Issue 11

FOUR NATIONAL APPROACHES TO DEMENTIA - NOT JUST ONE

By Professor June Andrews, Director of the Dementia Services Development Centre, University of Stirling

The UK being divided into four parts makes it a great laboratory for social experiment . We can observe what happens to a health and social care system that is roughly the same in four different health departments. I work in each of these systems, each with their own dementia strategy. My recent report on Welsh hospitals is an example.

There is muddle generated by the English Department of Health. An anomaly has them representing all of the different countries of the UK in EEC and WHO forums. Foreign health policy analysts get told what is happening in England, as if that is the UK position. Analysis reflected back from colleagues in the USA, or mainland Europe, therefore seems a little confused, or uses language inconsistent with the circumstances if 3 of the 4 countries .

Domestic media reporting of health issues has been improved generally since devolution. It helps now that the NHS in England is called “NHS England” rather than what it used to be called – it was just “the NHS”, and the Celtic fringe has local branding “NHS Scotland”, “NHS Wales” etc.

When the Prime Minister (“our” Prime Minister wherever we are in the UK, not the Prime Minister of England) issued something called “The Prime Minister’s Dementia Challenge” it turned out that it only applied to England. That ought to have been a little bit embarrassing, but clearly it wasn’t. It is interesting to reflect on that shamelessness when, as with dementia, we are dealing with a health issue where England is clearly lagging behind Scotland, Northern Ireland and possibly Wales.

Domestic media reporting of health issues has been improved generally since devolution.

For a really important proxy measure for how well anyone is managing dementia - the levels of diagnosis -NHS England, and the Department of Health has fudged some of the statistics with a bit of Wales and Northern Ireland thrown in to make their numbers look better. They sometimes miss Scotland because they use Alzheimer Society statistics, which don’t include Scotland, but are still boosted by top-of-the-class Northern Ireland. A good case in point was the Whitehall press release for the Dementia G7/8 summit of late 2013, which sent the rest of the world back home amazed at how well “we” are doing in dementia care. The impression given was that “we” were among the best in the developed world. When the Health Minister (of England) was proudly addressing the meeting, England wasn’t even the best in the UK!

Don’t think they were embracing the nation. Any opportunity to make negative NHS comparisons is pounced on by Whitehall. It’s a shame the Celts were too polite to reciprocate in front of the visitors.

That already false impression was inappropriately enhanced by comparing “us” now with the stats of the other developed countries as they were about four years before. But that was not enough. Alzheimer Society statistics were used to boost the numbers even more, because they pulled in non-England figures, making the situation look even better in the English “State of the Nation” report.

So what does it matter if England exaggerates how well it is doing? So what if the overseas people still mix up GB, UK, and England? So what if England plays on that?

Mostly it doesn’t matter, unless you feel it is important to work out what really makes a difference for people with dementia. Putting on a good front for the visitors is one thing. The problem comes when people believe their own spin. It’s a human laboratory so there should be ethics.

For example, a huge effort has gone into the Prime Minister’s challenge work on Dementia Friendly Communities, Dementia Friends, and Dementia Design in health care facilities. You can see the inputs. It’s a sad celebrity that can’t claim to be affected by dementia. It is a careless politician (even an opposition one) who is caught without his “Dementia Friend” badge. Unfortunately, though, the number of people who have their diagnosis in England (“real” England, that is -the one run by the Department of Health in Whitehall) is trailing behind the rest of the UK. Compare a 75% diagnosis rate in Belfast with 20% in some parts of London where I have been working recently. If we were open about this we’d say that the Prime Minister’s Challenge isn’t working.

…. I advised families and friends to take a more active role during the hospital admission of people with dementia, because hospital is such a dangerous place for them.

Some vociferous GPs question whether a diagnosis has value, and argue against making the effort. They think there is nothing they can offer – so what is the point? Even the (English health system ) offer of a £55 bonus for each diagnosis made them scoff.

This is what has brought on my “Aha!” moment. I used to spend ages telling GPs about all the things they could offer patients with dementia and their carers. Advice on nutrition and exercise, home modifications, legal steps to protect themselves, some possible medication, welfare and finance checks for carers… I could go on. “If you are lazy or busy,” I used to jest, “Just give them the phone number of Age UK, or the local equivalent and they will do all that for you.”

In my book “Dementia; the one stop guide” I give advice on how to cope with dementia. In addition I advised families and friends to take a more active role during the hospital admission of people with dementia, because hospital is such a dangerous place for them. This was seen in the Herald and other media as an attack on the NHS. Actually it was meant to help nurses and doctors in hospitals.

Diagnosis by GPs is meant to help the health system. It is time for the NHS to understand that it needs families to take a more active role. Of course health and social care can be a safety net for those without families, but we can no longer just ask what “the council” or “the NHS” is going to do for our ageing relatives. In Singapore, you can face jail or fines for not taking financial responsibility for your ageing parents. Can we be far behind? If I’m right, doctors need to start giving us as much information as possible. Hospitals need to start open visiting. This needs to be a compulsory topic at school. Because we are all going to be in it – not in a soft “friendly community” way – but a “Who’s going to pay for this and fix it?” way. The answer to that, I am afraid….. is you.

Professor June Andrews is Director of the Dementia Services Development Centre at the University of Stirling and blogs @ProfJuneAndrews

By Professor June Andrews, Director of the Dementia Services Development Centre, University of Stirling

Issue 11

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