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The Barker Commission is helpful, but regulatory capture is an obstacle for dementia



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I welcome the hard work from the Barker Commission at the King’s Fund taking yet another look at how the health and social care systems can be brought together.

I agree that the continuation of this would be to reinforce a somewhat historical relic, when the evidence in my own field dementia is that the silos of care are indeed unhelpful in our direction of travel.

Our direction of travel in dementia is to move away from someone somewhere prescribing an ‘anti-dementia drug’ such as a cholinesterase inhibitor which has a limited time window for its effect on symptoms in dementia (and no robust evidence for slowing disease progression).

And the direction of travel is to move towards to thinking how to improve the wellbeing of a person with dementia. A person with dementia only becomes a patient when he or she is ill, and the wish of the services I feel will be to try to look after a person long before he or she has a medical crisis.

Too often the debate about the fusion of health and social care system has been entrenched in the all important debate about merging a universal and means-tested system. I do not wish to deny that.

But on the other hand, it would, I am sure, for a dream to be realised that the National Health Service could look after the health of a citizen in a national way, rather than for the needs of a person to be ‘dealt with’ in a piecemeal, fragmented, way, where profit before people may be an overriding principle.

For me, personhood in medicine and social care is about understanding that person, the person’s past, present, and future, and in relation to the environment and community.

This means that there will need to be some retraining of the workforce and reconfiguration of the health and social care systems, but there should be intelligent kindness to a beleaguered workforce part of which has just had to cope with a £2 bn reorganisation through the Health and Social Care Act (2012).

Too often the focus for a person who has received a diagnosis of dementia is on the correct pill to prescribe.  But clearly this is not good enough.

I am told all the time that what people want is some idea about the nature of their condition, how it might progress, what adaptations to their home might be necessary, what benefits might be available, what legal advice they can get ahead of the crucial time when mental capacity is lost, how the community will help if at all (for example banks), or how the environment can help (good signage if people are prone to navigation problems).

I do not wish to take the wind out of the sails of the important, valuable work by my medical colleagues in thinking about what factors might prevent dementia (e.g. intense social networks, exercise, certain foods), nor the search for medications which can interfere with the progressive biology of the conditions.

But people living in the here and now wish a practical, joined up solution in health and social care system, where information is freely shared in a necessary and proportionate way, mitigating for risks of sharing of personal information.

There are a number of obstacles to making this happen, but there is no doubt for me that ‘parity of esteem’ is a crucial factor. We have got to get out of the mentality of thinking of mental health and social care as unimportant compared to medical care.

This is a longstanding problem in policy, and there has been important progress in this. However, if we are to go down the route of making each pound count in the current NHS spend, in the avoidance of extra taxes or copayments, we should be bold enough to think of whether an adapted phone with big buttons and redials is  more cost-effective than a pill for improving the quality of life of a person with early Alzheimer’s disease.

In the early stages of Alzheimer’s disease, the most common type of dementia worldwide, people living with dementia typically might experience problems particularly in short term memory and learning.

I think the regulatory capture of bodies such as NICE, and medical regulators, will help to perpetuate the medical approach to dementia.

But if we had unified regulators, including one which could directly compare the cost effectiveness of a pill with that, say, of advocacy advice, with a view to improving the outcome of a quality of life of that person, rather than the effect on two points on a memory screening instrument, this would be progress.

This will require political nerve, and leadership from people in the field. I hope all concerned are up for the challenge. But the Barker Commission is an useful start, I think.

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