•    New survey reveals poor understanding of PCT funding allocations
•    Not one English PCT can quantify spend on services for disabled children or children with palliative care needs
•    Campaigners call for action from Ministers and PCT leaders

In the week that professionals debate the future of the health service at the NHS Confederation Conference, the Every Disabled Child Matters campaign (EDCM) working with three major UK charities (ACT (Association for Children’s Palliative Care), Children’s Hospices UK and Whizz-Kidz) is revealing survey results showing that not one Primary Care Trust (PCT) in England is able to specify how much funding they will be spending on essential health services for disabled children.

This is despite disabled children being a local priority group in this year’s NHS Operating Framework, coupled with repeated assurances from Ministers that PCTs have additional baseline funding for disabled children and children with palliative care needs, and that they are expected to match local authority children’s services spending commitments.

The charity coalition wrote to every PCT in England asking questions about spend on disabled children. The 30 responses received revealed confusion at a senior level as to how health service funding is allocated and spent.

The partners are now calling for:
•    The Department of Health to clarify the total national allocation to services for disabled children and children with palliative care needs, and the formula by which this funding has been allocated for PCTs
•    PCTs to specify how much they will spend on services for disabled children and children with palliative care needs in the current and subsequent years

Responses to the survey showed PCT’s lack of clarity about how the current NHS funding system is operating. Some PCTs were awaiting further information from the Department of Health ‘which will determine how much of the new national funding has been allocated to each PCT’ whilst others said that ‘new funding has gone into PCT baseline budgets [which] is actually part of the PCT’s general uplift and is not ring fenced for disabled children’ – suggesting that without ringfencing, it may not be spent on disabled children’s services.

Steve Broach, EDCM Campaign Manager, comments:
‘Health services are vital to families with disabled children. So while we are delighted with the clear commitment from central government that disabled children are a new priority, it is extremely worrying that there appears to be a total lack of clarity locally of what this means in practice for PCTs.

We need a clear position from government and leadership locally to ensure rhetoric becomes reality. We look forward to publication of the Child Health Strategy which provides the opportunity for clarity.’

‘Aiming High for Disabled Children’, launched in May last year, brings with it £430 million new funding from the Department for Children, Schools and Families, with the majority (£370 million) for short breaks. The vast majority of this funding is being allocated to councils in ringfenced grants to improve services.

‘Aiming High’ also includes a commitment to allocate additional resource within the current spending round to improve wheelchair and community equipment provision for children and young people.
And in December 2007, Ministers wrote to all local authority and PCT leaders confirming that ‘new growth funding has been included in PCT baseline allocations to enable PCTs to work with local authorities to significantly increase the range and number of short breaks'. The letter also confirmed that there is growth funding to deliver the forthcoming children's palliative care strategy.

Speaking in Parliament recently, Children’s Secretary Ed Balls stated that it was ‘clear nationally, in our Department and in the Health Department, that PCT’s must find the money to fund short breaks’ and urged MPs and parents to hold to account PCTs who did not fund services sufficiently.

At the Aiming High for Disabled Children conference in May, a Department of Health official answering panel questions said ‘there is enough funding in PCTs [baselines] for you to be equal partners.'

Ruth Owen, Chief Executive of Whizz-Kidz, added:
‘We encourage PCTs to exercise strong local leadership to deliver the transformation that is needed to meet the holistic needs of growing disabled children.  This means PCTs releasing targeted funding, to deliver a cost effective wheelchair service that gets the right mobility equipment, together with ongoing support, to every disabled child without delay.

We also look forward to an announcement on the Transforming Community Equipment and Wheelchair Services Programme to deliver radical reform at a national level and support this step-change in provision.’

Lizzie Chambers, Chief Executive of ACT, states:
‘Children’s palliative care services, which provide essential support for small numbers of children with high levels of need has always relied on patchy and unsustainable funding.  The lack of clarity about funding for this highly vulnerable group of children is a real test for the new devolved NHS’.

Barbara Gelb, Chief Executive of Children’s Hospices UK said:
‘If England’s children’s hospice services are to achieve sustainable funding levels from local PCTs, then more transparency from Government about its health service funding allocations is essential. ‘