At a glance: the public policies affecting children in the UK who need palliative care

We have compiled a list of all of the public policies published by the UK Government, devolved governments and other statutory bodies that have an impact on children with life-limiting conditions, their families and the services and professionals who care for them. We have written them as references to make it easier for you to cite them should you plan to use them in research, reports or other resources.

Updated on 31 October 2022.

England, Northern Ireland and Wales

• The National Institute for Health and Care Excellence. 2016. Transition from children’s to adults’ services for young people using health or social care services – NICE guideline [NG43]. Available to download from: https://www.nice.org.uk/guidance/ng43
• The National Institute for Health and Care Excellence. 2016. Transition from children’s to adults’ services – Quality standard [QS140]. Available to download from: https://www.nice.org.uk/guidance/qs140
• The National Institute for Health and Care Excellence. 2016. End of life care for infants, children and young people with life-limiting conditions: planning and management – NICE guideline [NG61]. Available to download from: https://www.nice.org.uk/guidance/ng61
• The National Institute for Health and Care Excellence. 2017. End of life care for infants, children and young people – NICE quality standard [QS160]. Available to download from: https://www.nice.org.uk/guidance/qs160
• The National Institute for Health and Care Excellence. 2022. Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across health, social care and education. Available to download from: https://www.nice.org.uk/guidance/ng213

England

• Ambitions for Palliative and End of Life Care: A national framework for local action 2021-2026. 2021. Available to download from: https://www.england.nhs.uk/publication/ambitions-for-palliative-and-end-of-life-care-a-national-framework-for-local-action-2021-2026/
• Care Quality Commission. 2014. From the pond into the sea: children’s transition to adult health services. Available to download from: http://bit.ly/1uKT4Yf
• Children and Young People’s Health Outcomes Forum – Report of the Long-term Conditions, Disability and Palliative Care Subgroup. 2012. Available to download from: bit.ly/Zqlirl
• Department for Education. 2011. Short breaks for carers of disabled children: departmental advice for local authorities. Available to download from: http://bit.ly/1EmRyvM
• Department for Education. 2014. Special educational needs and disability code of practice: 0 to 25 years. Available to download from: http://bit.ly/1kOCi5i
• Department of Health. 2014. Care and support statutory guidance issued under the Care Act 2014. Available to download from: http://bit.ly/VrzH7i.
• Department of Health. 2014. Care Act 2014: statutory guidance for implementation. Available to download from: http://bit.ly/1tNCBng
• Department of Health and Social Care. 2022. Health Education England mandate: 2022 to 2023. Available to download from: https://www.gov.uk/government/publications/health-education-england-mandate-2022-to-2023
• Department of Health. 2016. Children and young people’s continuing care national framework. Available to download from: http://bit.ly/2doRfyy
• Department of Health. 2016. ‘Our Commitment to you for end of life care: The Government Response to the Review of Choice’. Available to download from: http://bit.ly/2oOUsfj
• Department of Health. 2017. One year on: the government response to the review of choice in end of life care. Available to download from http://bit.ly/2AOFadM
• Department of Health and Social Care. 2022. NHS mandate 2022 to 2023. Available to download from: https://www.gov.uk/government/publications/nhs-mandate-2022-to-2023
• Care Act 2014, c.23.: Available to download from: https://www.legislation.gov.uk/ukpga/2014/23/contents/enacted
• Children and Families Act 2014, c.6.: Available to download from: http://bit.ly/1rmlG7b
• Health and Care Act 2022, c.3.: Available to download from: https://www.legislation.gov.uk/ukpga/2022/31/contents/enacted
• NHS Employers. Pay scale material for 2022/23. Available to download from: https://www.nhsemployers.org/articles/pay-scale-material-202223
• Hughes-Hallett T, Craft A and Davies C. 2011. Palliative care funding review – creating a fair and transparent funding system; the final report of the palliative care funding review. Available to download from: bit.ly/XQBIE7
• NHS England. 2013. E03/S/h – 2013/14 NHS standard contract for paediatric medicine: palliative care particulars, schedule 2 – the services, A – service specifications. Available to download from: bit.ly/11yjtVS.
• NHS England. 2015. A bite sized guide to grants for the voluntary sector. Available to download from: http://bit.ly/1LY0hdk
• NHS England. 2017. Guidance for using the Children’s Palliative Care Currency. Available to download from: http://bit.ly/CPCcurrency
• NHS England. 2017. Developing a new approach to Palliative Care Funding- Final Report 2015/16 Testing. Available to download from: http://bit.ly/currtest1516
• NHS England and NHS Improvement. 2019. The NHS Long Term Plan. Available to download from: https://www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-plan-version-1.2.pdf
• Nursing and Midwifery Council. 2019. Standards for Pre-Registration Nursing Education. Available to download from: https://www.nmc.org.uk/standards/standards-for-nurses/standards-for-pre-registration-nursing-programmes/
• NHS England and NHS Improvement. 2022. Integrated Care Systems: Guidance. Available to download from: https://www.england.nhs.uk/publication/integrated-care-systems-guidance/
• NHS England and NHS Improvement. 2022. Universal Principles for Advance Care Planning (ACP). Available to download from: https://www.england.nhs.uk/publication/universal-principles-for-advance-care-planning/
• NHS England and NHS Improvement 2022. Palliative and End of Life Care Statutory Guidance for Integrated Care Boards (ICBs). Available to download from: https://www.england.nhs.uk/wp-content/uploads/2022/07/Palliative-and-End-of-Life-Care-Statutory-Guidance-for-Integrated-Care-Boards-ICBs-September-2022.pdf

