Last month I accompanied Stewart, a member of York Minds and Voices, at the request of the local NHS clinical networks (I think) at a day’s event. This was designed to give local CCGs and relevant stakeholders in dementia care – mostly Health – a gentle kick up the backside to increase the diagnosis rates of dementia.
The entire UK list of CCGs in the UK in bar chart form, presented on unintelligible and illegible PowerPoint slide after unintelligible and illegible PowerPoint slide, confirmed the need for this.
I’d been asked to come and present a ‘patient or carer’ perspective to reinforce the message that it is important to get a diagnosis. I couldn’t believe there was still a need for this. Then I thought about two (probably of many) reasons why there might be some reluctance to diagnose, despite the unequivocal position statements of the major dementia charities.
Firstly, recently I was fortunate enough to interview the wonderful John Killick. He told me how he still saw receipt of a diagnosis as a potentially double-edged sword. He expanded his point. We always hear the mantra ‘once you’ve met one person with dementia, you’ve met one person with dementia,’ yet this principle goes out of the window at diagnosis. John says we need to provide personalised diagnoses.
Secondly, there are too many people coming off the diagnostic conveyor belt for overstretched teams who are tied up spending a lot of time measuring deficit. Third sector groups fare little better. They are making first contact, giving info on driving, powers of attorney and trying to get the benefits started – and then only able to check up around that six month time again. People with dementia are offered hit-and-miss Cognitive Stimulation and tired outdated ‘usual suspects’ of service – all stuff created by others.
The answer to that though is not to not diagnose, but to revisit how we operate; to frontload our response around the time of diagnosis; and to offer practical responses that are drawn from, and match the experience and expectations of, people living with dementia. Why do people have to wait for a diagnosis despite the presence of an obvious cognitive impairment? Certainly in Wales the ‘working diagnosis’ is advocated in the national plan.
I’ve never met anyone with dementia saying ‘I could do with a bit of stimulation now that I’ve been diagnosed’. In our brief ‘chat show’ style interview, Stewart instead mentioned the massive impact of receiving a diagnosis; and the many questions he was left with about the implications of it, his future, his mortality and his relationships.
We showed our five- minute film of the ‘Good Life with Dementia’ programme (http://bit.ly/2xHNpsv ) which was created and delivered by Minds and Voices members themselves. It covered all those questions and more. Who better to learn from than from peers who have been through the same experience, at a pace and in a place that is safe, comfortable and non-judgemental?
We went down well, finishing on a rallying cry to up their diagnosis levels, and to equip their own staff to populate a post-diagnostic pathway with practical stuff that matches the agenda of people living with dementia. Hopefully we helped remind people as to why they were there and offered a model that can be replicated elsewhere.
Stewart and I stayed until the next break (they had nice pastries). What followed was simply baffling. More unintelligible slides, long words and graphs. I gathered something about a new NHS ‘how to’ guide. Clearly a great deal of work had gone into all this information, none of which was understandable to people living with dementia. We saw countless screenshots of pages of this resource up on the screen. Stewart looked quizzically over at me and the sweeping gesture of his hand indicated it had all gone over his head. I read his lips: ‘It’s all gobbledygook’.
If it cannot be explained and presented simply in plain English to the person this is all aimed at, it is doomed to fail. ‘It’s not because you’ve got dementia, Stewart, that you don’t understand that!’ I said.
Stewart says, ‘They don’t understand what we’re thinking and we don’t understand what they’re thinking’ – not a particularly good starting point!
I was left with the sense that some people there had lost sight of what is essential, almost trying to make rocket science out of it all. It’s time to listen to and properly respond to the needs, questions and experiences of people living with dementia. ‘Just ask us!’ is something I hear frequently at engagement events.
We did that, and co-created the Good Life with Dementia course. You can too – then the diagnosis figures will look after themselves.
However, part of me fears that, long after Stewart and I had left with our pain-aux-raisins and maple and pecan slices, our input had been lost amongst the gobbledygook.
Here is a link to a great blog by my colleague, Steve Milton, giving a more in-depth look at the need for Crystal Clear language.
Damian Murphy
Co-Director, Innovations in Dementia
