Two disabled people will challenge the government in court this month over its refusal to allow them to use direct payments to manage their own long-term healthcare.
They will argue that the decision discriminates against them and breaches their human rights.
The government is fighting the case despite passing new legislation in November that will allow the NHS to use direct payments. It is now preparing to pilot their use in some primary care trusts (PCTs).
Valerie Garnham, who has a progressive neuromuscular condition, was one of the first residents of Islington in London to receive direct payments for care services, but a serious illness seven years ago meant she needed a permanent tracheotomy and ventilator.
She became eligible for NHS continuing care and began receiving direct payments for her health needs from Islington PCT, paid through her council.
But two years ago, the PCT told her she would have to receive her healthcare through an agency, because of new government guidance.
Garnham lost a court battle to challenge this decision last year, but won an interim injunction forcing the PCT to allow her to continue receiving direct payments until her appeal was over.
Now lawyers for her and Steven Harrison, from Yorkshire – who is also fighting for the right to healthcare direct payments – will argue their case at the court of appeal.
They will say the Department of Health (DH) has the power to allow direct payments to be paid to service-users, and by denying them to those receiving healthcare services, it is discriminating against disabled people and breaching their right to a private and family life, under the European Convention on Human Rights.
Garnham said it could cost three times as much to provide agency nurses than her current arrangement, her quality of life would suffer, and she would feel less secure than she does with the trusted staff she has helped train herself.
She said: “It would remove my control. It would be impossible to match the flexibility that we have at the moment.”
Her solicitor, Frances Lipman, from the Disability Law Service, said: “This is a very important case.
“What is the difference between someone on NHS and someone on social care?
“It goes to the heart of disabled people’s lives and how they manage their care.”
The DH said it could not comment because of the pending appeal.
5 January 2010