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Dementia friendly communities are more than the customer experience


For some reason, the terms ‘person experience’, ‘patient experience’ and ‘customer experience’ have become conflated to a rather unhelpful degree.

I would like to be careful how I say this, though, because we do know that bad customer experience does exist for people living with dementia and care partners, and guidance or standards can help.

Corporate marketing can give high street brands a helping hand with adding competitive advantage, by making them more ‘dementia friendly’, and in return these high street brands can give a bit of marketing for the charity in return.

This is, of course, not the time for cynicism. ‘Dementia friendly communities’ have also in a more recent configuration which emphasises a rights-based approach.

I’ve often felt that the rights-based approach gets confused with party A taking party B to court over matter C, but they are much more of a question of a rights consciousness. The PANEL principles were originally proposed to articulate this rights-based approach, and are summarised here.

PANEL stands for Participation, Accountability, Non-Discrimination and Equality, Empowerment and Legality.

I have seen with my own eyes the subtle, and indeed not-so subtle, discrimination of society towards people with dementia. This is disappointing as the Prime Minister Dementia Challenge was fist introduced five years ago.

I might be standing in a room with my mother, known to have a diagnosis of mixed Alzheimer’s and vascular dementia, and a third person can often completely ignore her because of her diagnosis.

For all the millions of ‘Dementia Friends’ which have been created, the question remains whether a genuine cultural shift in attitudes has existed. Various unknowns exist, including how bad things would have been if there had been no public awareness campaign for dementia.

A significant problem which pervades all the work looking at whether there is merit in the dementia friendly communities approach is knowing how much time to give the dementia friendly communities to ‘take effect’.

Participation is something which can be looked at directly. Democratic inclusion is a matter of principle, and it would be interesting to know how many people with dementia, including in care homes, are actively supported to vote. This might involve making reasonable adjustments for participating in the voting process.

Many of these aspects can be looked at also by looking at how many persons with dementia, now patients of the NHS, are able to secure a GP appointment in the festival of ringing up at 8 am when the GP opens. Many barriers might exist, such as being oriented to the time, remembering the GP number, recalling the purpose of the appointment, and so on.

The scale of ambition is also worth looking at. We could look at how many providers are providing NHS information in an accessible manner, but this is venturing into the area of competitive advantage, especially where providers in dementia services exist in a private market.

But what is interesting, with the problems in legal aid and access to justice aggravated from 2012 especially, is how many persons with dementia on receiving a diagnosis are able to secure a lasting power of attorney.

Again, we would expect a significant difference right now between communities which are ‘dementia friendly’ and those which are not.

So, in summary, I feel that the focus on customer experience in high street shops is a bit of a canard, and wider issues of access to health, access to justice,  access to health or participation in the democratic process should have been tangible benefits of ‘dementia friendly communities’ by now.



How talk of the Unions went very Pete Tong for David Cameron



At first, nobody knew what he was going on about. David Cameron appeared to have some weird pathological obsession with Len McCluskey of UNITE, like somebody who acts oddly around someone that find deeply attractive. It is of course a tried and tested weapon of the Conservative Party; the notion that the Unions have secret ‘beer and sandwiches’ in Number 10, and they periodically hold the country to ransom. And yet, the truth is that David Cameron is quite unable to party as if it is 1979. Cameron’s attempts to capture the atmosphere of a Nation at ease with itself was simply returned with derision, as no-one clapped for him, in contradistinction with other names, when a long list was read out at the Wimbledon Gall Ball this year. The ‘Cameron brand’ has, despite the best attempts at mitigation against re-toxification, been tarred with the corruption brush, in the perception of many, with the close relationship between News International, Andy Coulson and Rebekah Brooks. Cameron has kept reminding us he saved this country from the brink of bankruptcy, when the fact is the economy has done extremely badly in the last three years. This is all about the political process and the economy.

Conveniently enough for Ed Miliband, the political process and the economy constitute two thirds of Jon Cruddas’ extensive policy review for Labour (the third leg of this tripos being society.) Whilst Falkirk was bad, the public is not altogether pleased with the extensive lobbying which appeared to culminate in the Health and Social Care Act. Private US ‘not for profit’ “health maintenance organisations” appear to have infiltrated the language of senior health policy wonks, and yet the problems of trade unions in private healthcare providers have not gone unnoticed. The main problem for David Cameron is not many people actually object in principle to the idea of democratic representation through Unions, and as for the idea of groups of people ‘holding the country to ransom’, the effect of the 1 Trillion Pound bailing out of the investment backing sector is not a trivial one. Boris Johnson and others proudly continue to ‘defend the competitive advantage’ of the City, with the Serious Fraud Office visibly impotent to deal with alleged LIBOR  fraud offences in the City’s own back yard.

It is not so easy to argue that there should be a no special relationship between Labour and the Unions, as Labour historically was invented as the vehicle to represent working class citizens in parliament. Members of Unions can of course ‘opt in’ to any political party they wish, but why should they wish to have the protection of the Unions in the first place? David Cameron would be onto a winner if Unions were unpopular, but the unpalatable fact for him is that Union membership is actually on the increase. The protection of employment rights, with the Unions in a pivotal rôle to bargain for the rights of workers, has never become more relevant. With the eligible time period for unfair dismissal having gone up form one year’s continuous service to two years, and with the quantum of the unfair dismissal having gone down, there has never been a better time to protect the worker. The worker is of course part of the ‘One Nation’ economy that Ed Miliband wants, it is part of the notion that we all have something to contribute to society in One Nation, and the process of participation politically of members of Unions (not whole Unions) has been approved.

Unions matter because they can speak up for the living needs of workers, whether this is the national minimum wage, or the living wage which is widely predicted to form part of the 2015 Labour manifesto. Members of Unions are much more accountable than the private equity shareholders who have profited through the rent seeking opportunities of the Health and Social Care Act. Unions could also be pivotal in bridging the gulf between the most extremely well paid and the worst paid. By having members of Unions on the renumeration committees in public companies and private limited companies, there will not only be an apparent perception of participation of the workforce, but there will also be active participation of the workforce in decisions promoting the ‘success’ or profitability of a company. This has already been working well in Germany, and Ed Miliband and Lord Stewart Wood are already most familiar with this aspect.

To be honest, this was a ‘cheap shot’ for David Cameron and it was inevitable it would explode dramatically in Labour’s face. While the BBC’s Nick Robinson will wish to chuck water on frying oil, his case is weakened by Tony Blair’s remark that Ed Miliband has shown remarkable leadership; and we know how much ‘they’ love Tony Blair. As usual, Ed Miliband will be called ‘weak, weak, weak’, but fundamental to all this is that the “political class” grossly underestimate the level of insight which ordinary voters have. It does not matter how this is all packaged by the BBC any more. Labour members think the way the country has been run stinks. Even hardcore Conservative voters are finding it hard to learn to love Cameron any more. Cameron’s in deep shit. And he knows it.

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