Together for Short Lives
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A more equitable and sustainable approach to statutory funding in England

Families of children with life-limiting conditions rely on the palliative care provided by the voluntary sector, including children’s hospices. Despite their amazing work – and the pressure they take off the NHS – these lifeline services do not receive enough money from the state. The funding they do receive is patchy and unsustainable. We are calling on local NHS organisations and local authorities to fund children’s palliative care – and on the government and NHS England and NHS Improvement (NHSEI) to make clear to them that they are responsible for doing so.

Read our report, Statutory Funding for Children’s Hospice and Palliative Care Charities in England 2018/19, here.

Together for Short Lives estimates that the cost of providing palliative care to children and young people amounts to hundreds of millions of pounds a year across the UK. The majority of children’s palliative care is funded by organisations spanning the voluntary sector, the NHS and local government.

While the state funds the vast majority of the children’s palliative care directly provided by the NHS, we believe it is right that it also contributes to the costs incurred by voluntary providers, including children’s hospices. The children’s palliative care provided by these organisations helps ease pressure on the NHS. Children’s hospices, for example, make a crucial contribution to local health economies. In total, children’s hospice charities in England provided active clinical support to an estimated 8,160 babies, children and young people in 2018/19. This is based on a mean of 240 children per children’s hospice charity. This includes an estimated:

  • 5,643 who received respite or short breaks (based on an average of 166 children per children’s hospice charity)
  • 2,775 who received support to manage their symptoms (based on an average of 82 per children’s hospice charity)
  • 3,944 who received children’s hospice care at home (based on an average of 116 per children’s hospice charity)
  • 518 who received end of life care (based on an average of 15 per children’s hospice charity)
  • 2,949 who received bereavement care (emotional and/or psychological support, based on an average of 87 per children’s hospice charity)

Without children’s hospices, the clinical aspects of this care would otherwise have to be provided and paid for in its entirety by the NHS.

Voluntary sector providers bring social value to communities. When local NHS organisations remunerate these charities for the children’s palliative care they provide, the funding is matched and exceeded by charitable donations which also contribute to running services. Local volunteers also help to provide children’s palliative care which are part-funded from statutory sources, further adding value.

There is overwhelming public support to make sure that children with short lives are not shortchanged by the state: 78% of the public think that children’s hospices receive too little funding from statutory sources. The public think that children’s hospices receive 38% of their funding from statutory sources, when in reality they only receive 21%. The public also think that children’s hospices should receive more statutory funding (74%, of their total funding).

In addition to these challenges, NHS-provided children’s palliative care services are being funded neither equitably nor sustainably, from CCGs or directly from the NHS England specialised commissioning team. The Disabled Children’s Partnership has identified an annual £434 million deficit in the funding that local authorities in England need to meet the demand for social care for disabled children, including short breaks for respite for seriously ill children.

The National Institute of Health and Care Excellence (NICE) published a resource impact template alongside the guideline on end of life care for infants, children and young people. This tool allows local areas to input their population data and it calculates the overall cost and savings of implementing the new guidelines. Using the total population of children in England, NICE calculate that by investing £12.7million in implementing the guidance, non-cash savings worth £34.7million would be released back into the NHS in England.

What do we know about the way in which the state funds children’s palliative care?

The costs of providing children’s hospice care is increasing faster than the rate of inflation. But, worryingly, state funding for charities delivering vital children’s palliative care in England is patchy and declining year on year.

Together for Short Lives has found that:

  • In the two years between 2016/17 and 2018/19, the funding each children’s hospice charity received from local NHS clinical commissioning groups (CCGs) reduced on average by more than £7,000 – a 2% cut from £371,303 to £364,076.
  • In the last year, between 2017/18 and 2018/19, nearly three quarters (74%) of children’s hospice charities experienced a real-terms cut (a cut, freeze or increase below 1.8%) in the money they received from CCGs. Over half (56%) of children’s hospice charities experienced cuts or freezes in CCG funding in cash terms.
  • Funding is also very patchy and varies widely across local areas: 15% of children’s hospice charities receive nothing at all from their CCGs.
  • The money that each children’s hospice has to spend each year to meet the needs of seriously ill children and their families has grown to an average of £3,681,442 – a 4.5% increase between 2016/17 and 2018/19, faster than the rate of inflation.

