MPs show support for children with life-shortening conditions

MPs from across the parties have today pressed the government to improve the care and support on offer to children and young people with life-shortening conditions.

The debate was secured by Conservative MP and former children’s hospice fundraising manager Stuart Andrew, who arranged the debate after meeting with Together for Short Lives to learn more about the challenges facing children with life-shortening conditions. The debate gave Parliamentarians from across the UK an opportunity to back Together for Short Lives’ calls for government to:

  • help improve understanding of the number and needs of children with life-shortening conditions
  • bring about more equitable and sustainable funding
  • offer better access to lifeline short breaks for families who provide round the clock care for their children
  • improve financial support to help families to transport their seriously ill children
  • provide funding to organisations to develop age-appropriate services to support transition from children’s to adult services
  • make sure there are enough people with the right skills to care for children with life-shortening conditions

Responding to MPs, Minister for Community and Social Care Alistair Burt MP said that the government is committed to improving support for families. He explained that the Department of Health is still exploring new funding systems for children’s palliative care and acknowledged that the per-patient currency being developed may overlook crucial aspects of care. Responding to questions regarding data collection and identification, he explained that the government is “exploring the potential for a flag on general practice information technology systems to allow practitioners to note when a child or a young person has a life-limiting condition”. He emphasised the importance of joint commissioning approaches to provide holistic children’s palliative care.

The minister also suggested that MPs make the case to the Department for Communities and Local Government that children’s social care should be better resourced as part of the government’s review of local government funding. Finally, he advised that the Department for Work and Pensions is responsible for determining whether access to the disability living allowance (DLA) mobility component can be extended to babies and young children under the age of three - but that ministers were committed to trying to resolve the issue.

Opening the debate, Stuart Andrew MP had praised the work of all children’s palliative care providers, including his former colleagues at Hope House and Martin House Children’s Hospice. He reminded fellow MPs that children’s palliative care is distinct from that for adults, as it is “24/7, 365, from diagnosis until death”. Jim Shannon MP (DUP, Strangford) then spoke of the dedication and determination of doctors, nurses and other professionals working in children’s palliative care and called for government to work with them to improve support.

This was followed by Rebecca Harris MP (Conservative, Castle Point) who became the first of many in the debate to highlight the work of Together for Short Lives’ Young Ambassador, Lucy Watts MBE. She called for MPs to visit Lucy’s website in order to better understand the day to day challenges affecting young people with complex needs. Angela Crawley MP (SNP, Lanark and Hamilton East) then stressed the need for better data and understanding of the numbers and needs of children with life-shortening conditions.

Many of the MPs who attended - including Gregory Campbell MP (DUP, East Londonderry), Mark Durkan MP (SDLP, Foyle) and Angela Crawley MP - called for the government to rectify the eligibility criteria for the mobility component of DLA so that children with life-shortening conditions under three who rely on bulky medical equipment could receive the benefit. Antoinette Sandbach MP (Conservative, Eddisbury) followed this by asking the minister why the new 2% additional council tax for adult social care is not available for children, saying that there is “no justifiable reason for that discrimination".

Jason McCartney (Conservative, Colne Valley), spoke about the community nursing provided by in his local area by Forget Me Not Children’s Hospice and the importance of short breaks. He told MPs that he had recently met a father who told him that on a ‘good’ night, he only had to get up eight times in the night to care for his child. This was echoed by Labour shadow health minister Barbara Keeley MP, who asked the minister to provide assurances that services will be sustainably funded and highlighted that many local authorities have cut their funding for short breaks. She then spoke of the importance of community palliative care services, including the Rainbow Trust, and called for the government to recognise their value and provide them with more sustainable funding. Highlighting the broad range of services offered by these organisations, she praised the charity for delivering sibling support, home support, hospital support and bereavement support.

Reacting to the debate, Shaun Walsh, Executive Director of External Relations at Together for Short Lives, said:

“I am really encouraged that so many MPs from across the political spectrum spoke during this morning’s important debate to highlight the issues faced by children and young people with life-shortening conditions in the UK. This is a moral rather than a political issue and I am grateful for all the members’ passionate contributions which show how much cross-party support there is for the need to transform the quality of life and death experienced by seriously ill children.

“I particularly welcome the minister’s commitment to finding a solution to enable babies and young children to access the mobility support their families so desperately need to help make the most of their short lives. Many MPs have now gone on record to say that the current DLA bar to children under the age of three is unfair; I look forward to working with the Department of Work and Pensions to resolving this issue.

“Children and their families need action now and I am keen to continue to work with government so that together we can transform the lives of children with life-shortening conditions.

You can watch recorded footage of the debate here.

Read what we asked MPs to raise with the minister during the debate here. 

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