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If you say 'no decision about me without me' too much, it'll become meaningless

It seems to have become a ‘bomb proof mantra’.

No self-respecting policy wonk on the healthcare circuit can be seen without the words ‘no decision about me without me’ stitched into the lapel of their jackets.

But if you repeat something enough times, people will believe you.

Conversely, it might become meaningless.

It of course is motherhood and apple pie, and not an ethos which you could fundamentally disagree with. Normally, that is.

This current parliament saw parliament introduce section 75 of the Health and Social Care Act (2012), and its associated regulations. It was a significant departure from previous statutory instruments enacted under previous governments.

This current Government wish to demonstrate in flashing lights their commitment to ‘localism’. This plainly became very hollow when Jeremy Hunt saw fit to contest the Lewisham case in both the High Court and Court of Appeal, against the loud wishes of stakeholders, at taxpayers’ expense.

The NHS in England is still reeling from this catastrophic policy decision, touted by a number of high profile think tanks and their corporate masters. It gave rocket boosters to competitive tendering to the private sector.

In any market, there are winners and losers. For every winner, there’s a loser. There’s a finite amount of cake we are being told. So in this climate it is no wonder that providers, including social enterprises, wish to seek an unique selling point in marketing.

The slogan “no decision about me without me” happily trips off the tongue for the purpose. There is very hard for any reasonable person to argue against the design of research programmes and the service without the views of the end-users.

But this all depends on your precise definition of ‘involvement’. For example, I have been successfully living with two chronic long term conditions, physical disability and mental recovery from a severe alcohol dependence. But in this climate of ‘co-production’ and ‘distributed leadership’, and even shared decision-making, nobody has had the decency to ask me for my opinions about these services.

One can adopt the stance that it is up to me to make my views know, rather than be merely a passive recipient of a service. And of course I do make my views known in non-symbolic ways.

The fact is that patients are all too often liable to made into cannon fodder for other people’s purposes. This might to be to sell a product or service in dementia.

Or they could be used to promote how wonderful ‘community services’ are in a London borough, for the personal gain of those promoting them, but at the expense of shifting resources away from severely under-resourced secondary care hospital units.

And not all stakeholders can be correct, and have an equal say in strategy. Reams and reams and reams have been written on this in the field of ‘corporate social responsibility’. For example, some social enterprises have found real difficulty in rationalising the drive to maximising shareholder dividend with community value and outcomes, however so defined.

Freeman had an attempt at formulating his ‘stakeholder theory’, but there have been remarkably few successfully theories since, arguably.

And how corporates show responsibility (or rather “don’t behave badly”) has become a hotbed for corporate strategists. For example, Prof Michael Porter, a strategy Chair at the Harvard Business School, published a highly influential review with Mark Kramer on society and strategy.

Large charities – operating strategically in a corporate-like manner – can, it can be argued under this construct, be obtaining their “moral fitness to practise” by involving people they raise large funds for in their mission, whether that is for ‘friendly communities’, ‘care’ or ‘research’.

So the pen is indeed mightier than the sword. Like pornography though, I can recognise real involvement and empowerment when I see it.

Some people aspiring, rather than battling or fighting, to live with dementia do wish to have ownership and control their dreams.

But in this crazy world of ‘dyadic relationships’, and other similar convoluted terms, some persons with dementia for example have their own beliefs, concerns and their expectations. They are not joined at the hip to the carers.

“No decision without me about me” is one of the latest political catchphrases in relation to the health service, in our jurisdiction, and describes a vision of healthcare where the patient is – if not an equal partner – then certainly an active participant in treatment decisions.

In 2002 the independent Wanless report recommended that, in order to cope with rising demand and costs, the NHS should move to ensure that all patients were “fully engaged” in managing their health status and healthcare.

It has a laudable aim, but, like many of these slogans, is at real danger of trivialising what is a profoundly serious policy issue.

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  • Like Humpty Dumpty said – It means what I intend it to mean. What it means on the lips of ministers I have no idea. Perhaps they do?

    But as people with dementia increasingly develop narratives about their lives that engage with ideas about rights, “nothing about me without me” is as powerful an idea as it was for the people with physical disabilities who used it to reframe their own narrative all those years ago.

  • Yes: if the phrase is only used by people who really mean it.

  • Shibley – surely you are not suggesting that politicians hijack and parrot the language of empowerment for their own murky ends?

    So young and yet so cynical 🙂

  • “There’s a finite amount of cake we are being told,” and we are now seeing which companies pick the cherry off the top increasingly in our new health market economy which ‘patient choice’ is helping to cement. I completely agree with you. At my local CCG the participants are willing to listen to patent participation, but little seems to happen as a result. Language around patient empowerment and ‘nothing about me without me’ are being overused in sound bites at conferences in which the programme substance, ignores the mantra, and the people delivering the speech have publicly advocated not empowering patient rights in reality. PR spin is hard to criticise without sounding negative as it sounds good, but we need to, in order to see positive use of the language turn into productive reality. Hearing someone like Kate Granger speak, with genuine patient experience from different perspectives I hear straightforward language we trust, and there’s no need to frame it with lots of catchphrase. I suspect the ratio of ‘on message’ talk is directly proportional to lack of its implementation in reality. Not only as you say, does overuse risk trivialising what is a profoundly serious policy issue, it undermines our trust when the words are used appropriately.

    I looked at something similar specifically in relation to our records here recently: bit.ly/1olARfI

  • Another outstanding comment.
    Many thanks for your time.