Children’s palliative care: special report

An estimated 20,000 children in the UK suffer from life-limiting conditions and many rely on palliative care to improve their quality of life.

However, an ongoing funding crisis among England’s 34 children’s hospices (those in Scotland and Wales are generally in a stronger position), has prompted fears over the sustainability of some services. Children’s hospices are voluntary organisations and help around 4,000 children every year.

In desperation at the situation, a delegation from the Association of Children’s Hospices met Tony Blair last month to press their case for more funding 

And they must have presented a very powerful argument to the Prime Minister because, only two weeks after the meeting, they were celebrating a £27 million lifeline from the government that will save some services over the next three years.

Emergency respite care
The funding will allow hospices in England to offer services ranging from help at home and emergency respite care to end-of-life care in hospices.

Children’s hospices have faced particular financial difficulties this year as they come to the end of three-year lottery funding worth a total of £5.8 million a year. This forced the closures of four beds at each of Acorns Children’s Hospice’s Trust’s three 10-bed units in the West Midlands.

However, these circumstances and the emergency funding package do not disguise the need for a fundamental rethink of the way in which children’s hospices are funded.

Statutory agencies, mainly primary care trusts but also social services, contribute around five per cent of the average children’s hospice’s £1.5 million annual running costs.

But this compares unfavourably with their commitment to adult hospices, which receive around a third of their funding from the statutory sector.

Children’s hospices have to rely to a far greater extent on fundraising with companies, trusts and individuals to generate income to run their services.

This issue was highlighted in a report in 2004 from the Commons health select committee, which said the NHS had “relied heavily on the goodwill and charitable funding of the hospice movement” and advocated a “fundamental shift in funding from the voluntary to the state sector”.

Catalyst for improvment
The report also said the children’s National Service Framework which was published later in 2004, would be a “possible catalyst for improvement in children’s palliative care services”.

The framework outlines the need for “close co-ordination and close liaison between agencies” in providing palliative care for children.

An extra tool to implement the NSF came last year in the shape of a government guide to commissioning children’s palliative care services.

This says that, under the government’s aim for the public sector to meet the full costs incurred by charities in running public services, PCTs should cover all the costs of the services they commission from hospices.

This does not always seem to happen on the ground.

Peter Ellis, chair of the ACH and chief executive of the Richard House Children’s Hospice in London, says there should be a major shift in the balance of funding so that statutory agencies take responsibility for funding core clinical services, while hospices concentrate on other areas such as buildings or social activities.

Statutory agencies
“If a child was not with us they would be in hospital or looked after by a community nurses, around the clock in some cases,” he adds, pointing out that, in these cases, statutory agencies would fund services.

There is no central guidance on the amount that children’s hospices should receive from the statutory sector so each has to negotiate a figure locally.

But this is further complicated by the fact that some hospices have to deal with numerous primary care trusts – up to 22 at one point in the case of Acorns.

The 34 children’s hospices in England deal with a total of 303 primary care trusts, although this will fall to 152 later this year following the government’s restructuring of the NHS.

This situation makes it particularly important that the NHS develops regional strategies for commissioning children’s palliative care services, a policy that former care services minister Liam Byrne was promoting before his transfer to the Home Office in May.

Ellis says there should be more partnership working between hospices and statutory agencies so provision is planned more strategically.

“The statutory and voluntary sectors both have something to bring to the party and that includes the funding side,” he says. “We are able to raise money from the general public and we can add that as a contribution to what the statutory agencies can put forward.”

Photo: Association of Children’s Hospices