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6 March 2000

And who will wipe your bottom?

A year ago, a Royal Commission on old people reported. Ministers did not care for its recommendation

By Judy Hirst

From the outside, John Kennedy Lodge – with its mellow, honey-coloured brickwork and bright modern facade – does not look like an old people’s home. Inside too, the odours of old age, of incontinence and decay, are kept firmly in check.

This is bespoke, award-winning residential care, provided by a leading housing association in a run-down corner of Islington, north London; and at £431 a week, far above average fee levels, probably about as good as it gets. Each of the 37 frail, elderly residents, all in their eighties, has a room with an en-suite bathroom and kitchenette. They live in “clusters”, taking their meals and watching TV in a small communal area. Everything is shipshape, cheerily painted and orderly, with attentive staff who clearly give of their best to the vulnerable people in their care.

So why does the place feel so soulless, so sad? Look inside the rooms, and there are fragments of former lives: photos, favourite bits of furniture and memorabilia that have nowhere else to go. Mealtimes are quiet, largely solitary affairs, with most residents choosing to sit apart in the dining areas, often with a tray on their laps. The kitchenettes – designed to promote independence – are rarely used.

Many of these old people might prefer to be looked after in their own homes. Or maybe in sheltered accommodation, with round-the-clock support. But the British way of caring doesn’t work like that. Our system still has more in common with the Poor Law than with Care in the Community, and there are perverse financial incentives to encourage councils to institutionalise the old. It also penalises anyone with more than a few thousand pounds in assets, by making them pay for some or all of their care.

All right, you don’t want to think about it; but, sooner or later, on behalf of your parents, if not yourself, you will probably have to do so. It was to sort out this mess that the government set up, with some fanfare, its Royal Commission on Long-Term Care. It reported a year ago, and it prompted an intense debate. What has happened since? Goornish (nothing), according to one Jewish member of the commission.

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Chaired by the philosopher and theologian Sir Stewart Sutherland, it looked at the Byzantine funding arrangements that allow free NHS care to an elderly man with cancer, but impose means-tested charges on an Alzheimer’s patient being looked after by social services. It asked why the NHS refuses to pay for non-specialist care in nursing homes; and how a society in which one in six will eventually need long-term care, and one in four 85 year olds develop dementia, can expect to get away with spending so little.

The commission’s main recommendation was to make all long-term personal care – bathing, feeding and other hands-on assistance – free, whether delivered in an NHS or social services setting. “Hotel” or accommodation costs would continue to be means-tested. The extra cost to the Treasury was estimated at £1.1 billion a year. A “note of dissent” from two commissioners, David (now Lord) Lipsey and Joel Joffe, proposed a more modest £300 million subsidy to services, and a broader role for private finance.

All we have had since then is a pre-Christmas statement by the Health Secretary Alan Milburn, which cherry-picked a couple of uncontroversial proposals and announced a new round of consultations before a government response could be expected this summer. Why this delay?

Sutherland says there has been a systematic attempt to rubbish the commission’s recommendations. “There was a strong belief that we’d got it wrong, with discussions going on between government advisers and dissenting commissioners.” Still, he believes the length of time ministers have sat on the report shows they are finally appreciating the complexities involved. “What’s interesting is they have not come up with an alternative. In the early days of government, they were looking for a public-private partnership solution. Perhaps they’re realising that the public input will have to be larger than they first imagined. Now though, the government can’t delay any longer. The whole credibility of asking a Royal Commission for independent advice is on the line.”

Those on the inside track of the new round of consultations, however, say that Sutherland’s proposal for free personal care is dead in the water. Financing long-term care through increased general taxation (a “populist free-care-for-all panacea”, according to Lipsey) is not what the government wanted at all. Nor is the Treasury keen on the impact that providing personal care gratis might have on demand for home care services; especially when informal caring by relatives currently saves the Exchequer an estimated £40 billion a year.

