All-Party Parliamentary Group for Children Who Need Palliative Care

Stuart Andrew MP 02Together for Short Lives is the Secretariat for the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care, which seeks to educate, inform and motivate Parliamentarians to take action to help transform the lives of children and young people across the UK with life-limiting and life-threatening conditions. You can see a list of the group's members here.

The APPG is conducting an inquiry on the extent to which the government is meeting its end of life care choice commitment for babies, children and young people. From 24 November – 15 January, the group is keen to receive written evidence submissions from young people, families, professionals, children’s palliative care services, government, public bodies and others.

    170718 APPG 18 July 2017 image

Background

In July 2015, the government published ‘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:

  1. Respite care, delivered in a children’s hospice setting, by community palliative care services, or 'hospice at home' services.
  2. Good collaboration between different clinical and non-clinical services across a variety of different settings.
  3. Support around bereavement, both before and after a child dies.
  4. 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, as an important step forward. NICE has also recently published a quality standardon 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 we would like you to tell us

The APPG would like you to provide us with written submissions 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 here

How you can make a written submission

Please email a concise written submission of no more than 3,000 words to james.cooper@togetherforshortlives.org.uk by 9am on Monday 15 January 2018Please make sure that your submission adheres to these guidelines.

If you are a parent or carer of a child with a life-limiting condition, why not take part by completing this simple online survey

What will happen when the call for written evidence has closed?

The APPG will consider all submissions and invite selected witnesses to provide oral evidence at four two-hour sessions in February and March 2018 to APPG members and an expert advisory committee. The sessions will focus on the following topics: 

  • Session one: young people and families:
  • Session two: children’s palliative care providers: individuals and organisations 19
  • Session three: commissioners (statutory planners and funders) of children’s palliative care
  • Session four: government departments, NHS England and NICE.
  • Session five: the children’s palliative care workforce.

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.

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

    Vice-Chairs

The following Parliamentarians have joined as members of the APPG:

You can find out more about the relaunch of the APPG in the new parliament here.

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.