Councils are key to improving palliative care services for children

Department of Health-commissioned report published earlier this month painted a gloomy picture of the state of palliative care for children and young people in England.

The independent review of services, which took place between November 2006 and January 2007, found large variations in what palliative care services offered across the country and in their acceptance criteria. It identified a lack of joint working between the NHS and local authority children’s services saying that families faced a “constant battle” to access services.

And local authorities are singled out for their lack of engagement with palliative care services and for providing little funding. The report suggests most children with palliative care needs require social care as well as medical support and so there are “strong arguments” for greater local authority support.

Association of Children’s Hospices chief executive Barbara Gelb says there is a big divide between health and social services in taking responsibility for this group. “Social services usually say that the services are the responsibility of health. We do need to see local authorities paying some attention to this group of children.” She adds that children’s hospices are primarily funded by health, and social services provide only a small amount.

Overall, the report finds that children’s palliative care has had difficulties attracting long-term statutory funding. An accompanying report by York Health Economics Consortium found huge differences in the level of spending across the country with primary care trusts spending between 5% and 40% of their child health spend on disabled children.

Gelb hopes that the £280m the government announced last week in its Disabled Children’s Review to provide short breaks for disabled children will help and should be available to children’s hospices.

In response, the review calls on the DH to develop a national strategy for the delivery of children’s palliative care services. The government has already pledged to come back with a document by the end of this year. The review suggests the future lies in a regional or sub-regional team-based approach, with services jointly commissioned by PCTs and local authorities, and existing teams merged or expanded.

It also says more investment is needed and it recommends a national indicator for services for disabled children, including distinct measures to cover palliative care. The Disabled Children’s Review contains plans for a public service agreement on services for the group but it is unclear what specific targets this will contain.

Association for Children’s Palliative Care chief executive Lizzie Chambers says she hopes all the recommendations from the review are included in the government’s strategy. And she believes the strategy should be given teeth, so national standards are crucial, and the plan must be accompanied by funding. Palliative care networks, which would link providers and commissioners with the aim of improving commissioning, also need to be developed and funded, she adds.

Implementing the recommendations will go some way to improving palliative care, but can councils spare the funds and staff to manage yet another service?

● About 20,000 children and young people aged 0-19 need palliative care annually in England, or 18,000 if neonatal deaths are excluded.

● While the number of patients with a diagnosis indicating the need for palliative care has remained steady since 1997-8, there has been an increase in doctors’ hours in cases, suggesting an increasing demand for services.

* Source: Palliative Care Statistics for Children and Young Adults, Department of Health, May 2007

Further information
Palliative Care Services for Children and Young People in England: an independent review for the Secretary of State for Health  Independent Review of Palliative Care Services for Children and Young People

Contact the author
 Simeon Brody

This article appeared in the 31 May issue under the headline “Call for councils to boost palliative care”