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Map of the Week: Dementia

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Mark Easton | 17:08 UK time, Thursday, 14 January 2010

I wouldn't want to be suffering from dementia in Berkshire. According to my analysis of official NHS stats, health managers in the county spend just a few pennies per patient on drugs that might benefit dementia sufferers. In North Lancashire, by contrast, they spend 40 times as much.

I worry about losing my marbles. When I can't remember the name of someone I have known for years, or I walk upstairs only to get there and wonder what I went up for, or when my memory of great chunks of my past fades to nothing, I wonder what I will be like if I live to be 80 or 90. These "senior moments", as a friend of mine describes them, frighten me.

I am not alone. As our society ages, dementia is going to become increasingly common in Britain and in 2007 the government responded to anxiety about the range of diseases defined by the term, announcing it was to be a "national priority" for the NHS.

Graph showing projected increase in the number of people with late-onset dementia in the UK by age group

Now ministers are accused of reneging on that pledge with the National Audit Office arguing that dementia "has not been given the levers or urgency normally expected for such a priority".

The structure of the NHS in England is founded on the concept of devolved power - localism in action. Primary care trusts are given control of their budgets, to decide the priorities in their local area and be responsive to local people rather than national politicians.

When it comes to dementia, the NAO finds that "primary care trusts, who are responsible for prioritising funding under the devolved delivery system, do not see it as a 'must do'."

Why not? National politicians have made it crystal clear that they believe dementia should be a priority for local health services. And yet, the NAO report finds big variation between prescribing levels of anti-dementia drugs in different English regions "suggesting that people in some parts of the country who might benefit from the drugs are not receiving them".

Graph showing prescription of anti-dementia drugs in England

Only around a third of people with dementia are formally diagnosed which means that most sufferers miss out on early intervention and specialist care. What this map does is identify what the NAO calls the "diagnosis gap" in each region, then factor in current prevalence and its expected rate of increase, to see which parts of the country are failing to give the issue the priority the auditors clearly believe it deserves.

Map showing regional breakdown of the diagnosis gap challenge

The regional picture may camouflage the local experience however. For individual patients, diagnosis and access to drugs will be down to the local PCT and GPs, so I have had a look at local prescribing rates for the range of pills which are thought to work best at treating dementia.

Now, there is more to dementia services than simply drugs. There are many different types of the disease, of which Alzheimer's disease is the most common. Symptoms include a decline in memory, reasoning and communication skills, leading to an inability to perform everyday tasks and eventually a need for 24-hour care.

There is no cure and drugs that slow its progress do not benefit everyone, but they have their place and a look at the spending per patient in different parts of England may offer a clue as to the importance different care trusts place upon treatment.

dementia data

I created this table (full figures here [40 Kb Excel spreadsheet]) from figures obtained from the NHS Information Centre (thanks to them for their help). I used published figures on the spending on clinically approved dementia drugs by each PCT and divided the last year's expenditure by the number of people on each trust's list.

Obviously, some places will have a higher proportion of elderly people than others but the difference in expenditure on these drugs is startling and goes well beyond any demographic explanation.

In Berkshire West, with a population of just under half a million people, they spent £34,000 on prescriptions for dementia sufferers. In North Lancashire, with a population of around 340,000, they spent more than £1m.

Local health managers are not only failing to prescribe the right drugs for dementia patients, a recent independent report for the Department of Health [832KB PDF], found that GPs were prescribing the wrong drugs - leading to "an additional 1,800 deaths per year on top of those that would be expected in this frail population".

The research warned ministers that, contrary to clinical guidelines, GPs "are treating 180,000 people with dementia with anti-psychotic medication across the country per year".

What the NAO appears to be arguing for is greater centralised control over local managers. "Empowered local leadership is important for delivering transformational change" in dementia care, the report insists, but then argues that Whitehall "should find a way of ensuring that Primary Care Trusts commission sufficient memory services".

The auditors point to "the lack of strong levers for improving dementia care" with the "risk that NHS and social care delivery organisations will not give it the priority status expected". As I have argued before, the inevitable side-effect of localism is variation in service - the post-code lottery. Devolving power means reducing influence and control.

There are 'levers' that ministers use to encourage local NHS managers and GPs to take account of centrally agreed priorities and standards - the so-called "vital signs" indicators [560KB PDF].

Triangle diagram showing national priorities for department of health

At the top of the triangle are a small list of "must-dos" against which local trust managers are performance managed by the department centrally. Dementia is not one of those. Tier 2 includes activities where "concerted effort" is requested and there is a degree of regional accountability. Dementia is not one of those. Tier 3 includes a list of areas from which local managers can choose their own priorities. Dementia is not among the options.
A full list can be found here [500KB PDF].

So the NAO's argument (and, of course, those interest groups demanding more attention and resources be applied to the condition) is that if central government says something is a priority then they should do more to get local officials to do their bidding.

In this case, it appears that those people in Whitehall wanting dementia to get "must-do" status, didn't get their finger out in time. The NAO notes that the Department of Health decision to make dementia a national priority "was too late for inclusion in vital signs".

However, if you really believe in local power rather than central control, you might resent politicians in Whitehall picking out their priorities. Currently, the list of Tier 1 indicators relates to cancer, stroke, hospital acquired infections and access to services. But it could be argued that devolving power should mean trusting health officials locally to decide how those issues should be prioritised.

If the health chiefs in Berkshire don't think it is worth spending a fortune buying drugs for dementia sufferers then that is their prerogative. Equally, their counterparts in North Lancashire must have spent less on a competing health demand in order to find the £1m they thought necessary to spend on prescribed dementia treatments. Should someone in Whitehall tell them any different?

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