A response from Alistair Burns on the ‘Living Well’ debate…..

Yesterday I had a response from Alistair Burns. I had to read through my original email to find out why I emailed him and the origin of the thoughts! Ha! It stemmed from the conference I went to in Trowbridge last week and the comment I made in my blog about the need to revisit the language we use.

I questioned whether “Living Well’ was the right phrase now. From listening to so many people with dementia or those closest to them, I realised that this was having a negative effect on their well being. They didn’t feel they were ‘living as well’ as others.

This made me sad to think that we’d come up with a phrase, which seemed right at the time, but which now was having the opposite effect on many and making them feel inadequate. In turn this made me comment on the importance of revisiting language.

Alistair always uses the same slides about ‘Living Well’ and his replacement at the conference used them. During my speech, earlier in the morning, I’d spoken about the language debate, so I was surprised when the GP didn’t even comment on the need to debate the language…..or maybe I wasn’t surprised…….

Here’s a reminder of the blog for those interested:

https://whichmeamitoday.wordpress.com/2018/11/23/enhancing-lives-conference/

My fingers are rambling…….sorry…..

So I must have emailed Alistair, suggesting a need to revisit the slides on ‘Living Well’. I wasn’t expecting a response. I know he’s busy, he wasn’t there, so was surprised when an email popped into my inbox.

My initial reaction was one of disappointment. I felt deflated. Not sure why.

“I was pleased to read your blog. It is a good point about living well and of course, this is not my phrase but as you will remember, was the title of the original dementia strategy and I think the aspiration is still valid”

Well, obviously I don’t remember which was a tad disappointing word to use but one which is casually used by many so I’ll half forgive.

He went on to say:

“I guess an immediate reaction is “living as well as you can” risks appearing rather paternalistic and suggests that people should only be expected to live as well as they can within the resources that are available and, perhaps sets the bar too low. “

And this is the bit that I’d like to throw open to others. I don’t agree that it’s paternalistic and I don’t agree that it sets the bar too low. Just my opinion though.

The bar is set as low as it can possible be at the moment, as there are few consistent good post diagnostic services are on offer. To set the bar at the opposite end of the scale is good for a few but for many appears unachievable. But my main point is that it’s also unrealistic.

For me it’s about setting the right expectations. To give the impression that life with dementia is all good is far from realistic. It’s a bummer, no question about it. We must give hope to newly diagnosed but surely we must set realistic expectations as well otherwise people may have an unrealistic view of what may happen?

To ‘live well’ in my little opinion, implies a good life in all respects ….I have many good bits in my life but each day is dominated by the restrictions of dementia that I can’t avoid.

‘Living as well as you can’, for me, implies that there are ways, within your personal circumstances, to not let dementia become an obstacle when a solution may be possible.

I’ve got some respect for Alastair and he did say he would discuss with colleagues so we’ll see. Obviously to change a long term strategy is difficult but it could easily be referenced to in new slides. After all chagning some words on a document is nowhere near as difficult as living with dementia.

Well that’s my view anyway. Over to you to agree or disagree but it’s important to have the debate otherwise those in power will continue to use words for the wrong reason.

So it’s important to reconsider their meaning every now and then…

as I’m sure I’ve said before, the psychological effect of words should never be underestimated…..

I wish people with such influence could see the value of engaging on Twitter for a debate as Alistair could learn so much about opinions from here, albeit just from those on social media, which I respect is only a small percentage, but still an important percentage and a valuable resource.