Now here’s a question: how are we to ascertain the ‘success’ of the World Dementia Council?

The work of the World Dementia Council is wide-ranging; it’s not just the aggressive pimping of innovations for dementia.

The four main areas of work are to be as follows.

Four main areas are being pursued in order to tackle the lack of effective treatment and sufficient funding to find a cure:

• Integrated development – Optimising the path of medicines from research through to market by reducing barriers & encouraging regulatory flexibility.
• Finance and incentives – Looking at ways to increase the relatively low investment in funding dementia innovation by exploring new types of funding product.
• Open science – Unleashing the potential of open science for sharing information and knowledge to accelerate progress in developing new treatments and care approaches, and avoiding wasteful duplication of effort.
• Public health/prevention – The Council is also beginning an evidence review into existing research on how risk factors such as diabetes and heart disease relate to dementia, as well as looking into public health messaging on lifestyle and prevention.

There are some occasions when it is blatantly unwise to reward failure. For example, one could argue that senior management of the NHS should not automatically command high salaries, if they are not doing the basic things well, such as listening to their junior staff in their decision making.

But the operational failures of the NHS have been eye watering. Data showed just under 90% of patients were seen within four hours in the seven days up to December 14 2014. Pressures in England’s A&E units have hit record levels, with the lowest percentage of patients seen within four hours since monitoring began in 2010. Major units particularly struggled, with just six out of 140 meeting the target to see 95% within four hours.

Earlier this year, it was reported that NHS organisations have run up a total deficit of nearly £500m in the first three months of this financial year, according to two reports from health sector watchdogs Monitor and the Trust Development Authority. Monitor reported that the NHS had come under “unprecedented pressure” from increased patient demand, at a time when they are still trying to make savings in response to the biggest squeeze on Government health spending in the health service’s history. The Foundation Trust sector, made up of 147 NHS organisations, including 83 acute hospitals, which have historically been more financially stable than the rest of the NHS, has gone into overall deficit for the first time.

One of the phenomena which the NHS seems to be learning from big business is the immorality of high executive pay. The High Pay Centre, a think tank, said shareholders were still backing high executive pay deals despite new powers to vote them down at annual meetings. The pay of the average FTSE 100 chief executive increased from £4.1m to £4.7m last year, said the report. The High Pay Centre’s report says that, without further action, trust in business will be damaged by the perception that an executive “elite” is reaping all the rewards from economic growth.

The famous Samuel Beckett adage is, “Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.” But if the current Government were to fail better over the NHS, they would be presiding over an unfathomable epidemic of A&E trolley queues. The adage also draws into sharp focus what ‘failure’ is for the NHS. Failure for an individual Doctor or nurse might be easier to define, in terms of patient safety. One could argue that the metric of overall whether the NHS and care are safe is too blunt, but a necessary component.

Success in health and care, one can broadly define, should not be measured clinically through the lens of shareholder dividend. And yet this is precisely what we appear to do for private providers of care homes. It has long been felt that the 1945 Attlee ‘post war settlement’ failed both the left and right. It failed the left as it led to growing marketisation and privatisation of public services, and it failed the right as true socialism planning and shared resources went flying out of the window.

Numerous recent governments have tried to triangulate their way out of this problem. But it is clear that this has introduced more new problems than the old problems it purported to solve. Take for example financial failure for failed market entities. In a health service that pretended to be safe, otherwise you would not de-prioritise clinical emergencies, you would be taking out of scope life or death situations. And yet successive recent governments have allowed a situation where a NHS hospital might be acting unlawfully if it received ‘state aid’.

There are also strata of how failure is ‘hidden’ in the modern health and care system. The cuts in social care have been staggering, with the current Government coming up with increasingly convoluted explanations of their vanity project ‘The Better Care Fund’ to explain away a social care system on its knees. A fundamental problem, for example, with not being entirely truthful about the quality of care, running it entirely under market forces, is that you cannot easily tell if a patient with mental health problems gets a ‘bum deal’ in clinical care? Even measuring suicides has not become an uncontroversial measure of lack of success of policy; even though reports of suicides of disabled citizens allegedly brought about in welfare reforms continue to emerge.

It is possibly true that the phrase is better suited to long term conditions in service provision.

Let’s think again about, “Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.”

