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Last Updated: Friday, 16 July, 2004, 14:46 GMT 15:46 UK
The struggle with continuing care

by Andy Davies
BBC Panorama reporter

Peter Bennett still adores his wife, Ann, even though he means almost nothing to her.

"Are you my treasure?'' he asks tenderly, stroking her forehead, "my wee little sweetheart?''

Ann says nothing, offering only an infantile, melodic jumble of sounds and an empty stare over his shoulder. She was the bright young history teacher from Whitehaven, Cumbria, whom Peter asked to marry him four times.

She was the woman, he says, who became his "whole life''. Now, aged 62, she cannot speak, move or feed herself. Peter is not even sure if she knows who he is.

Three quarters of a million people in the UK have dementia. Two thirds of them, like Ann Bennett, have the degenerative brain disease Alzheimer's.

For people like Peter who have to stand by, in despair, and watch this vicious illness slowly dehumanise their partners, life is hard enough. So why, for some of them, is it made even harder?

Peter and Ann
Peter has vowed to fight the NHS to get the right care for Ann
Perfect solution

As well as nursing Ann intensively around the clock, the affable 69 year old former mayor of Copeland has spent the past year embroiled in a relentless and, at times, unedifying struggle with the NHS.

At one point he was reduced to writing to his local health trust to declare that he would "fight them until his dying breath'' to get the right care for his wife.

The reason Peter felt compelled to throw down the gauntlet in such belligerent fashion stems from the West Cumbria Primary Care Trust's decision, last September, to reject his application for NHS Continuing Care, a programme via which people with long-term illnesses can apply for all of their care to be arranged and funded solely by the NHS (in any setting, including at home).

This was the perfect solution for Peter, who was desperate to for Ann to stay at home.

The health trust argued that Ann's needs were primarily for social care (such as washing and feeding) and not health care, and that Ann was being regularly monitored by her GP and district nurse, among others.

Appeal

Peter was incandescent. "How could they possibly make that judgment", he says, "when Ann suffers from epilepsy, needs help to breathe and is often at risk of choking to death on her own mucus?".

He challenged the decision. Ann was reassessed and, once more, he was told that, effectively, she just wasn't ill enough to qualify.

Where others would have accepted that judgment and quietly backed down, Peter stood his ground.

He brought in the Health Ombudsman and launched an appeal. At the end of February, however, he learned that the Appeal had been postponed. A few days later he suffered a stroke.

Soon afterwards, the health trust brought in an emergency care package. Then, they conceded that Ann did, in fact, qualify for NHS continuing Care.

Not only that, they even admitted that she probably should have been granted the care as long ago as January 2003 when Peter first inquired about it. Thus was a tired and ill man vindicated, and the NHS not a little humbled.

Embarrassed

It's an expensive package of care...It is about money.
Stephen Ladyman, minister in charge of Continuing Care
It was never meant to be like this. Last February the Health Ombudsman, Ann Abraham, investigated the issue of Continuing Care and presented the government with a warning.

She said: "A pattern is emerging of NHS bodies struggling and sometimes failing to conform to the law...resulting in actual or potential injustice arising to frail elderly people and their relatives. The indications are that problems may be widespread''.

Last month the government announced that it was looking at a staggering 11,724 cases (dating back to 1996) where people may have been wrongly denied NHS Continuing Care.

Halfway through their investigations, the Department of Health has already awarded 800 people a share of the 180m set aside to compensate those who were entitled to the care but never received it.

"We're very sorry'' says Stephen Ladyman, the health minister responsible for Continuing Care, "It should never have happened''.

He appears genuinely embarrassed by the issue, but his remorse is mirrored in equal measure by confidence that the system is now repaired.

As each health authority in England and Wales has had to organise a major review of its procedures on continuing care, Ladyman believes the system is now working properly: "It simply is fair,'' he asserts.

Greatest concern

Peter and Ann
As well as caring for his wife Ann, Peter has had to fight the NHS
But if that is the case, then why are serious mistakes still being made?

Why, under this revised system, was Ann Bennett so readily turned down for Continuing Care at a time when her own consultant had informed her health trust that she needed a lot of physical nursing?

And why are other families still finding the service so impenetrable?

It took Freda Douthwaite, from Stratford, three months to make an application for her husband Michael, 72, who suffers from Lewy Body dementia.

"No-one seemed to know who was responsible,'' says Freda "not the social worker, the nurses, not even the GP''.

Then, at the critical assessment stage, a six-month-old social care report was submitted, even though Freda had pointed out that Michael's condition had changed significantly in the intervening period.

But it was the rather inglorious manner in which the NHS eventually turned down the Douthwaites' application that should cause the Government greatest concern.

Real dilemma

Even though a decision was made on Michael's case on April 20, the South Warwickshire PCT left it until May 17 to inform the family (and even, then, they declined to give detailed reasons to explain why Michael hadn't qualified).

For a month, Freda had waited, desperate for news on a matter that was of fundamental importance to her and her husband's life.

Distraught, she asked her daughter to help launch an appeal. Again, like Peter Bennett, it was only then that the health trust awarded the family a better care package.

So why are people still being made to fight so hard for this care? Stephen Ladyman's answer is disarming in its candour.

"It's an expensive package of care", he says (an estimated 50,000 per person per year). "So it is about money?" I ask. "It is about money", he replies.

And therein lies a very real dilemma for all of us, not just the Government.

Because, with an growing elderly population, demand for this care will increase at an alarming rate (the number of dementia cases in Britain is projected to double by 2051).

We face a stark choice. Are we prepared to pay for people such as Ann Bennett to have the comfortable and dignified end which we would all want for ourselves?

Or will we have to accept, like her husband, Peter, that only those who fight the hardest for that care have any chance of getting it?

Panorama: Fighting for care will be broadcast on BBC One on Sunday, 18 July 2004 at 22:15 BST

SEE ALSO:
Fighting for care
12 Jul 04 |  Panorama
Continuing Care Q&A
16 Jul 04 |  Panorama
Where is your SHA?
18 Jul 04 |  Panorama
The couples
18 Jul 04 |  Panorama
Your comments
16 Jul 04 |  Panorama


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