As far as bandwagons go, ‘friendly communities’ take some beating.

There is a palpable momentum behind big charities politically endorsed to promote a ‘friendly community’, with champions and award ceremonies.

The official reason for ‘dementia friendly communities’ is actually unknown.

As part of David Cameron’s “Prime Minister’s Dementia Challenge”, the ‘dementia friends’ campaign suddenly emerged from the Alzheimer’s Society and Cabinet Office.

A few million pounds were pumped into it, including slick PR and advertising campaigns. The new incoming Coalition government promoted it, just shortly after the 2009 English dementia strategy.

The aim, we think, was to ‘raise awareness’ of dementia.

It was argued that the public understanding of dementia was poor, and such a campaign to improve people’s knowledge of dementia would help to combat the stigma. It was argued that dementia is the most feared condition in adulthood, and stigma could produce negative consequences such as loneliness.

Fine.

But we actually don’t know at the end of this lengthy experiment whether, on the whole, the public’s knowledge of the hundred or so dementias is any better, whether stigma has been reduced, or whether people are any less lonely.

The business cases for promoting all types of ‘friendly communities’ are broadly similar, even if the substrates may differ. For example, autism may be a neurodevelopmental condition; dementia is definitely neurodegenerative.

It may be more appropriate to want to achieve equality for people with dementia, but recognise diversity for people with autism?

But should we reducing individuals with unique identities into large masses or groups of people who are best described as ‘heterogeneous’ in form, anyway?

Of course, politicians and possibly charities don’t actually care.

Let’s get down to basics.

It is argued that there might be a better customer experience for people with dementia or autism in certain high street shops.

Dementia in McDonalds, but autism in Burger King? (This is a made-up pair of examples, by the way.)

The arguments have always been too flimsy for words. None of it really stands up, and it was inevitable that many people would get on the bandwagon to receive monies for the concept – somehow.

One only has to give it a few minutes’ thought to realise what the enormous problems with it are.

If your community is friendly to people with dementia, is it a requirement that people with dementia should declare themselves to have dementia?

Is it necessary that people should ‘out themselves’ for having a private diagnosis, even if you’re not a well known celebrity?

Or is a dementia friendly community a community which happens to be ‘friendly’ to a person with dementia?

Do we include care partners here? The person with dementia has to make no public declaration in entering a shop?

Is it, also, really the case that each political party should have a different condition such as autism or dementia to advocate a ‘friendly’ community for? One has to worry, surely, if different high street shops are promoting different conditions to be ‘friendly’ towards to secure competitive advantage?

It all seems to be following a remarkably consistent formula.

Autism-friendly communities have similar aims to dementia-friendly communities.

For example,

“We need more autism-friendly organisations across the UK. The Autism Friendly Award makes businesses more accessible and helps open up public spaces to autistic people and their families. Whether you’re a business trying to include more customers, or an autistic person trying to make the most of your community, our award can help.”

Autism, like dementia, has patient champions touring the conference circuit, and has social enterprises ‘giving them their voice’.

Somebody once told me – whenever you think of empowerment, ask yourself who is doing the empowering?

The promotion of different sets of guidelines for condition-friendliness possibly encourages one to think of what particular needs are unique to people with dementia or autism? However, it could also be the case that we become paralysed by analysis over what interview techniques or shopping environments might be particularly condition-friendly?

It might be that the development of ‘friendly communities’ produces a genuine approach of ethos and inclusivity.

Lyn Romeo, the Chief Social Worker, for example in discussing ‘autism friendly communities’ comments:

“As social workers, it is our privilege to make a positive impact in helping to promote the independence of others. Liverpool’s enlightened approach to the health and wellbeing of all its citizens echoes the values of our own profession and I look forward to finding out more on my next visit to this wonderful city.”

And actually does it make any difference to post-diagnostic care.

Robin Bush, CEO of “Autism together, notes that:

“But what about the Liverpool families waiting months for an autism diagnosis or post-diagnosis support? What about the lack of respite care for families in need or suitable accommodation for those on the spectrum able to live independently? And who decides when a city has become autism friendly?”

The latest incarnation of the post-diagnostic support guidance from the Department of Health and Social Care is full of the same empty promises which have populated English policy since 2012. There is no funding for a network of national care co-ordinators, by the way.

That was ditched when Labour lost the general election of 2015; prior to that Andy Burnham, now Mayor of Manchester, had advocated this for his ‘whole person care’.

As a supporter of the Alzheimer’s Society said recently, “How everything is changing but nothing has changed”

It could be that people are genuinely ‘friendly community”-ed out.

As written in the Spectator,

“We don’t need such tokenistic gestures, but that’s all we get because the issues we face can’t be solved so easily. By supporting such schemes, politicians are using my condition to score points. Andy Burnham actually appeared at an autism-friendly hustings before the Manchester mayoral election. That’s a nice photo opportunity, but is he willing to do the hard work that’s necessary to improve the lives of people with autism?”

It could be just that it’s a form of marketing, a vote winner, a mechanism to get a gong, a mechanism to get a grant awarded, a mechanism to distract from failures in social care or mental healthcare provision, a mechanism to drum up customers, and it’s nothing to do with inclusivity and accessibility at all.

But I would never be that cynical, would I?

 

@dr_shibley

 

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