I’m posting this “story of me”. Using social movement theory, and some help from my clever wife, it’s what I will say tomorrow at a Patients in Control training event. It’s me persuading them to join me in this movement. I hope it works.
My name is George.
When I was 24 I made what seemed like a big big decision at the time. I left a safe certain comfortable future to become a student. It was the first of many momentous decisions I have made in my life.
I knew I wanted to make a difference to other people’s lives, and in particular their education.
I’d begun to get values.
And they were different from those of my upbringing.
Perhaps it was a bit of rebellion and I was full of angst.
I became a teacher. Later I worked in health and social care, and in hospitals, and in developing patient involvement.
I have chosen to make a difference. I have chosen to get involved.
But what I have not chosen in my life is to have ill health.
Except perhaps by making unhealthy lifestyle choices.
I’m a person with several long term conditions.
I’ve been adding to my collection for a few years now.
I’ve had major operations and minor procedures.
I’ve received the very best and the very worst of what the NHS has to offer.
So I know.
I was only 51 when I had my coronary bypass.
A year earlier I would have probably died, waiting.
But because of the new framework I had treatment in ten days.
Out of the blue.
I was knocked off my feet for a few months.
But I got back on my metaphorical horse and went back to work.
I visited wards and consultants quite frequently, pain here, anxiety there.
Eventually one said he could find nothing else wrong that he could fix so I had to go away and live with it.
That was hard and I felt abandoned.
I still was convinced there was something not right.
And I felt angry.
Three years ago I told my GP that I was concerned about my memory and conversation. And that I sometimes felt disorientated. He said don’t worry. It could be stress, age…I don’t think it’s likely to be dementia.
Two years ago I said the same, but that it was getting worse.
He said well we couldn’t do anything if you had dementia so don’t worry. You’re already on all the drugs for vascular dementia.
Well, I did worry. And so did my wife.
Last year I said I really did want to know whether I had dementia.
He referred me to the memory clinic.
In May this year, the day before my eldest child graduated as a doctor, I was diagnosed with mixed dementia.
It confirmed what we knew.
But it was a shock to have Alzheimers as well as vascular dementia, but it was a blessing in disguise.
I was eligible for donezepil which made an incredible difference to my life.
My brain woke up.
And my life has been much better ever since.
It also meant I could plan for the future.
We did a power of attorney.
We told the children.
We told the neighbours.
We bought a camper van to do the trips we were planning for retirement.
We found out about local groups and activities. And about the disease itself.
And I chose to go public.
I chose to share my story of how it feels to live with dementia.
How it feels to have that diagnosis.
The ups and downs.
The symptoms that come and go.
I chose to get involved with the dementia friends and dementia action alliance movement.
I started the Shropshire Dementia Action Alliance.
I started my blog about living well with dementia.
Why do I do this?
Why do I spend several days each week at tweeting, blogging, in meetings, walking around wards?
Talking to clinicians and commissioners?
Because I want to make a difference for people living with dementia.
Because I can influence change.
Like creating a Shropshire Dementia Roadmap for primary care to use.
Like getting local shopkeepers to give people who are confused a little more time.
Like leading a hospital to adopt dementia friendly environment standards in their estates management plans.
So that people with dementia and their carers in the future have a chance to live well with dementia, living the lives they want, in the ways they choose.
I want people with dementia, and any other conditions and diseases, to be in control of their lives and their health care. Like I have chosen to be.
So what difference has this made for me?
I do stuff around Shropshire and I feel a sense of purpose doing it.
I feel happier.
And I am making life with dementia better for others.
And this way I see a doctor less often.
And what I am asking you all today is…
Join me in this journey.
Join me in taking steps on the journey to put patients control of their lives, their health care, the decisions they make.
The challenge is not too great.
We change the world through small steps, small changes.
Together we can do this.