This combination of falling CCG funding and increasing costs is hitting our most vulnerable children and their families: a fifth (19%) of children’s hospice charities are cutting vital short breaks for respite.

On average, adult hospices in England receive 33% of their funding from statutory sources. The Scottish Government recently committed £30million over five years to Children’s Hospice Association Scotland; this amounts to approximately 50% of their charitable costs.

The Children’s Hospice Grant

Between November 2016 and January 2017, Together for Short Lives consulted children’s hospice charities in England on a potential new future formula for allocating the Children’s Hospice Grant. This is allocated annually to all children’s hospices in England. The total grant amount has increased incrementally from £8,829,180 in 2006/07 (part of £27 million awarded over three years) to £12,000,000 in 2019/20. We consulted all current recipients of the grant on behalf of NHS England, which is responsible for administering the grant.

From the evidence we gave gathered, the total amount of funding available through the Children’s Hospice Grant is valued greatly but is also inadequate. While this increase in the Children’s Hospice Grant has been welcome, it has not kept pace with the growing cost of providing clinical palliative care incurred by children’s hospice charities. In 2006/07, the grant contributed an average of 14% towards the cost of providing clinical care in children’s hospices. In 2018/19, when it had risen to £11,000,000, it contributed an average of just 9%.

What is the UK Government and NHS England doing to improve the way in which children’s palliative care is funded by the state?

In addition to providing the Children’s Hospice Grant, NHS England has developed and published a children’s palliative care funding currency. In simple terms, this a formula which describes for local planners and funders of healthcare (known as clinical commissioning groups, or CCGs) how the cost of providing children’s palliative care varies depending on a number of factors. The currency provides official recognition that the NHS has a role in funding children’s palliative care in England, and could help CCGs to better understand their responsibilities for supporting these vital services. The guide also usefully sets out:

  • details of the currency formula model and how it helps commissioners to pay for local children’s palliative care services
  • the data needed to use the currency formulas
  • an Excel template to help collect data
  • tools to support providers to collect and validate data
  • advice on sharing information with commissioners.

The guide also recommends that while bereavement counselling does not form part of the currency model, commissioners should think about the excellent value that these services provide when they commission services.

Further to the currency, NHS England chief executive Simon Stevens announced on 27 December 2018 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.

In a House of Commons debate on 1 July, Care Minister Caroline Dinenage announced that NHS England was going to:

  • increase the Children’s Hospice Grant to £25 million by 2023/24 and ringfence this money specifically be for children’s hospices
  • continue with its plans to match fund local NHS organisations that increase the amount of money they spend on children’s palliative care services in hospitals, children’s hospitals and in the community
  • review what resources are necessary across the system to ensure all children can access children’s palliative care regardless of where they live.

The planned Children’s Hospice Grant amounts in future years will be:

  • 2020/21: £15 million.
  • 2021/22: £17 million.
  • 2022/23: £21 million.
  • 2023/24: £25 million.

What would Together for Short Lives like to happen?

  1. The government to invest at least £200 million per year in making sure seriously ill children and families can access the palliative care they need out of hours and at weekends.
  2. NHSEI to reallocate the Children’s Hospice Grant equitably to children’s hospices.
  3. NHSEI to make sure all of the £7 million funding for children’s palliative care committed in the NHS Long Term Plan will be matched by NHS clinical commissioning groups and fully allocated by 2023/24.
  4. NHEI to make sure children with the most complex life-limiting conditions receive specialised children’s palliative care provided by the NHS and children’s hospices which is funded equitably, sustainably and directly by NHS England.
  5. The government to meet the annual £434 million gap in local authority funding for social care for disabled children in England, including for short breaks for respite for seriously ill children.
  6. The government and NHSEI to develop a long-term, fully funded approach to planning, funding and providing palliative care to children in England in hospitals, homes and hospices; as a result, local NHS and council funding for children’s hospice and palliative care charities should increase.
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