Together for Short Lives
Call the Helpline 0808 8088 100

A more 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 (NHSE/I) to make clear to them that they are responsible for doing so.

Funding is one of the most significant barriers to 24/7 children’s palliative care being provided at home in every part of England. Based on the specialist and core professionals that NICE state should comprise children’s palliative care multidisciplinary teams – and the population that needs access to them – we estimate that the NHS should spend approximately £385million every year to meet this standard .

There have been positive developments in NHS funding for children’s palliative care services in recent years. In July 2019, NHSE/I decided to increase the Children’s Hospice Grant to £25million by 2023/24 and ringfence this money specifically for children’s hospices. Through the hospice at home services they provide, often in collaboration with NHS community teams, children’s hospices can play an important role in making sure 24/7 palliative care is available to children who need it. The planned Children’s Hospice Grant amounts during this period are:

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

In addition, the NHS Long Term Plan commits NHSE/I to match up to £7million of CCG funding for children’s palliative care, including children’s hospice services, by 2023/24. The money is available to NHS and voluntary sector providers and is already being used to fund some new and existing specialist children’s palliative care services. The funding amounts during this period are:

  • 2020/21: £2million
  • 2021/22: £3million
  • 2022/23: £5million
  • 2023/24: £7million.

In 2022/23, NHSE/I is funding a dedicated children and young people’s palliative care lead in each of the seven palliative and end of life care strategic clinical network (SCN) regions in England.

In April 2020, the government’s Emergency Coronavirus Fund for charities included a commitment of £200million for hospices, including children’s hospices. In November 2020, the government announced that it would provide an additional £205million of support for the NHS for the winter 2020/21. This included up to £125million to secure additional hospice capacity and up to £148million for the period December 2021-March 2022 to secure and increase NHS capacity to enable hospital discharge.

Despite this progress – and the money which we estimate that the NHS is also spending on funding specialist paediatric palliative medicine consultants, community children’s nurses and (through individual CCGs) children’s hospices – we still approximate that the NHS will be spending only £84million every year on children’s palliative care by 2023/24 . We therefore estimate that there will be a £301million gap in NHS spending on children’s palliative care in 2023/24.

Our mapping shows that, in some areas, standards are being met without commissioned service specifications being in place. This suggests that the costs of some children’s palliative care services – particularly some specialist services provided by NHS acute trusts – are being absorbed by the NHS trusts themselves or funded from charitable sources without being fully reimbursed by CCGs.

It is not right that in some areas, the sustainability of core and specialist care for seriously ill children and their families depends on the generosity of individual donors, sales made in charity shops and the success of fundraising events. ICBs should have access to the financial resources to meet their legal duty to commission palliative care for children and young people.

We are also concerned that NHSE/I has only committed to the Children’s Hospice Grant until the end of 2023/24. The grant remains vital to the sustainability of children’s hospices. It underpins their ability to work with their statutory sector partners to ensure that seriously ill children can exercise choice over how and where they receive palliative care.

As the government increases NHS funding by a total of £10.8billion in the period to 2024/25 , we believe the NHS should fund the lifeline 24/7 palliative care they need regardless of whether it is provided in hospitals, at home and in children’s hospices:

  • We call on the government to ensure that the NHS invests an additional £301million in children’s palliative in England every year to meet the gap.
  • We call on the government to ensure that NHSE/I maintains existing children’s palliative care funding streams for the long term as a priority, beyond 2023/24, including match funding and the Children’s Hospice Grant.
  • We call on NHSE/I to model for each ICB how much it should be spending on children’s palliative care – and then hold them to account for the extent to which they spend money for this purpose.

Take part in our campaign now to call on the Prime Minister to take this action urgently.

· We recommend the following action to make sure that children’s hospice care is in England is sustainable for the long-term – and funded on a more equitable basis:

Children’s hospice funding in England

Our 2022 survey shows a wide variation in local NHS funding for children’s hospices in England. Lifeline hospice care for seriously ill children and young people could be put at risk if NHS England do not commit to providing the Children’s Hospice Grant as a central grant beyond 2023/24.

Important progress has been made in NHS funding for children’s hospices in recent years. The government and then NHS England have provided a central grant to children’s hospices since 2007, which in 2021/22 was worth a total of £17million. On average, it represented around one pound in every six of spent by children’s hospices on the care and support they provide (15%).

The grant is a vital funding source amid a patchy funding for children’s hospices from local NHS organisations (clinical commissioning groups, or CCGs) and local authorities. While average funding from CCGs represented one pound in every five spent by children’s hospices in 2021/22 on the care and support they provided (an average of £689,000 for each children’s hospice from CCGs, an increase of 38% compared to 2020/21), the amounts received by individual children’s hospices varied greatly: half of children’s hospices (50%) saw their CCG funding decrease between 2020/21 and 2021/22. Nearly one in ten (9%) children’s hospices received over half of their charitable expenditure from CCGs, while one in five (22%) received five per cent or less of their charitable expenditure from CCGs.

