“This is your year to own it, Cancer. If you feel like you haven’t been in control of your own destiny, it’s time to take back your power and show the world what you’re capable of!”
Thus spake Zarastrologer.
Take back my power. Hmm.
What is going to happen this year?
I’ll be 68. My daughter will get married.
I will grow kale and leeks and runner beans; tomatoes, cucumbers, chillies; roses, alliums and hydrangeas.
And take Lupin on long, lazy walks. And cut grass in the sun.
Control of my own destiny?
Well of course. We have choices. We make them. We live with them. Nothing new there.
What am I capable of?
(Perhaps) God (perhaps) knows.
Perhaps my ever rising cholesterol will kill me. I might stroke out, and away. (Hope it’s big and one-off.) Hal ready to unwind? A chip here, a gigabyte there.
Two weeks doing nothing as the year ends and starts again is good and bad. Good that I stop thinking about what is wrong with the world. Bad that I relax into comfortable laziness and lose the desire to get up and go out again.
It’s getting harder to bounce back. Or to start another lap. Knowing that it is almost a certainty that the oval circuit will bring me back again to this exact spot next time round.
But just like Coleridge wrote in his poems, you go down and you come back up. There is an archetypal pattern to life, a rhythm which flows on and on, up and down, and up and down, and up and down…
The sea rises and falls. The sun comes and goes. Flowers bloom and wither and leave seed for the next year. And the seed rises up again.
And so, 2019.
The Ten Year Plan for the NHS, or rather for our health care. Dementia is mentioned 19 times in the body of the report.
Section 1.20 (page 17) says “We will provide better support for people with dementia through a more active focus on supporting people in the community through our enhanced community interdisciplinary teams and the application if the NHS Comprehensive Model of Personal Care”.
There is also a reference to these teams including a dementia worker.
The other mentions are pretty much side swipes with no particular substance, for example about prevention.
I hope “supporting people in the community” means post diagnostic support of the social care model type, to help us live as well as we can/choose. I hope it does not just mean crisis teams, case finding to prevent hospital admissions.
Here is this NHS comprehensive model of personalised care. This is what the Plan promises.
Look carefully. It is all there. All we ask for.
It seems to have been around for a year or more.
Perhaps I was hasty last week when I tweeted that there was very little about dementia in the plan. What I should have said is that there are very few words. But this model of personalised care is huge. And fantastic.
The key elements of the model are:
- Shared decision making
- Personalised care and support planning
- Enabling choice, including legal rights to choice
- Social prescribing and community-based support
- Supported self-management
- Personal health budgets and integrated personal budgets
There is a graphic video here, on Youtube.
The model is being piloted around the country at the moment.
So, in theory, we people living with dementia will at some time before 2029 receive support that is personalised to our needs and to what matters to us.
In theory, I say…because we have yet to see how the resource for all this will get down to us.
How will Mr Hancock and his successors ensure that the model is consistent across the country? That it avoids falling into the post code lottery of doom?
The biggest factor for me is those who lead its implementation.
We currently have CCGs commissioning our health care, led by decision makers who cannot make decisions and don’t know how to lead. They’re GPs for God’s sake. Get back in your consulting rooms where we need you.
But these are all going to be subsumed into mega STPs, or Integrated Commissioning Systems.
Regional health and care authorities.
(Remember that archetypal rhythm that goes up and down, round and round…?)
Perhaps these new bodies, lead by professional leaders, will be able to force this stuff into reality.
That looks pretty long term from where Lupin and I are sitting.
Unless you are in a pilot or accelerator site you won’t see much of this for a while. And those of us with terminal diseases may not have that long to wait.
(I suppose everyone has a terminal condition…it’s called life.)
So for me 2019 has to be about making real differences locally IN SPITE OF the blockers and barriers across the road.
A network of peer DEEP groups across Shropshire for people living with dementia. (A project funded by Innovations in Dementia.)
More Dementia Friendly Community steering groups across Shropshire. (We already have six.)
Persuading every GP practice in Shropshire to sign up to work to become dementia friendly.
Developing a buddy system for supporting people newly diagnosed.
Putting pressure on the local hospitals to improve care of patients with dementia.
(Is it time to reject their DAA membership for inaction?)
These will make a real difference, here.
Persuading my CCG to appoint a substantive lead for dementia? (So at least they have someone monitoring care and contracts…perhaps even implementing the dementia strategy, or an Admiral Nurse Service.)
The rhythm will continue to ebb and flow, round and round, up and down…
But as a friend of mine write to me yesterday:
Some things in life are bad,
They can really make you mad,
Other things just make you swear and curse,
When you’re chewing life’s gristle,
Give a whistle
And this’ll help things turn out for the best.
Always look on the bright side of life.
Always look on the light side of life.