Well, I suppose it was to be expected.
Nearly two weeks off. Family home. Christmas feasting. Diet broken.
Our Christmas day was lovely in its way, but the noise and people drove me crazy.
And articulately crude. (Sorry)
Then some lovely weather. Dry, good to walk in. Birds confused and singing spring song.
Out in the garden, digging a new patch for more flowers and veg.
Ordering seed, dahlias, gladioli, chrysanths.
Always a great feeling of spring round the corner…
And now it’s nearly time to start again on the other stuff.
I haven’t done nothing. My CCG got a long analysis of their board papers since April 2017, looking at references to dementia.
Searching (acrobat made it easy) for any mention, any statement, that dementia is on their radar, in their plans.
Searching too for any equality data or statement relating to dementia.
Of which there was none. Of course.
I asked by FOI last month for every Equality Impact Assessment carried out in relation to dementia since January 2017. The answer was: none, because there was no need. Qualified by saying that, of course, the CCG had carried out many Equality Impact Statements in other areas during that time.
No need? For God’s sake!
So I have asked how they know that they are complying with the Equality Act 2010 in relation to people living with dementia, and how providing dementia companions (navigators/advisors) in 20% of the county but not the rest counts as equality (equity) of care.
There is no EDS2 assessment in the board papers over 33 months. Having been a member of the CCG group that looked at EDS2 and public participation until 2016, when the group folded, I rather think none has been done at all. So I have asked the question.
What do these people think they are doing? Rights are not optional. Fairness is all we ask for.
If it were cancer…! Yep, you know that one.
And this is the CCG that has stopped all public questions at their meetings. Only advance written submissions are accepted, and responses are printed papers left on chairs at the meeting.
That is how much they welcome public participation and information sharing.
Yes, they have had a really hard bashing over our hospital reconfiguration plans…for four years…which no one in Shropshire has the ability to sort out properly.
(Cost of £312m during consultation is now £490m and unaffordable. And they didn’t see that coming? Methinks they hid that one away the day it dawned. And they want to refurbish a crumbling hospital with £100+m outstanding repairs! Rather than just build a new one on a better, fairer site.)
As I say, the CCG has had a bashing for years, so they closed it all down. That’s the way to earn your public salary providing healthcare for your public. Close us out.
Do to us, not with us.
[Did you notice that this morning I have really bad back ache? Must have tweaked something lifting a large pot yesterday. Feels like I have a large rusty nail sticking in/out. So perhaps I am a bit crotchetty today.]
So what will 2020 bring for me and my kind?
Shropshire CCG may decide to fund Dementia Connect (Alzheimers Society), ie dementia advisers, across the county.
Or they might decide to extend Dementia Companions (navigators) across all Shropshire.
They just might require the Memory Service to provide meaningful post diagnosis support for everyone, rather than just those on dementia related medication. (And it’s not meaningful, by the way.)
They might work with ‘us’ to introduce co-produced living plans that focus on what matters to us.
They might carry out an equality impact assessment to establish whether people living with dementia are discriminated against though their CCG choices/decisions. (‘They are’)
They might insist (and monitor) that dementia advisers/companions/navigators are fully skilled up to work effectively with us. (As committed in the Dementia Strategy, but never followed.)
They might, even, choose to meet some of us and work together to devise better care after diagnosis (palliative care from diagnosis of terminal disease), ongoing support when we need it.
We are getting well up the richter scale here, of course…
[I need to say, since he may read this, that our CCG dementia lead Tom is great, and working closely with us. (I taught him English for a year, so it’s understandable.) The question is whether he will be listened to?]
And then, away from the CCG, what else is going to happen?
There will be the local health economy dementia steering group, which will try to get decision makers (to attend) to improve our services, and introduce new Living Plans.
The local DEEP groups project to establish up to a dozen DEEP groups across Shropshire market towns. Five so far. Ten would be a real success.
Our Admiral Nurse research project with DEEP groups across the country. The questionnaires will go out later this month.
And, for me, the Dementia UK LEAP group which comes together to provide insight and critical friendship for the organisation as it grows the band of Admiral Nurses across the country. Over 300 now I think. (Not, of course, across Shropshire yet, though one care provider group has employed one.)
I have almost joined my acute NHS trust’s new Equality and Diversity public involvement group. Almost, because it has not yet met and I have to attend some training sessions first, it seems.
Then there are other things I have been thinking about…
There’s the local DAA, which is forming a steering group with officers, in order to run a little more formally as a small charity. I shall probably ask to join the group without an official role.
Things will come up. Conferences, speaking opportunities. DEEP area meetings. Perhaps a DAA conference here in Shropshire/Telford.
I love those speaking slots. Yes they feed my ego, but they are exciting and I always meet lovely people, some I know, some I don’t.
And there is the garden, the grass, and Lupin. And getting to a beach for that exhilarating salty air, and inspiring views over the archetypal rhythms of waves.
And someone (who will remain anonymous) has suggested I write a book. Thanks for sowing that thought worm in my head!
It’s like back ache. It goes away and you stop thinking about it, and then a few days later returns, a rusty nail in your spine. And you spend an hour at 2.00am wondering what the hell it will be, contain, look like.
There’s lots to do, and time is running out. The hour glass is emptying.
Clive James’ recent death touched me. A fine, supremely intelligent and witty man who left us some wonderful poetry.
Forgive me, I don’t think I am about to die. I just recognise that every day I gets closer to being unable to do things that really matter to me. Like all of us, I must make good use of every day.
And as the labour politician Tom Watson, who recently resigned, wrote in the Guardian this week, I must surround myself with people who are relentlessly positive, rather than those who sap your energy and will to live!
Onwards, upwards, in yer face! Game changers. Hell raisers. Let’s get to it.