So here goes.
Spring is coming. Some movement around the country may be allowed by April. But the virus will come and go and come back again, as it mutates and moves around. At some stage we are going to have trust our vaccinations and meet again.
I have laid off government and NHS organisations in England for a year. I’ve given them a break to sort themselves out. They’ve had Covid to deal with, although an awful lot of that went straight to private companies with zero experience of healthcare. They’ve had to deal with merging CCGs and starting to form Integrated Care Systems. They’ve probably had to deal with demands for cost savings from the centre.
But I (and others) are impatient again for change.
I have just read the Scottish Government’s plan for post covid dementia care. It is an admirable document, with 21 firm ‘will do’ commitments.
Now I am not completely stupid, so I know that not all of every commitment will, or indeed can, be completed. But it is a great credit to them all in Scotland, that between all the organisations and many plwds and family carers they have managed to agree to implement a real plan for continuing their work to improve living with dementia.
I would bet that in Wales there is similar work going on.
The common thread is that both countries have single health and care systems rather than fragmented, quasi autonomous commissioning groups and NHS Trusts. And NHS England has little or no power to tell them what to do. I know this because Simon Stevens told me a few years ago!
So no one at the centre is able to force or influence a single, unified approach to dementia in England. We all know this: the post code lottery is evident everywhere.
I am missing telling truth to power, or at least being a voice among many shouting from the stage.
I am missing being able to influence.
I am missing social and professional contact with dementia professionals and healthcare decision makers.
But always I hear that other voice telling me that ‘we’ have been doing this for many years, with increasing presence and volume, but have had little or no effect. CCGs continue to ignore us and dementia if they choose. The government makes occasional nods in our direction but makes nothing much happen. Local memory services tweak a little here and there, often in response to budget reductions, leading to reduced not increased services. GPs’ interest in change is sporadic, and usually driven by individual interests or experience, rather than evidence based and values driven medicine.
We will not get our show back on the road by just talking to ourselves on zoom. (Although that is the source of all my joy…talking with friends)
We will not get much done by shouting about injustice and unfairness.
What we need is real, face to face engagement with decision makers and influencers.
And we need to use evidence.
For example. Dementia UK has solid evidence of the social and economic return on investment in Admiral Nurse seevices, gathered about three years ago. This demonstrates that the return is at least £1.50 for every £1 invested (and often more) plus much unmeasurable benefit in terms of wellbeing.
And yet around three quarters of the country has no admiral nurse services. They are growing, yes, but many thousands of people severely affected by dementia do not get their face to face help.
The GOV.UK list of what we should expect after a diagnosis of dementia is a good starting point, but it is not mandatory. In fact experience would suggest it is ignored or even unheard of.
A small chink of light in the tunnel is the introduction of dementia specialist staff into Primary Care Networks, another new structure in the NHS. (Or, rather, on the edge of the NHS, since GPs retain their status as private contractors so they cannot be told what to do; just what they will be paid to do.)
I hear that these new dementia specialist staff are bringing renewed interest and knowledge into practices/networks, and hopefully they will be everywhere within a year.
Nothing ever changes overnight, I hear you suggest? We have to wait, accept the tiny changes as they happen, and hope that in 20 years’ time the system will be better and consistent.
Trouble is, many of us will not be here in 20 years. And while it is good to work for something that we will not directly benefit from, it is also incredibly frustrating.
And there you have it: the scales are finely balanced. Do I/we campaign and get frustrated by lack of progress, or do I/we sit back and get frustrated by not engaging in campaigning?
I walk the dog every day.
The postwoman comes every day.
Zooms happen every week.
Groceries come every fortnight.
I still get fishing phone calls which annoy me beyond all understanding.
Life is a bit monotonous at the moment.
Oh bugger this bloody pandemania.