Dominic Lawson: Carers deserve better than this diversion of their money

There are so many government initiatives that it is depressingly easy to imagine how this one got forgotten

Tuesday 09 March 2010 01:00 GMT

Governments usually end up believing their own PR, thus convincing the electorate that they are mad and therefore must be removed from office. This one believed it from the outset: one of the main distinguishing characteristics of New Labour was that it thought announcing something was the same thing as doing it.

So, for example, in 2008 the health minister, Ivan Lewis, made what he termed "an historic announcement": carers – those looking after ailing or disabled family members at home – would receive respite breaks funded by the NHS equivalent to £50m a year. This was a tiny amount by the standards of the NHS Budget of over £100bn a year, but would have enabled – according to the Government's own claims – 173,500 carers an annual week's holiday.

Bear in mind that many such people have not had a single week's holiday, paid or unpaid, in years: they have devoted every waking hour of their lives (and they get precious little sleep) to the care of a parent with dementia, or a severely disabled child.

It now turns out that this 'historic' announcement by Mr Lewis – who has since been moved on – was not honoured. Exasperated by the way in which the promised respite for carers had not materialised, two charities in this field – the Princess Royal Trust for Carers and Crossroads Care – put in a request for the data on such spending under the Freedom of Information Act. The NHS trusts which complied with the FOI request disclosed that barely 20 per cent of the funds promised had actually been released.

The money had been spent, all right, but not on respite for carers. We have no idea exactly how it was spent, since the sums were not, to use the jargon of public health expenditure, "ring-fenced". For all we know, it went on yet more glossy documents telling the public how much its local NHS Trust was doing to improve services. On BBC Radio 4's Today programme a man introduced as the "Director of the Primary Care Trust Network in the NHS Confederation" brusquely explained that his members were not legally obliged to allocate the money in the way the Government had announced it would be spent, and that in any case they knew best where the local healthcare need was greatest.

Since every political party – even Labour – now seems to agree that the days are over of Whitehall deciding where every NHS pound should be spent, this gentleman's cockiness was understandable.

There are two problems with his attitude, however, aside from being intrinsically irritating. First, we know the NHS now has one manager for every four beds, compared with one every twelve beds in 1997: in other words, we do not have an elevated view of the ability of NHS managers to maximise the benefit to patients of the money they are allocated. Second, there was a promise made to the nation's 6 million carers, and it is, I would have thought, unwise as well as immoral to break such a promise to so many people.

It might be that a large proportion of these NHS managers were not even aware that any such promise had been made in the first place. Gordon Conochie, of the Princess Royal Trust for Carers, told the same programme that when they complained about this matter with the various Trusts, "many of them didn't even know" why this addition had been made to their budgets.

This might seem incredible, but anyone who has studied the way in which the NHS is run will not be surprised. There are so many hundreds of government initiatives that it is depressingly easy to imagine how this one just got forgotten, especially as it was not included in the myriad of mandatory targets which are imposed on the various Trusts.

As a result of a BBC television programme she presented last year about the lack of support given to carers of disabled children, my wife has been inundated with letters from people desperate – and desperately angry – at the way in which their pleas have been ignored.

One such letter was from a woman in West Sussex, Susan Ajax-Lewis, sent on January 7th to the chief executive of the West Sussex Primary Care Trust, a Mr John Wilderspin. In it she points out that West Sussex had been allocated £732,595 by the Government to fund respite for carers (such as herself), but notes "On your own figures for this year NHS West Sussex has so far agreed to contribute to two schemes in Worthing, jointly totalling £15,590 and to support a dementia carers' budget in Crawley totalling £35,000. So out of the available £732,595 NHS West Sussex has so far committed a total of 7 per cent...Can you not see how risible is this figure. Are you not ashamed to see it in print?

"While you are looking at schemes to 'free up carer grant monies' many of the 73,000 carers for whom you are responsible are having to cope daily 24/7 for weeks on end, without a day off, in quiet despair and the kind of stresses that are completely unknown to people like you in well-cushioned employment with normal hours and days off."

I called Mrs Ajax-Lewis yesterday to find out what response she had received from Mr Wilderspin. The answer was that, two months on, she has had none. When I looked at the fantastically well-appointed website for NHS West Sussex, I was not surprised. It is one of the rules of thumb when dealing with modern corporations and bureaucracies that the more open and responsive they appear to be, the more difficult they seem to find it to deal informally with members of the public on a one-to-one basis.

Thus the West Sussex NHS website is full of links to friendly-sounding policy statements with names such as "Healthier People, Excellent Care", "High Quality Care for All", "New Horizons" and "Living Well with Dementia". There was also one called "Fit for the Future", but apparently it has just been scrapped after two years' gestation in interminable "stakeholder consultations".

It would probably take a Freedom of Information Act request to find out how much all these initiatives cost, but I'll bet that the £732,565 which was meant to go towards respite for West Sussex's carers was a fraction of that amount.

It is worth thinking about the plight of these people on a day when over a quarter of a million civil servants have gone on strike in protest at the Government's plans to cap, at no more than twice annual salary, redundancy payments for those earning over £30,000 a year: private sector workers would be grateful for such a guarantee. Yet, as Mrs Ajax-Adams points out, "you have to care for a minimum of 35 hours a week in order to qualify for the Carers' Allowance of £53.10, or £1.51 per hour. If you are under 16, or over 60, like me, you receive nothing."

You can point out that unlike NHS employees such people are acting purely out of love and family duty rather than as a career: but bear in mind that in so doing they are saving the state many billions of pounds a year, which it would otherwise need to pay for care in institutions.

In the end, a decision must be made: is the chief operating purpose of the NHS the need of those most dependent upon it for their health, both mental and physical? Or is it primarily run for the benefit of its employees?

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