Following the government’s announcement today of £286m for adult end-of-life care, charities representing children’s palliative care services, life-limited children and their families are asking the government why it is still refusing to spell out the funding for the children’s palliative care strategy launched in February.

At the same time, charities welcomed the government’s acknowledgment that more children with life-limiting conditions are living longer and, therefore, the transition from children’s to adult care should be carefully considered by commissioners in planning end-of-life care services.

Lizzie Chambers, Chief Executive of the Association for Children’s Palliative Care (ACT), said:

“Today’s welcome announcement complements the children’s palliative care strategy announced in February. Yet although PCTs now know what new money they are getting to improve adult services, they are still in the dark about the extra funding they have been given for children. There seems to be one rule for adults and another for children. We hope the forthcoming Child Health Strategy will clear this funding fog.”

Barbara Gelb, Chief Executive of Children’s Hospices UK, commented:

“When the government announced the children’s palliative care strategy in February, it said it was giving Primary Care Trusts substantial new funding to implement this, alongside an emergency £20m for children’s hospices. However, its reluctance to tell PCTs how much extra this actually represents is obstructing much-needed improvements in local children’s palliative care services.”

Lizzie Chambers added:

“It is good news that commissioners are now expected to plan for the transition from children’s to adult services, which could help the many young people with life-limiting conditions who are now living to adulthood. However, the strategy emphasises the needs of older adults and there is a real danger that young adults who are approaching their end of life may be marginalised or forgotten. We will be pressing PCTs to use the new funding to put in place the services and support that young adults need.”

View the new End of Life Strategy for Adults