What matters to us?

So yesterday we had our monthly DEEP meeting in Shrewsbury. Just four of us, but a great opportunity to chat and joke and chew things over.


And one of the things we talked about was a group that meets bi-monthly in Shropshire and Telford to oversee the development of dementia care/support. A steering group. And on it, for the last three meetings, we have had three people living with dementia…including me. The rest of the group is professionals in health or social care working in the area.

A few months ago the group agreed that we should have more than just me representing people living with dementia, so I invited in two from our DEEP group. And they’re great. Keen to participate, keen to share their experiences, keen to say what matters to them.

Only trouble is, and I’ve found it elsewhere, the professionals don’t know how to include us.

Now I know the system, the NHS, and most of the people around the table. My two colleagues do not. And they cant think and decode and formulate ideas as quickly as the others.


Now DEEP has very good rules of engagement for these meetings where people living with dementia are involved. Speak slowly, be as visible as possible, be loud enough…don’t interrupt or speak across others…and use cards to signal you want to speak.

We didn’t do any of these! So guess what…my friends said nothing and didn’t understand half of what was said.

I would add, for fairness, that they were offered support from someone sitting beside them to explain things, although the meeting did not slow down during this. And there is a standing offer of an hour’s training and introduction before meetings. But this has not been taken up. They probably don’t remember! And I’m not sure that I’d want to give up another hour to be talked at about what is about to be talked about.

So what are we going to do about this?

Well, we talked about it yesterday and I found out just how strongly the other two really feel…like they’re there because a rule says they have to be there, like they’re ticking a box…like no one actually wants to hear them.


So I think next time we should start with the question “what matters to us?”

What matters to us in the meeting? What matters to us in our lives?

What do we want that is not there?

But we’ve already decided that.

DEEP groups matter to us.

We’re not far on in the disease, so what matters is the opportunity to talk to each other, without our family present, about how we feel, what we’ve done, how we cope with things…because the worst thing is losing your confidence to go on doing what you want to do. And to be you.

Caregivers often finish our sentences. Or choose a menu for us. Or answer questions before we can summon an answer. That saps confidence. It saps your being. It reduces you.

Being around other people at a similar stage is incredibly helpful. It recharges you.

But there are so few groups.

We need a group in every town. Where we set the agenda. Or probably don’t have an agenda!

It’s incredibly cheap to make these happen. But they need someone to organise them.

Easy win for retaining independence, community involvement, and living as well as we choose.

And probably delaying use of health and care services.

At the next meeting we’re going to make sure they ask us and listen to us. And that we set the agenda for our health care and support.


That way we will get the support we need, rather than what professionals want to give us…or endless apologies for not being able/willing to afford services.

Above all though, don’t invite us and ignore us. That really is insulting.

You don’t mean to insult us. You just don’t get it.


Something different…it’s about you!


When does fun(draising) spill over into sexual objectification and exploitation?

And what does objectification mean anyway?

Recently you may have read about the Chief Exec of a Shropshire NHS Trust refusing to accept £2,500 donations raised at an annual bed push in Ludlow. The reason? The men pushing the bed were dressed up in drag as nurses.

They were of course no ordinary nurses. They were pantomime nurses, yes with bra or lace or short skirts, etc. Silly wigs. Heavy makeup.


The CEO thinks this is demeaning to nurses. Local Shropshire people disagree (96% in a poll).

So I was minded to meditate on this. Or philosophise. Or something.

By the way, the money was to go towards an ECG marching in the community hospital, and the event has been help annually for twenty years.



Is dressing up as a pantomime nurse an insult? Or demeaning?

Is it demeaning of the person/role that is derided?

Is it implying a stereotyped sexual attitude?

Is it humiliating to the person/role that is portrayed?

Is it about suggesting that every person working in the nurse role portrayed dresses and behaves like the men in drag?

I think in this case the objection to men dressed as caricature nurses must be that they lead us to believe that all female nurses are like these portrayals? Unkempt, ragged and a little skimpily dressed, joke characters to be taken as jokes.

Well, if the sight of men dressed as caricature nurses makes you think all nurses are like these you probably already have an excessively warped and misguided view of female nurses. I don think a bit of drag fun isn’t going to warp you!


Is humour that uses stereotypes acceptable?

What about the mother-in-law jokes?

Or the chartered accountant Monty Python jokes?

