The legislation change in the 1980s, coupled with the market reforms of the 1990s, also helped pave the way for specialist disease-specific charities such as Macmillan, Marie Curie and Dementia UK to get involved in the delivery of NHS services.
For example, over the past three decades, Dementia UK has developed a well-established network of specialist dementia nurses known as Admiral Nurses, who work in a range of hospital and community settings. The model is based on the charity co-funding posts with the NHS for up to two years with the expectation that the NHS will then take on the funding.
But with demand increasing, Edwards says it is becoming a “struggle” to get the funding needed from the NHS or from donations. “We are being asked to fund them for longer or find more than half the cost,” he says. “Services are really being cut back.”
And it is not just in dementia care that charities are noticing a squeeze. The charity WellChild has helped establish a network of 54 specialist nurses who work with very sick children. It funds these posts for the first three years, before responsibility for funding is expected to transfer to the NHS.
But disappointingly for the charity, for the first time this year a nurse post was not kept on, says Amy Mitchell, WellChild’s director of programmes. What’s more, WellChild’s nurses are only meant to carry a caseloads of 15, but the average is currently 40. “Services are being dismantled – and our nurses are propping things up,” Mitchell adds.
Others in the voluntary sector agree. Charities are increasingly being asked to do more with less, says Mark Yates, chief operating officer of Rethink Mental Illness, “and there is too often an expectation that we will absorb shortfalls ourselves to keep essential services running”.
Parkinson’s UK told the BBC its funding has helped the NHS pay for around 70% of the specialist nurses working in the field – and its chief executive officer Caroline Rassell says it’s unfair on people affected by the disease.
“Charities having to fund these posts is effectively an additional ‘tax’ on people with Parkinson’s as they are our main donors,” says Rassell. “Nursing care should be the cornerstone of what the NHS offers.”