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Meaningful change in dementia care is not just for #FabChangeDay … hopefully

I once toyed with the idea of doing the clinical part of my medical finals in Cambridge in 2001 in a White Del Monti suit. It seemed like a good idea at the time.

The reason I didn’t was because I thought that I might get marked down for being anti-establishment, arrogant, too disrespect to the patients, and ultimately ‘fail’.

Being an innovator is a high risk strategy, but means you can’t always conform. What I felt enormously frustrating about the NHS is how status and kudos comes with your position on the hierarchy ladder. I sometimes think that doing a Ph.D. as part of a medical degree is the worst thing you can do for your wellbeing, as one minute you’re presenting original results to an international conference, and the next you’re pushing a notes trolley and only speaking when spoken to.

It’s worth thinking why the NHS adopts this ‘normalcy’, and I think this intense feeling of shared values means that the stakes are high if you’re perceived in any way at all as a ‘trouble maker’. The NHS is not the only culprit – I found when applying to corporate law firms in the City years later, recruitment managers loved memes from their graduate prospects thrown back at them. Even the psychometric testing, often determining your eligibility for interview whatever your personal charm, is designed to squash thought diversity, or even dare I say it you as a person.

The thing is – we are all actually different. Think about how ill conceived the English eduction system is. We actively reward people who can do the most set piece problems in a defined time correctly. We don’t look at how the population at large can solve problems between them. We don’t encourage ‘neurodiversity’, and yet people should be praised for being able to different things.

Here’s the bit in the blogpost where I protest too much.

I am not into ‘social movements’ at all. I cynically tend to think of hashing campaigns as a manipulative marketing device, encouraging groupthink. At worst, I think they become an instrument for boosting certain people’s egos and ‘bottom line’ than the causes themselves.

I look at the repetition of terms such as ‘change leader’, ‘change catalyst’, ‘change maker’, repeatedly used across jurisdiction, and think far from encouraging people to break the mould the ‘change days’ identify who plays ball (and who doesn’t). Give the conference slot to the guy who can say the right things. Sure, change leaders are rare people within organisations, and not often the people who’ve bunged “CEO” on a description of their area of industry.

But I think I can spot people who put all they can into what they’re doing, as they’re genuinely motivated. Andy Tysoe, clinical nurse specialist in dementia at Countess of Chester, I am quite sure has faced torrential headwinds when trying to put the needs of people with dementia as persons first.

I am sure that he has had to be the David against the big Goliath of people who have the power and resources to dwarf his excellent innovative projects, such as making Dementia Friends appropriate for tier 1 education in an acute hospital setting.

I am sure that he raises eyebrows when he likes a person with dementia being forced to ‘think faster’ in the same way you might ask a person with lower limb physical disability to ‘run faster’.

It’s been often argued that you need to be an externality such as Uber to ‘disrupt’ an industry like the taxi industry (please note that this is not true disruption in the meaning of the term made famous by Prof Clay Christensen at Harvard).

But I think it’s great there’s somebody within the NHS who is on the same page as me. Andy and I are even meeting up at my book launch in Camden next year, to ‘celebrate’ my rather technocratic analysis of person-centred integrated dementia care.

It’s worth thinking why there was such cognitive dissonance when Helga Rohra, Chair of the European Working Group of People with Dementia, asked in public off the then Dementia Envoy Dennis Gillings ‘how will the cure for dementia in 2025 benefit me?’ Helga lives with dementia now in 2015.

This is because there is lack of trust by people with dementia in some of the initiatives led by Big Pharma on dementia. These accomplished individuals don’t wish to give up their identities to being ‘marketing fodder’.

On the other hand, if the NHS were changed around from being a fragmented illness fixing service to a national health and wellbeing service, where enhancing health of people was actively promoted whatever the care setting, this is a ‘social movement’ many people wth dementia might sign up to.

And Andy, believe me, is an authentic voice in that.

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