(I admit that I was training when those jokes were around and they made me cringe with embarrassment. I was determined not to be boring and silly. Not sure if I succeeded.)

What about the carry on films, and the pantomime characters?

Perhaps you are demeaned if you feel demeaned? But lots of personal history and experiences go into how we react and feel about things we see and hear. So that’s highly subjective and unreliable as a test.

Does a man dressed as a woman demean the woman? (Or perhaps the man?)

I think one test is whether the portrayal is caricature or realistic?


If it is caricature, it is obvious and visible, and not subtle or subversive. Caricature is usually comic, and often designed to make a point, usually critical. It has one of two purposes…either to make you laugh or to make you question something.

If the portrayal is realistic, it may be designed to deceive you into doing or thinking something.

In other words, if it’s realistic how do you know if it’s true or false? If it’s caricature you know it’s not deceiving you because it’s obvious,

There are some cultural stereotype jokes in every society. They are frequently found in pantomime and stand up comedy. The buxom, bossy mother in law, bronzed medallion man, sexy nurses, officious traffic wardens, and many more.

Should we outlaw these as incorrect and unacceptably demeaning? Or laugh along?

Do these jokes make us behave adversely towards these stereotype roles in real life when we meet them? Perhaps occasionally.

Do the jokes make the people actually carrying out these roles feel upset or angry, and make them change how they dress and behave? Perhaps occasionally.

Should we therefore make use of stereotypes for humour unlawful?

That would stop legitimate ways of criticising the behaviour of politicians, businessmen and others through humour? Should we ban cartoons, novels and films that use caricature and humour to highlight and criticise?

I think not!

There will always be people who are offended by others, by jokes, by cartoons, by stories, by behaviours. Perhaps because they have raw personal experiences and feelings that are touched. Perhaps because the implicit criticism is a bit too close to them for comfort.

Fundraisers use lots of ways to attract attention and therefore money. Sitting in a bath of baked beans, having wet sponges thrown at your face, dressing up as clowns or… nurses?

Are drag artists insulting to women? I think not. You don’t have to like them or enjoy their acts. But if you feel insulted by them I think the problem is yours not theirs.

One last thing, is this offensive?


Find the point!


I think I’ve written before about surrounding yourself with people who are positive and make you feel good. And keeping away from negative, miserable rudery.


I’ve been a bit down for a few weeks, on and off. You might have guessed.

My various illnesses get me down at times. And then another chip comes away, usually a piece of tooth.

Yes. I was having an Indian. They left a bloody stone in an olive or something in the spicey stuff.

A quarter of a tooth broke off. Again.

Turns out to be £620 crown work needed.



I’ve spent thousands on recent years just keeping enough tooth and metal and porcelain in my mouth to be able to eat.

And it just adds to the growing and daily depressing list of things to put up with.

But, as a GP once said, what can’t be cured must be endured.

Yeah. Thanks for that. You may be right, but it doesn’t help a lot.

So, yes, it gets me down. And it probably gets you down too.

So I’ve been working slowly towards doing what we all should do.

A plan for living well. For coping. For making life worthwhile.

So the other day I sat down for an hour to start scribbling.

I’d taken Lupin for a nice gentle, warm walk around nearby fields.


Watched and photographed some ploughing. (They took the rape off last weekend.)

Let the dog run wildly around, leaving a dust cloud behind her. Racing pointlessly around after…who knows what?


Where, then, do I start?

What gives me real pleasure?
What stops me from doing these things?
What can I do to make it possible to do them?

What do I absolutely need to do?
What is inescapable?
And which do I actually have a choice about?

What do I want to do before I die or become incapable?
This year?
Next year?

What do I do that I don’t enjoy?
Why do I do these things?
What would happen if I stopped doing them?


So I’ve made a start.

The next stage is probably harder. Actually stopping doing some of the things.

Thus, for example…

What will I lose if I stop being Chair of the DAA?


What will I lose if I stop chairing the acute hospital patient panel?

And what will I gain, of course?

It’s a really intriguing position. Because I’m scared of being lonely and unneeded, and being at home thinking…if only…

But I need to do what gives me pleasure. And makes me get up in the morning with a smile of optimism.

I’m not going to share what I wrote down. That’s private.

But you should do this. And sort out what’s left of your life.

And enjoy it.

Life’s too short to be dull, to do things that drain your optimism, that make you depressed.

And that make you think…

What’s the point?