Innovation, doing traditional things differently to achieve the same or better outcome, should not be the territory necessarily of any political ideology. And it is certainly true that you have to crack a few eggs to make an omelette; in other words, an innovator has to be prepared to put up with a few dead ducks before hitting upon a great idea.

So how do you measure the success of an innovator? This question does merit some scrutiny, as one might then consider whether the performance of a successful innovator ought to be ‘sustainable’. Or whether we should make do with an innovator who has ‘hit it lucky’? But here I feel that there are some fundamental misunderstandings about what innovations are. Innovations aren’t simply inventions. A lot of work has to be put into discovering whether an intended target audience can actually adopt an innovation or not; hence the absurdity of not having a person living well with dementia on the World Dementia Council.

How are we to tell whether the World Dementia Council is any good? For me, one measure is whether they include people they purport to be interested in. By this, I don’t include having a person living with dementia in attendance at a meeting, but a person living with dementia with a portfolio and programme to influence their work. Inevitably one person living well with dementia to represent the millions globally in the world will appear tokenistic, but we’re shockingly not even at that stage. There is no person living well with dementia who has been appointed yet as a regular member of the World Dementia Council, and I certainly don’t want to see this to be situation when Kate Swaffer and Dennis Gillings participate in the same session of the Alzheimer’s Disease International Conference next year.

You can see whether a health system is truly embracing integrated care by certain proxy phenomena arguably, such as whether there is a whole person care tariff incentive in place, whether data are shared, whether there is care coordination, whether there is an ethos of multidisciplinary teams, whether stakeholders embrace shared or distributed leadership, and so on.

You can see the extent to which science is ‘open’ by the degree to which results are shared, including those from drug trials which have been dead ducks; the question is whether Pharma will wish to share this information with the market, as this form of market signalling could be to the detriment of shareholder dividends, even if for the market good. Market forces again. Whenever I see somebody sleeping rough under Waterloo Bridge in London, like the late and great Tony Benn, I think of market forces.

But the one domain which is the most vague is measuring the efficacy of prevention strategies. This, however, could be clearer than the ‘target’ of having a drug cure for dementia by 2025. Forget the usual question about which of the hundred dementias they’re finding and funding a cure for? Nobody’s listening. La la la la la. How will be able to tell the actual prevention strategies are working? This is not asking the same question as whether Governments have in place got operations in place to promote prevention; such as Mediterannean diets or fitness clubs.

For those of certain political spectrum, the development of an illness or disease is due to a failure in responsibility by an individual. We have seen this argument reach torrential proportions in the backlash against the effects of obesity being construed as a disability. Some people are medically morbidly obese, so should they be tarred with same brush over criticism of ‘those fatties who eat too many cream cakes’? The current evidence that the non-modifiable risk factors for Alzheimer’s disease are quite substantial, so even if we somehow eradicated all risk certain individuals would still develop that type of dementia. However, it could well be that some forms of dementia are amenable to healthy living. And if so are those people who are developing certain types of dementia, e.g. vascular dementia, guilty of not trying harder?

2014 has seen the growth of the meme ‘healthy body healthy mind’ as the beneficial effects of diet (including cholesterol), blood pressure control or physical exercise have come to the fore in considering the vascular dementias. This whole discussion, though, potentially poses questions about what sort of health system we want. Parking aside the issue of whether we want a health system which views illness as a punishment for personal indiscretions, and therefore your access to treatment fundamentally dependent on society’s view of retribution, we could consider whether we want a health system where we pool our risk, or whether you are sealed to your insurance premium fate by your particular genetic make up? We keep on being told that the future of medicine in the NHS is through advances in DNA technology. We’ll all one day be able to access details of our genome, even if our local care home for Granny is up shit creek.

So where now for, “Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.”

Lessons do have to be learnt from catastrophes, whichever political term they happen to fall under, whether Harold Shipman or Mid Staffs. But there is a danger of making good policy out of extreme disasters (even if extreme disasters turn out to be ‘isolated events’). Likewise, the risks we take in developing innovations may be utterly dissonant with the need to minimise risk in the acute part of the service. But considering this question enables us to think about what sort of society we want? In the case of my interest, dementia, whether we want to have a World Dementia Council without a sitting member living well with dementia or whether we want to ‘blame’ people for developing dementia?