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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.

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

England

  • Ambitions for Palliative and End of Life Care. 2015. Available to download from: http://endoflifecareambitions.org.uk/
  • 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
  • Craft A and Killen S. 2007. Palliative care services for children and young people in England: an independent review for the Secretary of State for Health. Available to download from: bit.ly/YHZjsA.
  • 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. 2013. Annual report of the chief medical officer 2012: our children deserve better: prevention pays. Available to download from: http://bit.ly/1QrfGq9
  • 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. 2014. Delivering high quality, effective, compassionate care: developing the right people with the right skills and the right values: a mandate from the Government to Health Education England: April 2014 to March 2015. Available to download from: http://bit.ly/1boEvmm
  • Department of Health. 2016. Changing how healthcare education is funded. Available to download from: https://www.gov.uk/government/consultations/changing-how-healthcare-education-is-funded
  • 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. 2016. Education & training tariffs: Tariff guidance for 2016-17. Available to download from: http://bit.ly/2pKIdlz
  • 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. 2018. The Government’s mandate to NHS England for 2018-19. Available to download from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/691998/nhse-mandate-2018-19.pdf
  • Great Britain. National Health Services Act 2006: Elizabeth II. Part 3. 2006. Available to download from: bit.ly/11IcfQo.
  • Great Britain. Children and Families Act 2014: Elizabeth II. Part 3. 2014. Available to download from: http://bit.ly/1rmlG7b
  • Health Education England. 2017. Agenda for change – pay rates. Available to download from: http://bit.ly/2pYrLKJ
  • 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
  • Mott Macdonald. 2015. SEND Pathfinder Information Pack: Version 6, March 2015 – Joint Commissioning. Available to download from: http://bit.ly/1Jn6tLs
  • 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. 2016. Standards for Pre-Registration Nursing Education. Available to download from: http://bit.ly/2ox423c
  • Preparing for Adulthood. 2015. Guide to joint commissioning resources. Available to download from: http://bit.ly/1DZlcKF.

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. 2016. A Workforce Plan for Nursing and Midwifery in Northern Ireland (2015 – 2025). Available to download from: http://bit.ly/2oXE4YD

Scotland

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: http://bit.ly/2pW2Kjs
  • NHS Wales Shared Services Partnership. 2012. All Wales Nursing and Midwifery Education Initiative: Bachelor of Nursing Honours Degree: Ongoing Record of Achievement of Practice Competence: Field and Generic Competencies and Associated Practice Learning Outcomes: Child Nursing Field of Practice Nursing 2012. Available to download from: http://bit.ly/2pK83mG
  • 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
Policy and influencing