All Party Parliamentary Group for Children Who Need Palliative Care

An All Party Parliamentary Group (APPG), chaired by Dr Caroline Johnson MP Sleaford and North Hykehamand  Catherine McKinnell MP Newcastle-Upon-Tyne North is undertaking an enquiry into the extent to which the government is meeting its end of life care choice commitment for babies, children and young people in England.

The inquiry’s terms of reference include:
• Whether children in England with life-limiting and life-threatening conditions are currently able to exercise choices over the palliative care they need
• What barriers are preventing children from making these choices – and preventing services from offering them
• What the opportunities are for improving the extent to which children and families can make these choices.

The APPG has been seeking 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.

The APPG held four oral evidence sessions with selected witnesses in February and March 2018. You can download and listed to audio recordings of all the sessions, in addition to lists of the witnesses who provided oral evidence, here.

In the second half of 2018, the APPG will publish a report of the inquiry which includes:

  • the findings from the inquiry
  • a series of recommendations
  • the written evidence we receive as part of the inquiry
  • transcriptions of the oral evidence received.

Please contact james.cooper@togetherforshortlives.org.uk for more information about the inquiry or visit www.togetherforshortlives.org.uk/appg