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…


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.


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.


2 thoughts on “To Chris and Jayne

  1. Pingback: To Chris and Jayne | george rook | Dementia survivor, so far…..

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