I joined a group of GPs in Birmingham recently for an afternoon CPD Training in Dementia.
What a lovely group of people who made me very welcome.
I spoke about my own early symptoms and diagnosis, and then about what matters now, and what is available as support. They said I told them things they had never fully realised before, mainly that it’s about more than memory.
I showed them the new Young Dementia UK diagnosis tool for young onset dementia. Not one of them had heard about this. They were very interested.
During the afternoon there were many comments about the lack of post diagnosis support for people living with dementia. There were still elements of the old “what’s the point of diagnosis if there’s no treatment, cure or Support?” But it was said from frustration that support was not being provided.
They felt they might be raising expectations that once you have a diagnosis something will be provided to help you live with it. And it isn’t.
I made the point about preparing for a time when you might lose capacity. And doing things you might have been putting off. And the sheer relief that many feel when they understand why they have been feeling as they have for several years.
So I think and hope that this group of 25 GPs left with better understanding of what matters to us, and a fuller picture of all the possible symptoms.
But there is a massive irony in all this. and it seems to be lost on them.
Clinical Commissioning Groups choose what healthcare to provide in their areas. They commission services, from nhs providers, private providers, voluntary providers.
And who are the commissioners?
The wonderful Lansley reforms eight years ago put GPs in charge of choosing what services should be provided in their local areas. Because they know best.
I remember being told time and again that the CCG was a “member organisation”. I questioned this time and again too. What does it mean?
The answer was that all GPs in the area (for example Shropshire) were effectively the CCG. Everyone had a direct say and involvement in choosing and controlling services.
Of course, most didn’t want this.
And a curious thing happened. GPs who joined the CCG board gradually changed. They morphed into traditional commissioners. They lost what made them local and special.
They had to play the NHS organisational game, to their central rules.
So when I hear a roomful of GPs decrying the lack of commissioned support for people post diagnosis, I think…
Nothing has changed, has it?
Local decision making to central rules means…
I’ll tell you who knows what is needed locally.
The people with the disease.
The people living with dementia.
But they don’t ask us, do they!
We’ve got the evidence. We can provide it, because we’ve looked for it. The proof that the benefits are measurable and hugely outweigh the costs. Savings everywhere.
That’s why I’m working, along with many others around the country, to establish real, trusted engagement between people living with dementia and providers and commissioners.
Not the usual, formal, across the table challenging. Or brief breathless meetings which start with ‘I’ve only got ten minutes…”.
No. Let’s sit down over lunch. Let’s chat. Let’s hear each other. Listen to our concerns and aspirations on both sides.
In fact, remove the “sides” barriers.
We’re in this together for the same reasons.
“Seek first to understand, then to be understood.”
“Win – win solutions.”
Stephen Covey was absolutely right.