Palliative Care: Children and Young People

(asked on 8th March 2018) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether his Department has assessed the potential merits of mandating the implementation of the Government’s end of life care choice commitment for babies, children and young people on (a) NHS England and (b) Public Health England.


Answered by
Caroline Dinenage Portrait
Caroline Dinenage
This question was answered on 13th March 2018

On 5 July 2016 we published Our Commitment to you for end of life care, which set out what everyone should expect from their care at the end of life and the actions we are taking to make high quality, personalised care a reality for everyone, including infants, children and young people. We remain committed to improving services and ending variation in end of life care by 2020. A copy of Our Commitment to you for end of life care can be found at the following link:

www.gov.uk/government/publications/choice-in-end-of-life-care-government-response

Through the Mandate, we have asked NHS England to deliver the Choice Commitment, and through NHS England’s National Programme Board for End of life Care, a range of activity is being undertaken with all key system partners, including Public Health England (PHE) and Health Education England (HEE) to achieve this. The HEE Mandate sets out an objective to deliver the parts of the Choice Commitment relevant to training and education in end of life care. The remit letter from the Government to PHE sets out the high level objectives for PHE, but it is not exhaustive and does not include every disease or area of care relevant to PHE activity. However, the letter sets out a range of requirements around, information, data, tools and guidance to support the system to meet legal duties to improve the public’s health and reduce health inequalities. In response, PHE’s end of life care intelligence network provides an extensive range of data on services and outcomes to improve end of life care and reduce inequalities.

To support health and care professionals employed by the National Health Service and other agencies to meet the Government’s end of life care choice commitment to infants children and young people by 2020 a range of activity has been undertaken. In 2017 HEE, in partnership with Skills for Care and Skills for Health, published refreshed End of Life Care Core Skills Education and Training Framework. This aims to standardise end of life care training and education, and as the guidance sets out, much of it is applicable to infants and young children. A copy of the framework is available at the following link:

www.skillsforhealth.org.uk/services/item/536-end-of-life-care-cstf-download

NHS England has published an End of Life Care Commissioning Toolkit which provides a wide range of links to tools and sources of support for both commissioners and providers of services. It sets out best practice and seeks to demonstrate what a well-commissioned end of life care service looks like, and the guidance is relevant to infants, children and young people.

NHS England is also working with key stakeholders, including end of life care charities, to support the implementation of The Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020. The framework exemplifies the Government’s commitment to ensuring everyone, including infants, children and young people, can receive high quality, compassionate and personalised care and sets out the actions that will be taken in local areas to improve care. Through the Ambitions Partnership knowledge Hub, a range of guidance on training and service planning, including case studies, has been made available.

The Department also asked the National Institute for Health and Care Excellence (NICE) to develop guidance on end of life care for children. As a result, in December 2016, NICE published End of Life Care for Infants, Children and Young People: Planning and Management, to support local services in the delivery of high quality end of life care particular to the needs of this group of patients, and their families. The guidance covers the planning and management of end of life and palliative care for infants, children and young people with life-limiting conditions. The guidance (which covers those aged 0–17 years) was developed with the help of children at the end of their lives, as well as their brothers and sisters, in order to reflect what they felt was important from their care.

The Government’s end of life care commitment progress report, published on 21 September 2017, highlighted specific work on the NICE guidance NHS England has commissioned from Together for Short Lives, who are the leading children’s end of life care charity. Together for Short Lives are examining services across the country to identify best practice in implementation of the guidance, as well as the current barriers, through interviews with local NHS services. Copies of One year on: the government response to the review of choice in end of life care, and the NICE guidance, can be found at the following links:

www.gov.uk/government/publications/choice-in-end-of-life-care-government-progress

www.nice.org.uk/guidance/ng61

Finally, as the national body for education and training, HEE provides national leadership and co-ordinates workforce planning, education and commissioning activity to ensure that sufficient numbers of skilled workers are available for the NHS in England. At a local level, each NHS provider produces an assessment of their future needs that form the basis of local area plans, which are then used by HEE to create meaningful forecast at a national level and the basis for discussion with stakeholders as to whether this supply will match the system's view of future demand. This analysis and discussion is then used to identify whether any changes are required to the volumes of training commissioned by HEE.

The NHS employs more staff now, in 2018, than at any other time in its 69 year history with significant growth in newly qualified staff. Although data does not specifically identify nursing specialities, such as palliative care, in palliative medicine, there are 626 (full time equivalent) doctors working in palliative medicine, which is 179 more (40.1%) since May 2010.

HEE has made no assessment of the availability of health care professionals for children’s hospices or the effectiveness of this availability. The vast majority of hospices are independently run and recruitment and retention of staff would be a matter for individual hospices or hospice organisations.

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