Peers press government to improve children’s palliative care planning

A number of peers have called for the government to transform the way in which children’s palliative care is planned, funded and provided in England.

On Tuesday (14 March), several peers called on the government to make sure that NHS commissioners and local authorities are aware of their responsibilities to children and life-limiting and life-threatening conditions during a House of Lords debate. This was secured by Crossbench peer Baroness Finlay of Llandaff, who called on the government to set out how it will implement the recommendations made in ‘Our Commitment to you for end of life care The Government Response to the Review of Choice in End of Life Care’.

During the debate, peers including Liberal Democrat Work and Pensions Spokesperson Baroness Bakewell, Lord Judd (Labour), Lord Suri (Conservative), Baroness Wheeler (Labour) and Lord Carlile (Vice-Chair of the new All-Party Parliamentary Group for Children Who Need Palliative Care) used their speeches to highlight the challenges facing children with life-limiting and life-threatening conditions, their families and the services that support them. Their speeches referred to:

  • our campaign to extend DLA mobility benefits to children aged 0-3 who must always be accompanied by bulky medical equipment and/or need to be near a motor vehicle in case they require treatment for their condition.
  • the National Institute for Health and Care Excellence (NICE) recommendation that children’s palliative care managed clinical networks should be established.
  • a ‘worrying lack of consistency across commissioning groups (CCGS)’, as identified in our commissioning maps of children’s palliative care.
  • the need for CCGs to recognise and fund services delivered by voluntary sector children’s palliative care organisations.

Baroness Wheeler spoke of the lack of funding for children’s palliative care charities and stated that she hopes ‘that that the Government will undertake to work with charities such as Together for Short Lives to produce guidance for CCGs that outlines best practice and makes their responsibilities clear’.

Responding on behalf of the government, Lord O’Shaughnessy, the Parliamentary Under Secretary of State for Health, stated that he agreed ‘with all the noble Lords about the importance of palliative care for children’. He said that the £11 million children’s hospice grant, which is distributed between children’s hospices in England, is designed to support charities ‘on top of what clinical commissioning groups do’.

Our full summary of the debate is available here.

Responding to the debate, Barbara Gelb OBE, Chief Executive of Together for Short Lives said:

“It is clear that peers are determined to support children with life-limiting and life-threatening conditions and to address the postcode lottery of children’s palliative care commissioning.

Children who need palliative care - and their families - rely on a wide range of professionals and services. It is simply not fair that children in some areas are unable to access services such as out-of-hours community children’s nurses which support them to be cared for at home.

We are hugely grateful to Baroness Finlay for tabling the debate last night and to all the peers who took part. We will follow up the issues raised with ministers and we hope that the government will listen to Baroness Wheeler’s calls for them to work with us to produce guidance for setting out their responsibilities for commissioning children’s palliative care.”

You can read the briefing which we provided to peers ahead of the end of life care debate here.

A full transcript of the debate is available here.

A video recording of the debate is available here.

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