Relatives of people denied full-funding under the NHS continuing care system are refusing to pay care charges to councils in protest, it has emerged.
So far, no one has been sued and although the protest remains small, social services directors fear it could spread because of the confusion over eligibility for continuing care and perceptions that the NHS is rationing access on cash grounds.
Twenty-four people have avoided charges for support after being denied funding and councils have paid their full fees in many cases.
Derek Cole, who acts as legal adviser for the group, said there are cases all over the country and that the protests are co-ordinated.
The protesters claim that decisions about their relatives’ continuing care were taken on cost grounds and breached the 1999 Coughlan judgement. This stated that anyone whose need for long-term care resulted from a health condition would have their costs met by the NHS.
Local criteria are based on government guidance, which is supposed to embody Coughlan. But in a recent case concerning a woman denied continuing care, a High Court judge said the guidance was unclear (news, 2 February).
Those denied continuing care typically become the responsibility of social services. Many receive the registered nursing care contribution, worth up to £129 a week from the NHS, to cover nursing needs, with most costs shared between users and councils through a means test.
Ian Perkin, whose mother Iris was denied continuing care, said Croydon Council and Croydon Primary Care Trust had been meeting her £621-a-week care package for over a year, and he had not been sued.
Perkin, who has power of attorney, said: “She’s in the end stages of vascular dementia. She can’t talk, she’s completely unaware, she’s doubly incontinent, she has to be moved by two people. After all of that, the NHS says she’s only in need of social care.”
Jeff Jerome, co-chair of the Association of Directors of Social Services disability committee, warned: “If campaigns like this take off we would have huge trouble recouping the money we need to run services.”
But he questioned NHS decision-making in some continuing care cases, saying: “I suspect a number of strategic health authorities are interpreting criteria according to cash limits, and my council colleagues shouldn’t be letting them do it.”