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Seriously ill children must benefit from NHS funding boost

News and comment

We have welcomed today’s speech by the Prime Minister (18 June 2018) in which she announced a 10-year funding plan and an average increase to NHS England’s budget of 3.4% in each of the next five years. We now ask the Prime Minister to make sure that the NHS and local authorities fairly fund vital palliative care services for vulnerable babies, children and young people with life-limiting and life-threatening conditions.

We are calling on the government to work with us to develop a funded, cross-departmental children’s palliative care strategy for England – and increase the value of the crucial Children’s Hospice Grant to £25million per year. We ask that the plan makes sure that services have access to sustainable funding – and a workforce which can meet the complex needs of children with life-limiting conditions.

James Cooper, Public Affairs and Policy Manager at Together for Short Lives said:

“I welcome today’s boost in funding, which must, in part, go towards securing the lifeline children’s palliative care services that families of seriously ill children rely on. As the number of children living with life-limiting conditions increases and the demand for palliative care rises, NHS funding has simply not kept pace. The Prime Minister must increase the NHS Children’s Hospice Grant to £25million – and make sure other services provided by the statutory and voluntary sectors are sustainably funded. The new workforce plan must ensure enough professionals with the skills and knowledge needed to care for children with life-limiting conditions. Children’s social care, which is also crucial to families, is not covered by today’s announcement; I call on the government to commit more funding to local authorities for disabled children’s services.”

“Too many families of children with life-limiting conditions, grappling with the demands of providing 24/7 care, 365 days a year, with too little sleep or support, are simply not managing. Meanwhile, the services they rely on suffer real-terms funding cuts and struggle to make ends meet. I ask the Prime Minister to fund, not fail, seriously ill children.”

Investing in children’s palliative care means that children and families can access vital services which help manage pain and distressing symptoms and offer short breaks for respite desperately needed by families providing round the clock care. It has also been recognised by the National Institute of Health and Care Excellence (NICE) as a cost-effective use of NHS resources. In 2016, NICE calculated that by investing £12.7 million in implementing its guideline on end of life care for infants, children and young people, non-cash savings worth £34.7million would be released back into the NHS in England.

You can find out more about our call for a more equitable and sustainable approach to statutory funding for children’s palliative care in England here.


  • The Children’ Hospice Grant, which is allocated to all children’s hospices by NHS England, is currently worth a total of £11million per year. This has grown incrementally from £8.8million in 2006/07, when the grant was introduced as a £27million award over three years.
  • While the increase in the 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 across England. By 2015/16, when it had risen to £11million, it contributed an average of just 8%.
  • Increasing the value of the grant to £25 million per year would represent a 14% contribution to the current cost of the clinical care provided by children’s hospices, which is equal to the contribution originally made by the Department of Health when the grant was first awarded in 2006/07. The uplift would also recognise any additional costs in developing reporting mechanisms and new services to meet growing demand.
  • It is vital that the grant is maintained and increased to mitigate the inequitable and unsustainable way in which NHS clinical commissioning groups (CCGs) and local authorities fund children’s hospices across England. On average, the overall amount of statutory funding for charities providing children’s palliative care has continued on a downward trajectory, falling year on year (22% in 2015/16 compared to 23% in 2014/15 and 27% in 2013/14). This average figure masks significant variation in the amount of funding which CCGs allocate to their local children’s hospices.

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