Sorry for the amount of words on this blog…..
Following the short debate we pre recorded for the BBC’s Victoria Derbyshire programme, it became clear to me that, when I’m on telly, I simply repeat the words I’ve said a thousand times, as they’re stored, waiting to be retrieved at appropriate moments. Whereas I couldn’t think of a good response to the social care issue as I didn’t have time to think through the question.
That’s why I’m useless on policy groups as I don’t have time to ponder before the meeting is up.
However, after recording the programme, I must have come up with some opinions in my sleep, as so often happens. Now I can’t write well nowadays, so it’s a real challenge to decipher post it notes, written in my sleep, but I know my writing well enough to make sense usually, as happened the morning after…..…
I didn’t come away from the pre record with a particularly good feeling about the programme we recorded and which was shown yesterday. It was wonderful to have such a diverse selection of people present but I felt there were too many to make a sound impact for the time allowed. It felt like the message was watered down and flat. It’s almost a shame it wasn’t 2 programmes, one which concentrated on our film and the changes that had taken place in the last 3 years, which would have led nicely onto a programme about Social Care and provision, especially ahead of the Green paper on Social care. But at least they DID devote a decent amount of time on this wonderful programme.
For so long, in this country, we havn’t talked about the complexity of the individual living with dementia. The ‘need’ for support and services has been ignored and thought of as the realm of charities and this is one of the main reasons for the chaotic state of social care at present.
For so long people with dementia have been shoe horned into the general services which others believe is our need instead of individually assessing need. Now we’re beginning to rise in numbers and TALK in public, there’s a realisation of the individuality of ‘need’ – we don’t all ‘fit’ into current services provided.
It’s almost as if it’s too late for all those of us currently living with dementia, both in the early mid and late stages and all stages in between. It feels like we’re the guinea pigs being used to try to sort out this mess so future generations can benefit.
If everyone currently living with dementia, in whatever stage, has to be guinea pigs for change to happen, then so be it, but change there has to be. No more silence, no more voices of the few, no more talk and good intentions – there has to be actions.
In the next 5 years huge social care change must take place so that in 10 years time, we’re proud of what the country has in place. People living with cancer aren’t shoe horned into inappropriate treatment, those recovering from a stroke aren’t shoe horned into inappropriate treatment….so why are people with dementia? Dementia lags behind in medical innovation so the need for social transformation is greater.
We don’t have innovative medical procedures to follow or a plethora of choice on medication because research has been sadly underfunded so the need for social transformation is greater. In my mind this should naturally lead clinicians to use social prescribing instead of automatically looking at the medical model and then discharging us.
No more silence and ‘making do’. We need to be realistic though and also examine various ways to fund this enormous need – what should and shouldn’t be funded – as we all know there is no infinite money in the pot.
Yes it is a daunting job to transform social care, but then surely it was a daunting job to create the NHS in the first place, but it happened.
Wouldn’t it be wonderful if social care was a job of choice, with recognition, status, and a value placed on the skills of the staff?
Wouldn’t it be nice if individuals were treated as simply that, individuals with individual needs?
Wouldn’t it be nice if policy makers actually listened to the people that mattered and had most knowledge?
Which beggars the question, ‘Who is responsible and who should be involved in this massive transformation’? Well, only people who truly understand the problem and a large proportion of whatever group is set up should be made up of people with dementia, supporters, experts from the likes of Innovations in Dementia, TIDE, who are not afraid to stand up to policy makers – non negotiable and paid appropriately. Real people with real knowledge, real experience, along with the few policy makers who can make it happen but who LISTEN, MAKE NOTES, and put into ACTION.
But not me, as sadly my brain doesn’t engage quick enough in meetings, but the likes of Nigel, Chris, Jayne, Ming Ho, Philly Hare and Jean Tottie would be ideal and the likes of me, consulted by them, in order to give us time to think eons later…
Wish my brain had thought and spoken all that my hands had just typed……
You can watch the programme on the link below. The first bit including our film is 15mins in to 34mins and the discussion on the second part to be found at 1hr 12mins in to 1 hr 44. Apparently they had literally thousands of emails and txts during and after the show. Special thank you goes to their reporter, and now our dear friend, Jim Reed who made it all possible.
or you can read about it on the BBC news website and has each of our videos…..