Seek first to understand, then to be understood

I joined a group of GPs in Birmingham recently for an afternoon CPD Training in Dementia.

What a lovely group of people who made me very welcome.

I spoke about my own early symptoms and diagnosis, and then about what matters now, and what is available as support. They said I told them things they had never fully realised before, mainly that it’s about more than memory.

I showed them the new Young Dementia UK diagnosis tool for young onset dementia. Not one of them had heard about this. They were very interested.

During the afternoon there were many comments about the lack of post diagnosis support for people living with dementia. There were still elements of the old “what’s the point of diagnosis if there’s no treatment, cure or Support?” But it was said from frustration that support was not being provided.

They felt they might be raising expectations that once you have a diagnosis something will be provided to help you live with it. And it isn’t.

I made the point about preparing for a time when you might lose capacity. And doing things you might have been putting off. And the sheer relief that many feel when they understand why they have been feeling as they have for several years.

So I think and hope that this group of 25 GPs left with better understanding of what matters to us, and a fuller picture of all the possible symptoms.

But there is a massive irony in all this. and it seems to be lost on them.

Clinical Commissioning Groups choose what healthcare to provide in their areas. They commission services, from nhs providers, private providers, voluntary providers.

And who are the commissioners?

GPs.

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The wonderful Lansley reforms eight years ago put GPs in charge of choosing what services should be provided in their local areas. Because they know best.

I remember being told time and again that the CCG was a “member organisation”. I questioned this time and again too. What does it mean?

The answer was that all GPs in the area (for example Shropshire) were effectively the CCG. Everyone had a direct say and involvement in choosing and controlling services.

Of course, most didn’t want this.

And a curious thing happened. GPs who joined the CCG board gradually changed. They morphed into traditional commissioners. They lost what made them local and special.

They had to play the NHS organisational game, to their central rules.

So when I hear a roomful of GPs decrying the lack of commissioned support for people post diagnosis, I think…

Nothing has changed, has it?

Local decision making to central rules means…

Nothing.

I’ll tell you who knows what is needed locally.

The people with the disease.

The people living with dementia.

But they don’t ask us, do they!

We’ve got the evidence. We can provide it, because we’ve looked for it. The proof that the benefits are measurable and hugely outweigh the costs. Savings everywhere.

That’s why I’m working, along with many others around the country, to establish real, trusted engagement between people living with dementia and providers and commissioners.

Not the usual, formal, across the table challenging. Or brief breathless meetings which start with ‘I’ve only got ten minutes…”.

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No. Let’s sit down over lunch. Let’s chat. Let’s hear each other. Listen to our concerns and aspirations on both sides.

In fact, remove the “sides” barriers.

We’re in this together for the same reasons.

“Seek first to understand, then to be understood.”

“Win – win solutions.”

Stephen Covey was absolutely right.

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Self Managing dementia…the perfect oxymoron

Just picked up this up in a tweet, so here are my thoughts.

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I don’t live alone…I live with my wife.

Diagnosed four years ago age 62.

I have mixed dementia.

Self management… now, I don’t like this term, or approach. Supported self management yes.

Self management is being left to get on with life on your own. But we’re all at different levels of activation and education and living conditions, so most or all of us cannot manage our condition(s) “properly”, ie in accordance with medical guidance. If each of us could follow the guidance on life style, diet, activity, we would most of us not have the conditions we now have. That doesn’t mean we are reprobates and incapable of living reasonable healthy lives. It means we’re human. And we have experiences and feelings that control how we behave.

I believe each of us needs occasional support to help us live more healthy lives…ie to self manage. It’s Public Health really. Except it isn’t!

As a diabetic I don’t receive the help I need to keep to a perfectly healthy diet, so I use pills to maintain blood sugar, and I occasionally eat a biscuit or crumpet and jam. Like last night. Because I lose the will not to! It’ll be insulin next.

Can we self manage dementia? What does it mean? Given there’s no cure it must be about activity, social engagement, diet, alcohol and smoking…do we add going to bed at 8 because we’re so tired? What do we do on days when we’re completely in a hole? Self management is just saying go away and get on with it.

(Yesterday I was told that research shows that one glass of wine and one cigarette a day reduces the risk of developing dementia!)

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So supported self management is what we need. Through dementia navigators or companions, or admiral nurses when we hit crisis, and through peer groups where we support each other.

What do health professionals say to me? Don’t take risks. Do less. Don’t get tired (!). My GP doesn’t have time to discuss with me my life with dementia, unless I have a specific related issue.

And when people get further on into dementia how can they self manage anyway? I may not be able to make a cup of tea or put my shoes on. What happens then?

Self management is just saying to us, go and get on with your lives as best you can. Here’s what you ought to do, now do it if you choose. So we have a choice as a society. We either regard brain disease with dementia as something that happens, tough and all that, but it’s … life. Or we say actually, just like if you have cancer or diabetes, or glaucoma, we’re going to help you get through it, and if it’s terminal we’ll help you as you approach your death to be pain free and to have around you whatever makes you comfortable and loved.

I think you know which I’d go for.