Northern Ireland

• Department of Health. 2016. Providing High Quality Palliative Care for Our Children: A Strategy for Children’s Palliative and end-of-life care 2016-26. Available to download from: http://bit.ly/2gaJTww
• Department of Health. 2022. Health and Social Care Workforce Strategy 2026. Available to download from: https://www.health-ni.gov.uk/publications/health-and-social-care-workforce-strategy-2026

Scotland

• Scottish Government. 2012. CEL12: a partnership for better palliative and end of life care. Available to download from: http://bit.ly/1RT6jmd
• Scottish Government. 2012. A Framework for the Delivery of Palliative Care for Children and Young People in Scotland. Available to download from: http://bit.ly/1vBz8sw
• Scottish Government. 2015. Strategic Framework for Action for Palliative and End of Life Care. Available to download from: https://www.gov.scot/publications/strategic-framework-action-palliative-end-life-care/
• Scotland. Children and Young People (Scotland) Act 2014: Elizabeth II. 2014. Available to download from: http://www.legislation.gov.uk/asp/2014/8/contents/enacted
• Scotland. Carers (Scotland) Act 2016: Elizabeth II. 2016. Available to download from: http://www.legislation.gov.uk/asp/2016/9/contents/enacted

Wales

• A Scoping Survey of Bereavement Services in Wales. End of Study Report, December 2019. Available to download from: https://gov.wales/sites/default/files/publications/2019-12/scoping-survey-of-bereavement-services-in-wales-report.pdf
• Welsh Government. 2017. Palliative and end of life care delivery plan – March 2017. Available to download from: https://gov.wales/palliative-and-end-life-care-delivery-plan-2017
• Welsh Government. 2021. Strategy for unpaid carers. Available to download from: https://gov.wales/strategy-unpaid-carers-html
• Welsh Government. 2022. National framework for the delivery of bereavement care. Available to download from: https://gov.wales/national-framework-delivery-bereavement-care
• Welsh Government. 2022. Welsh hospices’ funding to increase. Available to download from: https://gov.wales/welsh-hospices-funding-increase
• Welsh Government 2022. Quality statement for palliative and end of life care for Wales. Available to download from: https://gov.wales/quality-statement-palliative-and-end-life-care-wales-html
• Sugar et al. 2008. Palliative Care Planning Group Wales: Report to the Minister for Health and Social Services. Available to download from: http://bit.ly/1RzYUaP