Telegraphing their lack of understanding

So GPs have finally said there’s no point in a person knowing what’s wrong with them.

Oh, yeah, I know you’ve got cancer but it’s a type we can’t cure, you’ll die in three months, so I won’t tell you. Then you won’t worry, your family will live in happy ignorance, and it’ll be a much better way to end your life.

Absolutely reasonable. Just flicking a switch.

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Click.

There. Goodbye. It’s over.

I know I’ll miss out on £50 for referring you for a full diagnosis. But it’ll save you loads of pointless visits to doctors, scans, chemo, counsellors, Macmillan nurses, our practice.

And we’ve got too much work now anyway.

No. Just go home as if nothing has happened.

Ignore your pain and discomfort.

Ignore your family, children, friends…just go on as usual.

And one day, well, you just won’t wake up.
….

Does this happen?

Of course not, because it’s cancer. And if you’ve got cancer heaven and earth will be moved to extend your life by a few weeks, control your pain, help you come to terms with knowing you’re dying.

If, on the other hand, you’re one of the 850,000 people living with dementia you might be told there’s no point in knowing about it, and there’s no support for you anyway, so go home, get on with your life, and stop asking questions I can’t answer.

And you’ll be one of the people who does not get symptom relief from medication.

You’ll be one of those who die without making a will.

You’ll become distressed and disorientated, perhaps in pain, but unable to tell anyone about it.

Your family will be driven to despair worrying about you, trying to care for you and continue their own lives, unable to rest or take a break, for fear of you going walkabout or leaving the gas on, or lying in your own mess of urine and faeces all night and day.
….

The GPs are right though. What’s the point of diagnosis without support and care after diagnosis?

What’s the point of diagnosing terminal cancer? You tell them they’re going to die, goodbye.

Well, no, you don’t. And that’s the point.

And nor should you tell them they’ve got dementia, goodbye.

So instead of lobbying against diagnosing dementia, GPs and everyone else should be shouting from the rooftops for more support after diagnosis.

Like I did at NHS Citizen last year.

(Where did that go?)

Make living better for people living with dementia, not worse.

It’s not sodding brain surgery.

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Key workers or dementia navigators.
Admiral nurses.
Shared, co-produced living plans.
The right information at the right time.
Peer group support.
Dementia friendly communities, surgeries, hospitals, care homes.

Come on, shout for what’s right.

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Don’t stop diagnosing.

Support people to live well afterwards.

To Chris and Jayne

There are days when you think you’re getting somewhere.

And then days when you know you’re not.

Days when people listen, enthuse, infect, chatter

And days when your head is in your hands, cradled, wondering, drifting…

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We all have them.

But when you’re paid for your time it’s sort of OK.

Part of the deal.

When it’s voluntary…no. It’s not the deal at all.

Which is why it’s so important to use volunteers wisely.

Oops…not “use”…

Work with, support, treat as partners, co-producers of what your organisation produces.

I’ve recently resigned from a CCG committee which is meant to be about patient and public engagement. Been on it for four years, from the off.

How many times have I thought…

You’ve got to be at the table if you want to have influence.

If everyone gave up how would change ever happen?

Just occasionally there seemed to be a sufficient chink of light at the tunnel end that made me go on.

But my time and strength are shortening, and I’ve lost hope in that organisation.

And in our health economy more widely.

Yes, we’re the one under NHSE special directions. Cos we can’t run a health system, can’t innovate, can’t do co-production, just CAN’T.

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So where shall I spend my time and energy?

Where I can feel it’s worthwhile and where change will happen.

Where people listen and act, share and work together, welcome ideas and want to make them happen.

For patients. For people living with dementia.

My message is…

Pick the people you want to work with.
Find the passionate and enthusiastic people who share what you believe in, and who get it.

The leaders at any and every level.

The rest may be nice, lovely people…but you’re wasting your time. And it doesn’t take long to work it out.

I’ve tried and tried, badgered, suggested, shared…but in the end nothing is changing.

I gave them too long. I really wanted to believe things could happen.

But I should have walked away sooner.

And you know what really confirms this?

The Chris Roberts panorama film about living with dementia.

Chris and Jayne have put huge effort, time and commitment into raising awareness for years.

And they have made a difference. A huge difference.

I mean, look at the social media coverage last week, the blogs and tweets…

They are inspiring.

So, Chris and Jayne, thank you for your inspiration.

Good luck.

And I too will do my bit to improve life for people affected by dementia while I can.

http://www.bbc.co.uk/iplayer/episode/b07dxmyh/panorama-living-with-dementia-chriss-story

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