When will we care?

Dementia is a Cinderella thing

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I was in a meeting the other day about improving dementia care in community hospitals and other community health services.

Who came?

One senior manager. One premises management staff. Two nurses. And four volunteers.

How many were invited? Probably twenty or more staff and managers from across many services.

What did we talk about?

Great things that volunteers and our two nurses are doing in two community hospitals. Really making a difference for patients and their carers.

Communication, reminiscence, memory corner, butterfly cafe, craft activities, flower arranging, scarecrow making, harvest festival…

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All down to the goodwill and determination of a few.

What about the other staff?

Oh, we haven’t got time to issue the This is Me leaflets.

If patients do have these they are often stuck away in notes.

No, we don’t use the butterflies on wristbands.

It takes volunteers up to six months to get reimbursed for payments for memory stuff, or ingredients for cakes. So people often give up asking.

Volunteers get little or no support or enthusiasm from staff for their work with patients. It’s a struggle to get permission to this or that.

And then we are told that the speech and language therapists are only commissioned to support and train in the neighbouring council area because our own CCG will not find them.

Need help with swallowing? Don’t live in Shropshire.

Need help with communicating with your loved one? Don’t live in Shropshire.

God help us. Change your post code.

In another forum I’m leading one of five work streams to design a new Dementia Care Model for the area. Great effort of co-production (could we shall it “working together”?).

We’ll be proposing a pathway/journey which will enable all people living with dementia and their carers and families to get the support they need when they need it.

Before crisis.

And as Chris Roberts said last month elsewhere, why on earth haven’t we got a national dementia care pathway? An entitlement for all.

Not dependent on a CCG to decide whether to fund it. Or even whether to have a model.

Like other care pathways, for stroke, for cancer, for diabetes…this is what everyone, anywhere, should get, if and when they need it.

Until we get that many of us will just live off the crumbs that are left behind by commissioners who can’t get their act together, who put dementia at the bottom of their list.

It’s not about money.

It’s about choices. Equity. Human rights.

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Dementia is far from a Cinderella thing to live with, but it’s certainly in Cinderella commissioning land.

Why do some care staff seem to regard dementia as not part of what they should be looking after, when a person comes into hospital with something else? Behaviours to be tolerated, controlled, hidden away, ignored if possible.

Oh no, we haven’t got time for that. We’ve got to fill in forms. Just sit there in the corridor where I can keep an eye on you.

No, stop shouting at me.

Sit down please.

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Don’t swear at me.

Where are you going? I’ll have to put you back in bed of you don’t sit still…

Yet there are many who really do get it. And I have seen fabulous caring, and I know of wonderful efforts and improvements being made locally.

But it shouldn’t be chance.

Getting good stroke treatment is no longer a lottery. It’s planned and evidence based.

Getting empathy and understanding care when you have cancer is the norm, almost universal.

But dementia?

Nope.

Not yet.

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