Palliative care charities on the brink of state funding crisis

Nov 22, 2016
  • Cuts and freezes in statutory funding for children’s hospice and palliative care charities means a bleak outlook for seriously ill children and families in England.
  • Local authority funding for children’s palliative care charities has fallen dramatically, down by 61% over the last year - only contributing one per cent of the money needed.
  • Statutory funding of adult hospices is frozen and distribution varies widely.

Statutory funding for children’s hospices and palliative care charities in England is falling, according to findings released today by national charities, Together for Short Lives and Hospice UK. Local authority funding has been cut dramatically, with an average reduction of 61% as reported by children’s palliative care charities. And the picture for adult palliative care is also worrying: nearly two thirds of hospices for adults (65 per cent) have had their statutory funding frozen or cut in the last financial year (46 per cent frozen, 19 per cent cut).

Services for seriously ill children under threat

Children’s palliative care charity funding is facing a crisis. There are 40,000 children and young people with life-shortening conditions in England and the number is growing. The cost of caring for an increased number of children with complex health conditions is rising, but government funding is failing to keep pace – in fact, it is declining.

The survey of statutory funding for children’s hospice and palliative care charities in England (looking at local authority, Clinical Commissioning Groups and NHS England funding) reveals a desperately bleak outlook:

  • Cuts mean that local authorities are now only contributing one per cent of the money charities need to provide palliative care to seriously ill children. This is despite the duty that councils have to provide short breaks (respite) to all disabled children and young people. On average, the overall amount of statutory funding for charities providing children’s palliative care continues on a downward trajectory, falling year on year (22% in 2015/16 compared to 23% in 2014/15 and 27% in 2013/14).
  • Rising care costs are not matched by statutory funding. The cost of delivering lifeline care and support to seriously ill children in 2015/16 was nearly 10% greater than it was in 2014/15.
  • There is heavy reliance on the Children’s Hospice Grant: Nearly 60% of children’s hospice services say they would be forced to reduce their services if the NHS England children’s hospice grant was no longer available. And over two thirds would be most likely to cut short breaks - leaving families, without respite care, at breaking point. NHS England is consulting on this grant and evidence from this report suggests it needs to be greatly increased.
  • Charities delivering palliative care are worried that unless funding arrangements change they will not be able to meet the needs of these children and may have to cut existing services. This compounds the existing inequitable funding for children’s palliative care across the country.

UK children’s palliative care charity Together for Short Lives says it is not too late to prevent a crisis in children’s hospice and palliative care funding.

Barbara Gelb OBE, CEO of Together for Short Lives, says:

“We urge the government to listen to children and their families and end this crisis in children’s palliative care funding. The needs of this relatively small but nevertheless significant and growing number of children, with the weakest voice, are often not heard or ignored. Inadequate funding of children’s palliative care services – across health and social care – means we are collectively failing the most vulnerable children in society, choosing to turn away from families who need help the most.

“We believe that ministers should follow the example of the Scottish Government, which has recently committed £30 million funding to Children’s Hospice Association Scotland (CHAS) over the next five years. We’re calling on the UK government to re-examine funding arrangements as a matter of urgency and carry out a national inquiry into the state of children’s palliative care funding in England.

“We need to work together and act today to avert a painful crisis tomorrow. The Chancellor’s Autumn Statement provides that opportunity. It’s time to fund - not fail - services for seriously ill children and their families.”

For adults at end of life this means

Nearly two thirds of hospices for adults (65 per cent) have had their statutory funding frozen or cut in the last financial year (46 per cent frozen, 19 per cent cut). The lack of a coherent commissioning model nationally means the statutory funding of hospice care is effectively randomly distributed across England and is often not based on people’s actual care needs at the end of life.

Tracey Bleakley, CEO of Hospice UK says the Government needed to pay attention to these early warning signs to avoid a commissioning crisis in adult palliative care:

“The current statutory funding situation for adult hospices is very concerning and poses a significant threat to the long-term sustainability of the sector.

“Hospices are having to deliver more year after year with standstill NHS resources, putting more pressure on community fundraising to help bridge the gap. This all comes when an ageing population is putting unprecedented demand on hospice care services

“There needs to be more investment and also fairer funding from the government for hospice care now - to supplement the vital support provided by local communities and prevent hospices reaching crisis point.”

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Notes to Editor

Together for Short Lives and Hospice UK’s survey findings on children’s hospice and palliative care funding and commissioning in England 2015/16.

1. UK children’s charity, Together for Short Lives, together with Hospice UK, have asked charities providing hospice and palliative care in England to tell us how much statutory money they receive. 

Read our findings and recommendations in our report.

For voluntary sector providers of children’s palliative care services (referred to in the report as ‘charities’), our survey looked at three main types of funding including:

a. The NHS England children’s hospice grant.

b. Funding from NHS clinical commissioning groups (CCGs)

c. Funding from local authorities.

2. Our survey was based on the statutory funding they received in 2015/16.

3. We have carried out the same survey with these charities for eight years so we can understand funding trends and their impact on services for children with life-limiting or life-threatening conditions. We asked those charities which provide health or social care to children and young people.

4. Twenty-seven charities responded to our survey. Of these, 26 provide healthcare to children and young people with life-limiting or life-threatening conditions and could reasonably expect to be commissioned and funded by CCGs. All 27 of the charities provide social care to this group of children and young people and could reasonably expect to be commissioned and funded by local authorities.

5. Together for Short Lives has 36 charity members, including children’s hospice charities, which provide healthcare to children and young people in England with life-limiting and life-threatening conditions. The response rate to this survey from healthcare-providing children’s palliative care charities is therefore 72%.

6. Together for Short Lives has 37 charity members which are regulated by the Care Quality Commission and provide social care to children and young people in England with life-limiting or life-threatening conditions. The response rate to this survey from social care-providing children’s palliative care charities is therefore 73%.

Together for Short Lives has launched a set of infographics to communicate the main points of the survey and funding cuts to children’s palliative care charities in England. Assets available to journalists – please email the press office: jo.barrell@togetherforshortlives.org.uk.

About Together for Short Lives

  • Hearing the news that your child has a life-shortening condition and is likely to die young is completely devastating. For tens of thousands of families in the UK this is the reality. These children have very complex and unpredictable conditions and often need round the clock care, seven days a week.
  • Together for Short Lives is a UK wide charity that, together with our members, speaks out for all children and young people who are expected to have short lives. We are here to help children and their families to access specialist children’s palliative care services when and where they need it. We provide information so families know where to go for support and have the help they need to make the right choices about their child’s care. Together for Short Lives supports all the professionals, children’s palliative care services and children’s hospices that deliver lifeline care to children and families across the UK.
  • Together with everyone who provides care and support to these children and families, we are here to help them have as fulfilling lives as possible and the very best care at the end of life. We can’t change the diagnosis, but we can help children and families make the most of their time together.
  • Visit www.togetherforshortlives.org.uk for more information.
  • Follow Together for Short Lives on Twitter @Tog4ShortLives.
  • Like Together for Short Lives on Facebook at togetherforshortlives.

About Hospice UK

  • Hospice UK is the national charity for hospice care and the only membership body for organisations providing hospice care. We support and champion the work of more than 200 of these organisations across the UK.
  • Hospices, and other organisations which provide hospice care, offer vital care for people with terminal or life-limiting conditions and also support their families and carers.
  • For further information about hospice care follow us on Twitter @hospiceukPA.
  • Get all the latest news from the hospice and palliative care sector, as well as patient stories, on ehospice UK at: www.ehospice.com/uk This service is managed by Hospice UK. You can also follow ehospice news on Twitter at @ehospicenews

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