Children’s palliative care sector urged to pressure PCTs for cash

By Caroline Lovell on February 20, 2008 in Children, Disability

Primary care trusts may fail to invest in services for children with life-limiting conditions, the launch of the government’s Better Care: Better Lives, strategy was told yesterday.

Children’s palliative care providers and leaders expressed concerns that local commissioners will not fund the implementation of the government’s first strategy for children’s palliative services.

But speaking at the launch, a Department of Health spokesperson advised children’s palliative care providers and leaders to “use their muscle” to influence local commissioners.

Care Services minister Ivan Lewis told providers to point local commissioners to the NHS Operating Framework 2008-9, which identifies palliative care services as a priority, and the Aiming High for Disabled Children programme to demand more investment.

Extra funding
Alongside the launch of the strategy, the government announced an additional £20m to support hospices and hospice-at-home care for an extra two years until 2011, adding to the original grant of £27m, which runs out in 2009.

Lewis said that PCTs now have more money in their budgets to meet the needs of disabled children or children with palliative needs, which should enable them to “significantly improve services”.

But Rosa Monkton, who is a parent of a disabled child and an ambassador for the Association for Children’s Palliative Care (ACT), said: “I don’t understand the jargon, the acronyms, the politics; but I do understand in this target-driven NHS that unless PCTs are given targets, this very expensive minority of children, despite the best intentions of central government, will fall below the radar.”

Strong arm
At the launch, Sue Killen, joint chair of last years’ independent review of children’s palliative care services, asked whether PCTs were aware they had extra funding and whether they would spend it in a sustainable way.

Killen said: “You’ve got make sure you’re challenging them and make sure they’re spending this money in an effective way. I know the Department of Health needs to be hands off but sometimes a bit of strong arm tactics wouldn’t go a miss.”

Funding lifeline
Although Nuala O’Kane from the Donna Louise Trust Children’s Hospice described the extra funding as an “absolute lifeline”, Barbara Geld, chief executive of Association of Children’s Hospices, warned that children hospice services were not yet out of the woods and still relied on public goodwill for the majority of their income.

Geld added: “Most important, the extra two years will give all children hospice services just that extra bit of time to engage even more fully with their local commissioners to ensure that once this further funding expires in 2011 they are fully plugged into local commissioning arrangements.

More information

Better Care: Better Lives

Aiming High for Disabled Children

Association for Children’s Palliative Care

Donna Louise Trust Children’s Hospice

Association of Children’s Hospices