.This week I and fellow DEEP members in Shrewsbury and Market Drayton are sitting down with several Board members from Shropshire CCG. We are going to tell them our stories.
I have waited two and a half months for this day, since I wrote letters to MPs and CCG and Council members during Dementia Action Week.
Mind you, the CCG has still not replied to the points in my letter to local MPs which the MPs asked them to do. And they have been reminded.
A little bit of me expects the meeting to be cancelled at the last minute, or for only one CCG person to attend. But…we will see.
What will we say?
That’s up to individuals. But knowing them as I do they will not hold back.
My belief is that there should be consistent services and support across the whole UK. It should not be for CCGs and councils to pick and choose, to decided they cannot afford this or that, or that something highly valued elsewhere would not be wanted in their own patch.
And the government has very helpfully provided us all with a model that they believe “should” be provided.
Here are some screenshots.
And here is the third of the Rights based statements published last year.
“We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.”
So…why can’t we force CCGs and equivalent bodies to provide this model?
Jeremy Stevens told me three years ago that the NHS did not have the legal power to force a CCG to do anything. And of course that is largely down to Mr Andrew Lansley in 2011, setting up CCGs as independent bodies, responsible for buying the health care their population needed and wanted.
And if it’s evidence based you would not think there could be much reason to provide significantly different healthcare for people living with dementia in one county or another.
Dementia is dementia.
The mode of delivery will vary across geography and levels of urbanisation, but dementia will not.
If it is evidence based and proven to be effective and needed, it should be provided.
How, then, do we move forward?
How do we force the CCGs in the current model to adopt the same model everywhere?
Probably by changing the law.
If NHS is hiding behind the law, change it.
If the law is preventing NHSE from imposing evidence based health care, change the law.
After all, if a CCG chose not to provide evidence based care for cancer or COPD patients, or heart disease, there would be uproar, and the NHSI body would be on them in a flash.
But this is dementia.
And organic physical disease of the brain.
Its not a mental health condition, though I am not implying that it is more or less important than mental health.
Dementia is just, well, unseen. It is incurable. We don’t want to talk about it. We’re frightened of it.
So it can be ignored. And people living with dementia can just hideaway and dissolve into meaninglessness.
And the costs of earlier than necessary care and unnecessary and long hospital admissions continue to mount.
Which could be avoided several times over. By investing in a standard, evidence based model.
We need to put pressure on members of parliament to get the law changed. If they get deluged by letters from constituents who demand replies and continue to write and lobby, they will get the message.
Bless them, MPs probably have no idea what health care is provided for PLWDs, so we need to tell them.
So that is what the 3 Nations Dementia Working Group will be doing in the Autumn. And we will be asking for your help.
We need hundred of thousands of you to bombard your MPs.
We have to tell our stories time and again, both as people living with dementia and as care providers.
So watch out in the Autumn. We will make noise and we will get change.
In the meantime join the 3 Nations Dementia Working Group. We haven’t yet got our own website, but this link will take you to our place on the Alzheimer’s Society website.