Ministers may not have announced an alternative yet, but they are certainly looking for one. One option being actively explored is encouraging more people to insure privately against care costs. The Conservatives’ partnership plan for long-term care insurance was treated dismissively by Labour when in opposition. Now though, the government has sent out clear signals that PPP, CGU, NatWest and the rest are back on board.

At premiums of at least £1,000 a year for a 65 year old, long-term care insurance is clearly a niche market. But insurers are bullish about selling cheaper policies if the government helps pool the risk: perhaps through “stop loss” arrangements that commit people to full finance for their first few years in long-term care, after which the state picks up the tab.

The present £16,000 limit on what you can own before paying for all your care is hugely unpopular with the electorate. Not just with pensioners who genuinely thought Beveridge’s welfare state would see them through to the grave. But also with middle-aged Middle England, which, as Granny and Grandad survive ever longer, is watching its inheritance being eaten up in care costs. For this purpose, 40,000 homes are sold each year.

The government intends some tinkering with capital limits and means-testing thresholds, probably as a pre-election sweetener. But early research findings indicate that the impact for individuals will be negligible without other reforms, particularly to how – and whether – services are charged for. Homecare charges, for example, range from zero to £85 for 12 hours’ help, depending on where you live.

Department of Health officials give the impression that these are desperately difficult questions, involving a host of complex definitional problems. But really, what’s to define? As the discussions meander on, the suspicion is not so much that the government will do nothing about long-term care; but that, as in so many areas of welfare reform, it will increasingly be down to the individual – whether as a carer or self-financer – to provide. The government’s own Audit Commission says as much, in a new report on older people’s services, where it observes that the Royal Commission’s recommendation on free personal care runs counter to government policy on promoting personal responsibility – through stakeholder pensions, for example.

Many practitioners who work with elderly people are deeply disappointed and repelled by the turn the debate has taken. They see grotesque cases like the 96-year-old woman recently evicted from her Kent nursing home to a cheaper one with no room of her own, because social services could no longer cover her fees; the endless wrangles between health and social services over who should pay for what; the confused elderly people wondering why yet another professional is making yet another assessment of their all too obvious needs.

“You don’t generally need personal care – someone to tie your shoelaces or help wipe your bottom – unless and until your health breaks down,” says Stephen Webster, consultant in elderly medicine at Addenbrooke’s Hospital, Cambridgeshire. Separating the funding of personal and nursing care is both arbitrary and inhumane, he says. “It’s disgraceful that the government has not acted on the Royal Commission’s recommendations, to make both a clear NHS responsibility.”

The tortuous definitions mean nothing to women like 87-year-old Dorothy Greenshields, a new resident at John Kennedy Lodge. She didn’t want to end up in a home. “The physio said I wasn’t ready for one. She meant mentally, I suppose.” Mrs Greenshields sits tall and upright in her wheelchair, still strikingly handsome and alert. But she is crippled with osteo-arthritis. She needs medication, and a hoist, and help to get to the bathroom. An independent woman, who has brought up four children and is used to doing everything for herself, she is grateful to be in a decent place. But she hates the indignity of it all.

Mrs Greenshields needs medical attention. She needs personal care. Above all, she needs something it will be hard to hang onto: her sense of identity, of self. Despite the arts and crafts groups and the reminiscence sessions, her “home for life” can never be more than the sum of its parts. Residential care may be right for some, but for Mrs Greenshields and thousands of others, other options need to be available: intensive domiciliary services; “extra” care in very sheltered accommodation; home-from-hospital schemes that stop frail, elderly patients getting bounced back to A&E.

Health ministers know how to press all the right buttons on these issues, talking eloquently about rehabilitation, prevention, quality of life. Occasionally, they stump up a little money. But how can a government that baulks at spending an extra £1.1 billion – a mere 0.1 per cent of GDP – on easing the lives of its older citizens be trusted with bringing about the change in services that is required?