Across the range of types of care and support, a majority of children’s hospices are either expanding or maintaining them at current levels. However, it is concerning that over a quarter (27%) of children’s hospice are cutting short breaks for respite as a result of funding changes between 2020/21 and 2021/22. As set out in paragraph 30, despite average increases in overall income, the high rate of vacant care professional posts is restricting many children’s hospices’ ability to expand their services for seriously ill children and young people.

On average, children’s hospices’ active caseloads have increased by 11% from 262 in 2020/21 to 292 in 2022/23. This is 6% greater on average than the 276 reported in 2019/20. Children’s hospices report greater levels of activity across most of the types of care and support they provide. On average, children’s hospices provided end of life care to 54% more children (20 per children’s hospice, compared to 13 in 2020/21 and 11 in 2019/20), symptom management to 50% more children (37 per children’s hospice compared to 25 in 2020/21 and 18 in 2019/20) and short breaks for respite to 27% more children (123 per children’s hospice compared to 97 in 2020/21).

However, overall, some types of activity are still at levels lower than before the pandemic, including short breaks for respite (17% down in 2021/22, compared to the average of 148 children per children’s hospice who received them in 2019/20) and hospice at home (31% down in 2021/22, compared to the average of 102 children per children’s hospice who received this care in 2019/20).

Together for Short Lives welcomes the planned increase in the NHS England (NHSE) grant to £21million in 2022/23 and then £25million in 2023/24. While the rise is very welcome, officials are refusing to commit to protecting and extending the grant as funding stream distributed centrally by NHS England after 2023/24. Children’s hospices are already warning that if they were unable to access the grant in 2024/25 and beyond, they would be forced to cut vital care and support for children and families:

  • nearly one in five (18%) would cut end of life care
  • over a quarter (27%) would cut symptom management services
  • nearly two thirds (64%) would cut short breaks for respite.

Children’s hospices provide vital care and support to seriously ill children and their families. They offer lifeline physical, emotional and spiritual support and help children and families to make meaningful choices about care in hospices and at home. In doing so, they take pressure away from overstretched hospital services.

Children’s hospices need sustainable funding from the NHS, local authorities and charitable sources to meet the needs of a growing population of seriously ill children and young people who have an increasingly complex range of needs. Together for Short Lives welcomes the progress that the government and NHS England have made on children’s hospice funding in recent years. The increase in the Children’s Hospice Grant, coupled with the NHS Long Term Plan match funding for children’s palliative care, mean that, on average, children’s hospices are accessing higher levels of statutory funding.

On average, children’s hospices expect their charitable expenditure to grow by over one fifth (22%) between 2021/22 and 2022/23. Children’s hospices in England have higher vacancy rates relative to the NHS: in March 2022, the average vacancy rate for non-medical care and support roles (including nurses) equivalent to Agenda for Change bands 2-9 for children’s hospices charities in England was over 18%. Like other employers, children’s hospices face growing costs as inflation soars and they compete to recruit and retain staff. They now rely on the larger Children’s Hospice Grant to help them meet their growing costs.

We recommend the following action to make sure that children’s hospice care is in England is sustainable for the long-term – and funded on a more equitable basis:

  1. Protect and extend the NHS England Children’s Hospice Grant: with patchy local NHS funding and the negative experience that some children’s hospices have reported in trying to access the NHS Long Term Plan match funding and £25million non-recurring funding in 2019/20, we call on ministers and officials to maintain the Children’s Hospice Grant as a ringfenced, centrally distributed funding stream from NHS England. This will make sure that NHS funding meant for children’s hospices reaches children’s hospices.
  2. Hold the new integrated care systems (ICSs) to account: the Secretary of State for Health and Social Care to use their new powers in the Health and Care Act 2022 to direct NHSE/I to make sure that all seriously ill children in England and their families should be able to choose to receive palliative care from children’s hospices, if it is in their best interests. This should build on the legal duty on integrated care boards (ICBs) in the Health and Care Act to commission palliative care as they consider appropriate for meeting the reasonable requirements of the people for whom they are responsible.
  3. Local and regional action: as ICSs operate on a statutory footing from July, integrated care partnerships (ICPs) should take our findings into account as they determine the health and healthcare needs of their population. Integrated care boards (ICBs) should commission children’s hospice and palliative care services in a way which meets the NICE standards. NHSE should regularly monitor the extent to which ICPs and ICBs do this through the new strategic clinical networks (SCNs) – and hold them to account if they fail to do so.
  4. Government funding for short breaks: HM Treasury should meet the annual £573 million funding gap in social care for disabled children in England identified by the Disabled Children’s Partnership; local authorities could use this funding to make sure that short breaks for respite for families of seriously ill children, including those provided by children’s hospices, are sustainable for the long-term.

If government, NHSE and ICSs fail to take this action, seriously ill children and families’ access to crucial hospice and palliative care services like end of life care and short breaks could be put at risk. Seriously ill children do not have time to wait for hospices to receive this reassurance.

You can find out how children’s hospices are funded by the state in Northern Ireland, Scotland and Wales from our other policy pages.

Policy and influencing