

"Today's welcome announcement complements the children's palliative care strategy announced in February. Yet although PCTs now know what new money they are getting to improve adult services, they are still in the dark about the extra funding they have been given for children. There seems to be one rule for adults and another for children. We hope the forthcoming Child Health Strategy will clear this funding fog."

Barbara Gelb, Chief Executive of Children's Hospices UK, commented:

"When the government announced the children's palliative care strategy in February, it said it was giving Primary Care Trusts substantial new funding to implement this, alongside an emergency £20m for children's hospices. However, its reluctance to tell PCTs how much extra this actually represents is obstructing much-needed improvements in local children's palliative care services."

Lizzie Chambers added:

"It is good news that commissioners are now expected to plan for the transition from children's to adult services, which could help the many young people with life-limiting conditions who are now living to adulthood. However, the strategy emphasises the needs of older adults and there is a real danger that young adults who are approaching their end of life may be marginalised or forgotten. We will be pressing PCTs to use the new funding to put in place the services and support that young adults need."

Funding fog

1. Health Secretary Alan Johnson today launched the government's End-of-Life Care Strategy for adults in England, backed with £286 million to provide high quality care for all adults approaching the end of their life. The aim is to help more adults to die in the setting they choose.

2. A separate strategy for children's palliative care in England, "Better Care: Better Lives", was published by the Department of Health on 19 February 2007. This built on an Independent Review of Children's Palliative Care Services published in May 2007. An estimated 20,000 life-limited children, plus their families, require palliative care services each year.

3. Primary Care Trusts (PCTs) have been told they are getting significant new funding to implement the children's strategy. However, unlike the adult strategy, the actual sums involved have not been spelt out and charities are worried this is reducing the strategy's impact.

4. On 19 February, children's hospice services in England also received £20m in emergency funding to 2011, building on the three-year emergency funding of £27m they received in May 2006.

Transition to adult services

5. It is very welcome that today's strategy states: "Due to advances in medical care, many children and young people suffering from life-limiting conditions likely to require palliative care are nowadays living longer, and many of them can maintain a good quality of life if they and their families are properly supported by services. However, they do require increasingly complex levels of support and it therefore becomes much more important that transitions to adult care are carefully considered by commissioners in planning end of life care services." (para 1.23)

6. Advancements in the understanding and treatment of children with life-limiting conditions means that more young people are living longer, and there is a growing need for more dedicated and specialist services to support them. For example life expectancy for Cystic Fibrosis has doubled in the last 20 years, and life expectancy for Duchenne Muscular Dystrophy has increased from 14.4 years in the 1960s to over 25 years.

7. There are very still few services available to support life-limited children as they become young adults, and planning for transition is poor. What's more, adult services typically do not have the specialist knowledge of conditions that have traditionally been dealt with by paediatric consultants, and many don't have the tools, staff skills or resources to support transition.

Charities

8. The Association for Children's Palliative Care (ACT) is the national charity working to achieve the best quality of life and care for children and young people with life-threatening or life-limiting conditions and their families.

9. Children's Hospices UK is the national charity that gives voice and support to all children's hospice services. Our vision is for every child who is not expected to reach adulthood - and their family - to have awareness of, and access to, the highest standards of care and support in the location of their choosing.

Children's Hospices UK
www.childhospice.org.uk