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Last Updated: Sunday, 5 March 2006, 22:00 GMT
Refusing to pay for care
Ian Perkin
Most people who are told by the National Health Service, or social workers, that they'll have to find the money to pay for the long-term care of a sick or elderly relative simply go along with it.

So when Val Wright's elderly parents had to go into a nursing home she was not told about the possibility of free NHS care. Instead she was told she had to sell their small retirement bungalow on Canvey Island, and she simply went along with it.

"I was told by the powers that be that I had to sell it within 12 weeks of them going into the nursing home," she said. "You just don't argue with these people. I had a full time job and I was commuting to London from Essex.

"I had two sick parents and you just don't question it. I just thought well if that's the law that's the law."

But that was in 2000. Since then, more and more people have become aware that the system for denying NHS free care is unjust and, sometimes, unlawful.

Many have appealed against being turned down for continuing care, using the NHS' internal procedures: but there are real doubts about how independent these reviews are, on top of which complainants are not allowed to be legally represented.

For a guide to the NHS review process see:

Only when these time-consuming internal procedures are exhausted will the Health Service Ombudsman review a case.

Authorities caving in

So more and more people are turning to the law and finding a solicitor who specialises in this area. There is anecdotal evidence that, faced with the prospect of litigation, many health authorities cave in. This route can be expensive: but then the loss of a family home is expensive as well.

And the Grogan family got legal aid to take their case to judicial review. Faced with all these difficulties, some individuals are simply refusing to pay and directly to challenge the system by frustrating it.

Campaigners like Stephen Squires, who have taken on the system and won, give advice on the internet.

Among those we found fighting for continuing care were:

IAN PERKIN

Ian Perkin was the finance director of St George's NHS Trust in London for 12 year until 2002.

In 2001, he blew the whistle when he discovered that the Trust had altered figures on the number of cancelled operations.

He is now a treasurer of a Police Authority. He's also a member of the Coughlan Campaign Group which advises people who find themselves in dispute with the NHS/ Social Services over the funding of care for their elderly relatives.

In 2003, Ian's mother, who suffers from vascular dementia, was admitted to hospital following a fall.

She was then transferred to a long-stay geriatric hospital but when it closed down, Ian was told he would have to pay for his mother's care in a nursing home from her own resources.

Ian has refused to pay for his mother's care, arguing that he thinks she passes the Coughlan test and so is entitled to free NHS funded continuing care.

No legal charge has been placed on the property.

We talked to Ian Perkin about his mother's case. Our reporter, Vivian White, started by questioning him about what he did when he was first sent forms asking for details of his mother's resources.

Mr Perkin is a member of the Coughlan Campaign Group.

KATE MEAGER

In August 2004, Rose Fulcher collapsed in the street whilst out shopping. She had suffered a sudden stroke and was rushed to Queen Mary's Hospital in Sidcup. Rose survived and began to recuperate, but it was obvious that she would never be able to return home - she would require continuing care for the rest of her life.

It wasn't long before Kate Meager, Rose's niece, was contacted by a social worker who told her that Rose's house would have to be sold to pay for her residential home fees. The possibility that the house would be lost seemed very real.

The first step Kate took to fight back was to secure an enduring power of attorney over her Aunt's affairs.

A month later, in December 2004, Kate wrote to her MP quoting statements made by Lord Hunt in the House of Lords to the effect that "the patient will remain in hospital until the dispute about eligibility for continuing NHS care has been resolved".

However, after eight months in hospital, it became apparent that the NHS didn't consider either of these to be a barrier to moving Rose into a home. They wanted her out.

In April 2005, a consultant approached Rose's bedside and tried to get her to sign a document revoking Kate's power of attorney - if she signed she was promised that she could go to a home straightaway. Rose didn't sign.

Warning fax

The power of attorney ensured that nothing could happen without Kate's agreement, and she was not about to agree to something which she knew was not in her Aunt's best interests.

Kate immediately got her solicitor to send the hospital a fax - warning them about attempts to persuade Mrs Fulcher to sign a new power of attorney. The attempts ceased.

Kate also sent a copy of all her correspondence regarding Rose's case to the district auditor because any bills picked up by social services, which should have been paid by the NHS, could amount to unlawful payments by the local authority.

Ultimately Kate won her fight with Bexley PCT, and on 10 October 2005, she received a letter stating that NHS Continuing Care had been granted. Six days later Aunt Rose died in her nursing home.

Kate remains adamant that the system is wrong:

"You shouldn't have to have this fight. If you're ill you should be looked after. It shouldn't be something that people should have to worry about or fight for."

CHERYL BYRNE

Cheryl found out that her father, Eric, had developed Alzheimer's towards the end of 2003 and she decided to get enduring power of attorney (which she shares with her brother) in order to manage her father's affairs in January 2004.

Eric went into hospital in early 2005 and Cheryl has fought hard since then to keep him there, believing that the acute assessment ward for elderly dementia patients where he is a patient provides "the level of care that he needs".

To date, he is still a patient at the hospital due to her efforts to keep him there. Attempts have been made to have him discharged to an EMI residential or an EMI nursing home but Cheryl has resisted these, partly because she's been unable to find a suitable home for him, given the level of his care needs.

She says that she "would pay any price" to know that her father was well cared for but that these kinds of homes simply cannot cater for someone with her father's complex needs and that hospital is absolutely the most suitable place for him.

Care disputed

She feels that Eric should certainly qualify for NHS continuing care on the basis of the Coughlan test but he has yet to have a full continuing care assessment as, Cheryl believes, staff at the hospital do not understand the correct approach to a continuing care assessment.

Cheryl argues that he should stay in hospital whilst this situation is being disputed, on the basis of what Lord Hunt said, during a debate on the Delayed Discharges etc Act in 2003, to the effect that a: "... patient will remain in hospital until the dispute about eligibility for continuing NHS care has been resolved".

Cheryl's particularly concerned with the way that anti-psychotic drugs are used to enable patients like her father to be sedated and then classified as in need of only social care.

In her case, she asked that her father be given a continuing care assessment (without medication) whilst in hospital.

Not eligible

She says that a consultant said he would meet the criteria because her father was showing challenging behaviour, he was resistive to care and mobile (and so he was difficult to care for).

However, the primary care trust (PCT) believes him to be "stable and predictable" and so not eligible for NHS continuing care.

Once Cheryl had secured power of attorney, she refused to allow social services to be involved in her father's case after her wish to bring her father home in December 2004 was not endorsed by them on the basis that they couldn't support her father at home and that he needed specialised care.

She says that, without her permission, the hospital couldn't consult with social services about her father's future care plans.

This means, she says, that the responsibility for his care remains with the NHS and that she's ruled out the option of means-tested care for her father in the future - as his needs are health needs.

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