Funding children’s palliative care

Together for Short Lives wants to see a fair and transparent funding system which delivers for children and families - and secures sustainable and consistent funding for those providing palliative care, including children’s hospices.

Currently, statutory funding for children's palliative care is patchy and inconsistent. In 2015, a survey carried out by Together for Short Lives and Hospice UK found that statutory funding for children's and adult hospices was fragile, unfair and unsustainable. The relatively small population of children with life-limiting conditions acts as a barrier for commissioners to ensure that holistic children's palliative care is commissioned effectively in local areas. In England, a more integrated commissioning approach is needed from CCGs, NHS England and local authorities.

For children’s hospice services, the annual NHS England grant of £11 million provides a vital lifeline. The coalition government committed to continuing the grant in the 2010 coalition agreement. It also committed to introducing a new per-patient funding system for hospices and other providers of palliative care so that support can be provided to children and adults in the setting of their choice.

To help bring this about, the government commissioned an independent palliative care funding review. This published its its final report in June 2011 and recommended that a new tariff should be developed to fund palliative care, based on health needs and regardless of where the care is given. A series of pilots were set up to collect data so that the tariff could be developed.

Together for Short Lives worked with NHS England to help it collect this data, which has been used to develop a new funding approach in the form of a NHS 'currency' for both children’s and adult’s palliative care. The approach identifies the cost of providing children’s palliative care as depending on the place in which it is provided, the phase of the child’s illness, their age and (in community settings) how severe their needs are. CCGs have been able to use the new approach from April 2015. However, they are not be obliged to use it. NHS England has invited commissioners and providers to test the new approach during 2015/16.

Together for Short Lives supports the principle of a per-patient funding system for children’s palliative care to provide more sustainable and transparent funding - and NHS England’s work to develop it. NHS England’s new approach is a helpful step forward towards achieving this. We believe that:

  • the government and NHS England should take action to make sure that the three separate sources of statutory funding for children’s palliative care correlate with each other; these are specialised children’s palliative care commissioning (from NHS England); general children’s palliative care commissioning (from clinical commissioning groups, CCGs, through the new approach); and social care (from local authorities)
  • the government and NHS England should provide guidance and allocate funding to make sure that those elements of children’s palliative care outside of the scope of NHS England’s new approach are funded by CCGs and local authorities; specifically, these include short break care not included in the currency and bereavement care. The 2011 Palliative Care Funding Review recommended that the state should play a role in funding these services; the government and NHS England should now prioritise important policy decisions about how children’s palliative care is funded
  • however, there are a number of barriers to the success of the new approach - including the potential costs to voluntary sector providers of implementing systems needed to gather data which they are not already collecting; the children’s palliative care sector will need significant support to overcome these barriers
  • the government and NHS England should maintain the children’s hospice grant until the new approach is leading to local commissioning which is funding children’s palliative care fairly and sustainably.

In March 2015, the House of Commons Health Select Committee published a report of its inquiry into palliative and end of life. It used the opportunity to call on the government to ensure that future funding proposals fully recognise the importance of the voluntary sector - and specifically set out how it intends to ensure sustainable, long term funding for the hospice sector.

To help bring about fairer and more sustainable funding for children's palliative care in England, Together for Short Lives is:

  • working to ensure that the the children's palliative care sector is involved in testing and further developing the new system
  • working to ensure that any new system is fully tested so that it delivers real benefit to children’s palliative care
  • lobbying to maintain sustainable funding during the transition to the new system - which we believe should include the £11 million NHS England grant for children’s hospices, so that it continues to meet any shortfall.