Together for Short Lives
Call the Helpline 0808 8088 100

All-Party Parliamentary Group for Children Who Need Palliative Care

End of life care: strengthening choice

Download the APPG’s inquiry report, published on 21 October 2018, here.

Take action now by writing to your MP

Together for Short Lives is the Secretariat for the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care within the UK Parliament. The APPG is a cross-party group of MPs and peers which seeks to educate, inform and motivate other parliamentarians to take action to transform the lives of children and young people across the UK with life-limiting and life-threatening conditions.

Between November 2017 and October 2018, the APPG conducted an inquiry into the extent to which the government is meeting its end of life care choice commitment for babies, children and young people. This was published in July 2016 in the government’s ‘Our Commitment to You for End of Life Care’. This sets out what ministers expect commissioners to achieve for babies, children and young people with life-limiting and life-threatening conditions, including:

  • Respite care, delivered in a children’s hospice setting, by community palliative care services, or ‘hospice at home’ services.
  • Good collaboration between different clinical and non-clinical services across a variety of different settings.
  • Support around bereavement, both before and after a child dies.
  • Prioritisation of children’s palliative care in commissioners’ strategic planning so that services can work together seamlessly and advance care planning can be shared and acted upon.

In September 2017, the government’s ‘One Year On’ report gave an update on progress made in meeting the commitment it made when it responded to the end of life care choice review. It rightly cites the National Institute for Health and Care Excellence’s (NICE) guideline End of Life Care for Infants, Children and Young People: Planning and Management, published in December 2016, as an important step forward. NICE has also published a quality standard on the same topic, which is another important guide to help the NHS, voluntary and private sectors to better plan, fund and provide children’s palliative care.

The ‘One Year On’ report also reiterates the government’s commitment to improve bereavement services for families whose child has died. This includes the introduction of a new entitlement to bereavement leave for parents, a policy which Together for Short Lives campaigned for and will help to support families during this incredibly distressing time.

What questions did the APPG ask families, services, professionals and the public ?

The APPG sought views on the following questions:

  1. What choices can children and young people in England with life-limiting and life-threatening conditions – and their families – reasonably expect to make about the care and support they receive? Do these vary in relation to different conditions?
  2. Can children and young people in England with life-limiting and life-threatening conditions make these choices? To what extent is this the case? Is this being measured – and, if not, can it be? Do these vary in relation to different conditions?
  3. What are the barriers preventing children and young people from making these choices? Do these vary in relation to different conditions? Are there barriers which are preventing services from offering choices?
  4. What are the opportunities for improving the extent to which children and families can make these choices? What policies do the government, NHS England and others have in place to improve choice for children? Are there examples of where children and families have been offered choices that others can learn from, including from Northern Ireland, Scotland and Wales?
  5. What actions can the following individuals and organisations take to improve the extent to which children and families can make these choices?
  • Children and young people with life-limiting or life-threatening conditions
  • Families
  • Providers of children’s palliative care in the statutory, private and voluntary sectors
  • Government
  • NHS England
  • NHS commissioners
  • Local authorities
  • Workforce planners
  • Educators
  • Charities including Together for Short Lives.

You can read the terms of reference for the inquiry in the document on the right-hand side of this page.

How did the APPG carry out the inquiry?

As a result of its call for written evidence, which began on 24 November 2017 and ended on 15 January 2018, the APPG received 28 submissions. Links to all of these are listed in Appendix Three of the APPG’s report.

Additionally, we received 25 responses to a survey of families caring for children with life-limiting conditions.

Following the end of the call for written evidence, the APPG held four oral evidence sessions on the Parliamentary estate. We recorded each one and all are available to download and listen to as podcasts from https://togetherforshortlives.podbean.com/

The transcripts of each session are available to download and read here:

For more information please contact the APPG’s secretariat:

James Cooper

Public Affairs and Policy Manager

Together for Short Lives

0117 989 7863

0741 522 7731

james.cooper@togetherforshortlives.org.uk

The group

The officers of the group are as follows:

Co-chairs

  • Dr Caroline Johnson MP (Conservative, Sleaford and North Hykeham)
  • Catherine McKinnell MP (Labour, Newcastle upon Tyne North

Vice-Chairs

  • Sarah Champion MP (Labour, Rotherham)
  • Neil Gray MP (SNP, Airdrie and Shotts)
  • Jim Shannon MP (DUP, Strangford).

The following Parliamentarians have joined as members of the APPG:

  • Dr Lisa Cameron MP (SNP, East Kilbride, Strathaven and Lesmahagow)
  • The Lord Carlile of Berriew (not affiliated to a political party
  • Martyn Day MP (SNP, Linlithgow and East Falkirk)
  • Mary Glindon MP (Labour, North Tyneside)
  • Luke Graham MP (Conservative, Ochil and South Perthshire)
  • Carolyn Harris MP (Labour, Swansea East)
  • Sharon Hodgson MP (Labour, Washington and Sunderland West)
  • Rt Hon George Howarth MP (Labour, Knowsley)
  • Darren Jones MP (Labour, Bristol North West)
  • The Earl of Listowel (Crossbench)
  • David Linden MP (SNP, Glasgow East)
  • Paul Masterton MP (Conservative, East Renfrewshire)
  • Steve McCabe MP (Labour, Birmingham Selly Oak)
  • Jessica Morden MP (Labour, Newport East)
  • Alison McGovern MP (Labour, Wirral South)
  • Sheryll Murray MP (Conservative, South East Cornwall)
  • Liz McInnes MP (Labour, Heywood and Middleton)
  • Claire Perry MP (Conservative, Devizes)
  • Rt Hon Stephen Timms MP (Labour, East Ham)

Please contact James Cooper if you are are parliamentarian interested in joining the APPG – or anyone who is interested in finding out more about the APPG’s work.

Policy and influencing