Oh my gladioli

As the song goes, it’s nine o clock on a Friday night…play me a song, you’re the piano man…

And it’s time to write a blog.

And we’re in for a very hot weekend.

The flowers I am growing for my elder son’s wedding are coming well, and should be in bloom in a month, on time.

I have had a fascinating two weeks, with a speech to Shropshire disability network and a workshop at the Alzheimers Show  with DEEP, about what is good for my (our) wellbeing.

And yesterday I was at a new patient co-production network design group in London talking about how we would develop the network in the future.

So, yes, I’m busy. Or, as I said to a swimming and dementia friends colleague today, I have been just doing stuff. Without which I would be bored.

What was striking about the six of us in London last week, who all have young onset brain disease (dementia), oh my gladioliwas that we all said our diagnosis gave us new life.

Yes, it’s shit.

Yes, it’s bereavement.

Yes, it’s the road to nowhere.

But we all, unrehearsed, said we now do things which we would not have done without the diagnosis.

It’s a sort of release from those last ten years of managing to stay in your job. Struggling to survive. Wanting to do other things, those dreams.

We just have fun. Or write poetry. Or walk. Or cycle (a long way). 

We are not sad. We are not doomed. We are not imprisoned.

We are released.

Bit like “when I am old I will wear purple”.

It’s a release.

Why the hell does it take brain disease and impairment to allow us to be able to just do what we want?

It’s like being a hippy in 1967. Flower power.
Do you remember that fab song, Are you going to San Francisco? Scott Mackenzie, I think.

And Woodstock.

I feel liberated. Free of the conventions and rules that govern people.

I don’t have to wear a suit every day. Or acceptable shoes. Or organise maternity cover. Or negotiate with a member of staff who arrives late every day. Or find ways to get rid of staff without sacking them. Or do the monthly time sheets.

No, I can walk with Lupin up a hill. Talk to a stranger at Colemere with a husky cross rescue from Indonesia. (Yes, true.)

I can grow flowers for my son’s wedding. And have a beer with him. And get measured for tails.

Yes, I make mistakes. I find I have not taken a certain pill for a few days. Or I’ve lost (thrown away) my shoes. Or I fall over. Or I wonder which way to get back from the toilets.

But I tell you what…I’m right on the money if I have time to prepare my brain. 

I’ve recently been doing some work to establish a new network of people/patients with long term conditions and life changing diseases or disabilities across the country, to promote co-production in healthcare.

We are a small group, head-hunted (no less), and I just find the other people involved wonderful to be with.

So enthusiastic, so knowledgeable. Diverse. Driven by values, and all committed to influencing change in the NHS.

I have had issues with the patient leader programme. It started a few years ago with an open access training programme of six sessions. Self-selected membership.

And many of the patient leaders from this programme were anything but leaders.

But our new network, which we are still designing before launch, will be different.

It won’t be a hierarchical organisation.

It won’t be a free for all.

And it won’t accredit just anyone who chooses to sign up.

What it will be is a pool of people with the skills and values to lead or take part in co-design and co-production around the country. 

We will introduce a new paradigm for patient engagement.

We will be equal, respected partners with paid NHS staff.

We will be valued because we will bring about shared solutions that are equally beneficial for patients and providers.


I also recently met the commissioners for mental health services and dementia in Shropshire to talk about why on earth there is so little worthwhile support for people living with dementia here.

Post code lottery.

After lots of detailed explanations, it became clear to the three of us that if there was no money available we would have to create ultra low cost solutions. Community based.

So, we will work to set up a county wide network of peer support groups, for mental health and dementia illnesses, and to develop co-production with providers for the services WE want.

The reasoning is that if the commissioners are (for one reason or another) unable to change their pattern of spending, we service users should combine to work with the provider to change what they provide to what WE want.

Co-design. Co-production. Service users at the heart of services. Personalised care.

You name it…we want it. And it doesn’t need to cost much. 

If we mobilise we can get it.

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