Parliamentary inquiry into children's palliative care choices

MPs and peers issue call for evidence on palliative care choices for babies, children and young people

The All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care has today (24 November) launched an inquiry on the extent to which the government is meeting its end of life care choice commitment for babies, children and young people. Until 15 January 2018, the APPG is inviting written evidence submissions from young people, families, professionals, services, government, public bodies and others who can offer their views on the barriers and opportunities to improving children’s palliative care choices in England.

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. It sets out that commissioners must prioritise children's palliative care in their strategic planning so that services can work together seamlessly and advance care planning can be shared and acted upon. The government published a ‘One Year On’ progress report in September.

Both the commitment and a subsequent guideline on providing children’s palliative care produced by the National Institute for Health and Care Excellence (NICE) emphasise that children and their families should be able make choices about the palliative care they receive.

Together for Short Lives’ new evidence derived from freedom of information requests shows that despite some areas of good practice, almost half (46%) of local NHS planning and funding organisations in England (known as clinical commissioning groups, or CCGs) are failing to implement the government’s end of life care choice commitment for children and young people and have no plans to do so. Only a third (35%) of CCGs responded that they are implementing it, while a further 19% stated that they are developing plans to do so.

As a result, the APPG has decided to conduct the inquiry to assess the extent to which children and young people in England with life-limiting and life-threatening conditions - and their families - can reasonably expect to make about the care and support they receive. The inquiry will also examine:

  • whether children and young people in England with life-limiting and life-threatening conditions are currently able to exercise these choices
  • what barriers are preventing children and young people 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.

Dr Caroline Johnson MP, Co-Chair of the APPG, said:

“It is excellent that the government’s 2016 end of life care choice commitment extended to babies, children and young people with life-limiting and life-threatening conditions. Ministers were very clear on what they expected commissioners to do. One year on, the APPG is keen to focus its first inquiry on what meaningful choice for children and their families means, and whether this is being realised. We welcome views from a wide range of people, regardless of the sector or setting they represent.”

Catherine McKinnell MP, Co-Chair of the APPG, said:

“There is now a lot of policy and guidance for planners, funders and providers which makes a compelling case for enabling seriously ill children to have their say over how and where they receive palliative care. I and my colleagues on the APPG want to know if there are any barriers which are stopping children and families being able to make these choices - and, if so, what the government, NHS and others can do to overcome them. We would like to hear from families, professionals, commissioners, providers and ministers and invite anyone who has evidence to share to submit it to our inquiry."

Any organisation or member of the public can make a written submission of no more than 3,000 words to james.cooper@togetherforshortlives.org.uk by 9am on Monday 15 January 2018. Young people with life-limiting or life-threatening conditions and families of babies, children and young people can take part in the inquiry by completing this survey at https://www.surveymonkey.co.uk/r/APPGCPCchoice if they prefer. The APPG will 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 APPG will publish a report of the inquiry in the second half of 2018.

You can find out more about the APPG for Children Who Need Palliative Care and the terms of reference for its inquiry at www.togetherforshortlives.org.uk/appg

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