A seed of doubt…missed connections

Yesterday I went to a patient leaders event looking at how leaders can shape and bring about change in health care to improve patients’ experience of care.

I went with my own views of patient leaders as people who work with commissioners and providers, acute, community and primary to influence change to improve care for patients:
In how services are commissioned, eg through co-design to support self management
In how patients are worked with and not done to
And in developing shared decision making about their health care,
Among other things.

The room was buzzing when I arrived
After a good down to earth walk through Smethwick and Victoria park
Past grocers overflowing with wonderful vegetables that smelled fresh and inspiring.
(Don’t get that much where I live)
And traffic systems that were simple. Cars went the right way down roads!

I knew quite a few people, which was good.
So I thought this will be exciting.

The NHS England event got going.
It’s always difficult to get the first sense of direction, where people are looking,

After an hour I still couldn’t get my bearings.
No clarity in my mind about what patients leaders are and do.
Or how or what we were being asked to work on.

Many people had strong opinions, strongly voiced,
About stuff they were doing
About their experiences in life and health
About being talked down to about their patient leader work.

Some thought patient leaders are entrepreneurs
Who do things, who change things, who get on with it.

Some thought they are people who influence change at higher levels.

Some just get on with whatever they can do or influence.

And I could not work out what it is that NHS England want patient leaders to be.

The table activities were unfocused, so again I could not work out what we were doing.
Too much noise.
Too much cross talking.
Not enough listening.
Lack of clarity.

I was disappointed and left early.

Reflecting on this today
I wonder if my inability to follow the facilitators’ explanations,
And some participants’ contributions,
And to take a real part in discussion activities,
Was due to my dementia,
My inability to change my focus.

I have found this before, though it has been better since taking Donepezil.
I can think along one track, but find it hard to change
To accommodate unexpected ideas.
Curved balls.
Left field thinking.

If it comes from me I can of course follow it.

If it comes from out of nowhere it is hard to get my brain to recognise, understand and follow it.

But then, perhaps I was right all along.
Perhaps the facilitation was unclear.
Perhaps there is lack of clarity about patient leaders.
Perhaps it’s the use of the word “leader” that makes me uncomfortable.
Perhaps there were some people who were not leaders at all,
Who didn’t have listening and influencing skills,
But who are doing what they are determined to do to improve care (entrepreneurs).
And that’s a good thing too.

I think I wold prefer different labels, if we have to have any.
Some of us have leadership skills and qualities
But some are guerillas, revolutionaries, activists…

We are all change agents.

Let’s change the words so we understand what we are doing.
And our role in changing healthcare

I know my brain is not always spot on.
The other day at a meeting I said I could not remember receiving a report sent out two weeks earlier.
I checked, found it, read it, and remembered that I had indeed read it and had questions about it.

So, you see, my brain is letting me down a bit.

What is very difficult is to know when I am right and when I have lost the plot.
Mostly the former still I am sure.

But it’s the seed of doubt that is disturbing.
Those missed connections which leave you in a different room from everyone else.

And I suppose the result will be that I will stop going to unfamiliar meetings at some stage.

And then on the way home my train was a few minutes late so
I missed my connection.

But a big thank you to the lovely Arriva man at Shrewsbury station who got me a taxi and was all round a jolly nice man. He didn’t know I have dementia, but he did everything that anyone might expect in a dementia friendly community. Wonderful.

Life is full of ironies.

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