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Support for children with life-limiting illnesses ‘not being addressed’

More than half (57%) of health and wellbeing boards are thought not to include the needs of people who are dying in their key strategies

Image: Reuters

Most councils and GP groups across England are failing to plan for the needs of dying adults and children, according to a new report.

Charity Hospice UK used the Freedom of Information Act to find out how well councils and NHS groups assessed the needs of dying people in their communities.

The results showed that most (71%) of clinical commissioning groups (CCGs) do not have a strategy for supporting children and young people living with life-limiting illnesses.

More than a quarter (27%) of CCGs, which control a big chunk of the NHS budget, do not have a strategy for addressing end-of-life-care for adults.

In excess of a third (34%) of health and wellbeing boards, which are run by councils, do not consider the needs of dying people in their assessments of local needs, the findings say.

Furthermore, some 57% do not include the needs of dying people, including under-18s, in their key strategies that inform local service planning.

Duchess of Cambridge, speaks with staff and children in the hydrotherapy pool, during her visit to the Naomi House children's hospice in Sutton Scotney in 2013: Reuters

Tracey Bleakley, chief executive of Hospice UK, said: “Local health and care needs assessments and strategies are essential building blocks for shaping vital end-of-life-care and support services for dying people.

“However, our research shows that too many boards and CCGs are overlooking the end of life care needs of people in their communities.

“End-of-life-care needs to become a core priority at a local level.

“A string of national reports has highlighted persistent failings in end of life care and what needs to change”.

  • Freedom of Information requests were sent to each of the 152 health and wellbeing boards and 209 CCGs in England.
  • Responses were received from 143 boards and 198 CCGs.

Scott Sinclair, head of policy and public affairs for Marie Curie in England, said: “Everybody dies and everybody should be able to expect well-planned, high quality care from the NHS while they are dying.

“That so many CCGs and health and wellbeing boards are not addressing this issue while the number of people dying each year is growing and demand for palliative care is increasing is deeply worrying.

“The whole NHS should be making changes now to cope with increased demand for palliative care in the future.

Professor Julia Verne, clinical lead for Public Health England’s National End of Life Care Intelligence Network, said: “There are a number of existing services doing good work to make sure people end their days with options and access to high quality care, but there is room for improvement.

“Local collaboration, understanding people’s needs, and ensuring local services are informed of and have access to reliable data is key if we want services to improve.”

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