Finally, yes of course I self manage. It’s called living as best I can. My wife helps me in some very practical ways, like looking after clothes washing and cleaning, since I just forget to do this. And she is a listening ear when I need one. But broadly I keep it inside because no one wants to hear my negative thoughts, and I don’t really want to think them either.

I am in control of my life. As long as I ignore the risk averse nay sayers. But it often is becoming a fight to keep going. It’s not just Dementia…for me it’s the other conditions I have, on top of Dementia. It all wears me out. And I have no professional support for that. Clinical appointments are short, sharp and transactional. And no one speaks to the others. So it’s like bouncing from one corner of the boxing ring to another. Waiting for the next hit to get me.

Self managing dementia?

It’s the perfect oxymoron.

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Do we have any?

A few weeks ago I wrote about what I hate about organised activity groups. And I got a lot of responses from people who agreed. We really don’t like being organised to do things we don’t individually choose.

But, and there’s always a but, everyone enjoys different things, so while I might not enjoy singing songs I’ve not heard of with people I’ve never met before, around a small table, at least one person at that group did.

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And I talked this week to a couple of PLWDs at our Market Drayton DEEP group who really enjoy “singing for the brain”sessions. They’ve both sung in church all their lives and they love being in a lively, cheerful choir. And of course they know just what they are choosing to do when they go.

This comes back to dementia friendly activities and groups and communities. The best things that keep people engaged in their communities, and going out and engaging, are what people have always enjoyed doing. Not usually activities organised for people living with dementia by someone who doesn’t have dementia. They think they’re doing the right thing of course, but…

So I returned to the local group I went mad over last month and had a really nice couple of hours. There were two of us living with dementia, one partner, and one younger guy who had heard of the group and wanted to talk about symptoms that a relative might be showing. As soon as we got onto talking about living with dementia it became really interesting snd personal. We were no longer trying to be pleasant and think of things to talk about with strangers. We had common ground, common cause.

It became what I would call a good support group, allowing us to share our thoughts, our feelings and our difficulties. How do you meet people when you’ve recently moved to a new area? What do you do if you think a relative might be showing signs of dementia? What’s it like feeling isolated?

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And at the Market Drayton group we talked about how difficult it is to meet people who don’t know you when you know you can’t keep a conversation going as they expect. That’s one of the big reasons for social isolation. I feel it too. When you can’t keep up with a conversation, and you get stuck finding a word or thought, there’s a long pause…a lot of long pauses…and others can start to wonder what’s going on. And get embarrassed. You can’t have the casual easy conversations of the past, beyond the predictable, well remembered phrases.

It takes time, and hard thought, to talk to people you don’t know well. And to listen to more than one person speaking at the same time. So we opt out.

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I can do focused meetings, when I have prepared, I know the background, the terminology, and it’s on my terms. I can’t do the others. So parties and most restaurant meals are out. One of my strategies is to sit at the end of a table so I can be quiet, observe, and not feel embarrassed and lost.

We talked about driving. Two of us are going through the DVLA renewal process at the moment. I’ve had to complete about ten forms, with more coming in by post as they wade through my various diseases, many of which might…might…have an impact.

When do you decide to stop? Probably before they decide for you.

It’s when you have one near miss too many. When you can’t trust yourself to remember to take extra care, have that extra check. When you look in the mirror and see a car up your exhaust and you wonder where it came from. But it’s a huge step away from engagement and independence to stop driving. It’s what we all fear.

This coming week I’m going to the first meeting of a new group called PALZ, in Shrewsbury. PALZ stands for professionals with Alzheimers, and is the name of a number of groups in Australia. A local solicitor (for the elderly) has started this group here, and is aimed at providing more formal meetings for those people with Dementia who may have been used to formalities in their working lives. I have had several debates about what “professionals” covers, but basically it doesn’t matter. It’s just another, different style, group. It’ll suit some not others.

One commissioner here thinks it’s exclusive and cliquey. I don’t agree. I think that every group or activity suits different people. And the more groups we have the more people living with dementia will find something that’s they enjoy. What’s more, no one will be turned away! Everyone welcome. (It’s Tuesday 20th, 10.00 at the conference centre at Royal Shrewsbury Hospital.)

So my conclusion?

We need more and more peer groups. By stage not age.

I don’t care whether they are for ex-miners, or servicemen, or lawyers, or accountants, or housewives…labels are irrelevant.

Just please start up more groups.

It doesn’t have to take much or any money. Just time and commitment and willingness.

It’s what social prescribing should be all about. Keeping us all engaged in our communities. Avoiding loneliness and despair.

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And it’s what social and health commissioners should be commissioning. Cheap but hugely beneficial. Cost effective. Reducing GP visits, A&E attendance and admissions, drug use, and additional co-morbidities.

I understand that Alzheimers Society is withdrawing from organising groups like singing for the brain and support groups. They’re also withdrawing their staff support for Dementia Action Alliances. They may have good organisational reasons for this. But who is going to facilitate them in the future?

There are always people in communities who want to run groups and to take local action, but these are not enough. There is a time bomb of frail elderly ill health that social models of care can do much to alleviate. But we continue to spend on traditional health care models in acute hospitals. We need to radically redesign out of hospital care to provide the preventive social care and activity that keeps people independent for longer.

Leadership? Innovation? Change agents? Balls?

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Do we have any out there?