Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if she will make an assessment of the implications for her policies of the report by Together for Short Lives entitled The deep disparity in NHS funding for children who need hospice care, published on 13 December 2023.

The Government recognises that access to high-quality, palliative and end of life care can make all the difference to individuals and their loved ones. The commissioning of children and young people’s palliative and end of life care services is the statutory duty of integrated care boards (ICBs). ICBs must commission palliative and end of life care services in response to the needs of their population, provided by a range of local organisations with the experience and skills to meet those needs.

Whilst the majority of palliative and end of life care is provided by National Health Service staff and services, we recognise the vital part that voluntary sector organisations, including hospices, also play in providing support to people at end of life and their families. Most hospices are charitable, independent organisations which receive some statutory funding for providing NHS services. The amount of funding hospices receive is dependent on many factors, including what other statutory services are available within the ICB footprint. Charitable hospices are autonomous organisations that provide a range of services which go beyond that which statutory services are legally required to provide. Consequently, the funding arrangements reflect this.

Due to the way the hospice movement organically grew, hospice locations were largely not planned with geographic or demographic purposes as a driving force. Therefore, there are inequalities with access to hospice services, especially for those living in rural or socio-economically deprived areas. It is therefore vital that hospices and statutory services work together to provide ensure their populations have access to palliative and end of life care when they need it.

At a national level, in line with the NHS Long Term Plan commitment, NHS England (NHSE) has provided circa £12 million match-funding to participating ICBs (and formerly clinical commissioning groups) between 2020/21 and 2023/24 which committed to invest in children and young people’s palliative and end of life care, including children and young people’s hospices, giving a total investment of £24 million. In addition, NHSE supports palliative and end of life care for children and young people through the Children and Young People’s Hospice Grant. NHSE has confirmed that it will be renewing the grant for 2024/25, once again allocating £25 million grant 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.

NHSE’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, with 69% of those plans making a specific mention. Further analysis is ongoing, but the intention is to use this information to help shape and focus support to ICBs.

Palliative and end of life care has been added to the agenda for Regional Quality and Performance meetings. Additionally, NHSE has commissioned the development of a palliative and end of life care dashboard, which brings together all relevant local data in one place. The dashboard helps commissioners understand the palliative and end of life care needs of those their local population, including the ability to filter the available information, such as by deprivation or ethnicity, thereby, enabling ICBs to put plans in place to address and track the improvement of health inequalities.