Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what recent steps her Department has taken to improve (a) services for children who require end of life care, (b) services for children with life threatening conditions and (c) services for children with life limiting conditions.

Integrated care boards (ICBs) are responsible for determining the level of National Health Service funded palliative and end of life care for children locally, and they are responsible for ensuring that the services they commission meet the needs of their local population.

At a national level, in line with the NHS Long Term Plan, NHS England has provided approximately £12 million of match-funding to participating ICBs, and formerly CCGs, between 2020/21 and 2023/24. This was committed to invest in children and young people’s palliative and end of life care, giving a total investment of £24 million. In addition, NHS England supports palliative and end of life care for children and young people through the Children and Young People’s Hospice Grant. NHS England has confirmed that it will be renewing the funding for 2024/25, once again allocating £25 million of funding for children’s hospices using the same prevalence-based allocation approach as in 2022/23 and 2023/24. This prevalence-based approach ensures funding matches local need.

The Department is in ongoing discussions with NHS England to explore improving oversight and accountability of all-age NHS palliative and end of life care commissioning. Additionally, The Department, through the National Institute for Health and Care Research, is investing £3 million in a new Palliative and End of Life Care Policy Research Unit. This will help build the evidence base on all-age palliative and end of life care to inform policy making in this vital area.

NHS England’s palliative and end of life care team has recently engaged with 24 ICBs to understand how to better support commissioners, and has also reviewed all 42 ICB Joint Forward Plans for their inclusion of palliative and end of life care.

From April 2024, NHS England will include palliative and end of life care in the list of topics for regular performance discussions between national and regional leads. Additionally, NHS England has commissioned the development of a palliative and end of life care dashboard, which brings together all relevant data in one place. The dashboard helps commissioners understand the palliative and end of life care needs of their local population, including children, enabling ICBs to put plans in place to address and track the improvement of health inequalities.