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.