The Dementia 2020 Vision includes this aspiration…
For England to be “the best country in the world for dementia care and support for individuals with dementia, their carers and families to live”
We are today surrounded by aspirational, visionary statements issued proudly by organisations that want to be noticed.
My local NHS acute Trust has for two years set out that…“Our Vision is to provide the safest and kindest care in the NHS.”
Is this likely? Is it achievable?
In December their A&E waiting time measure crashed to 58% seen, and treatment started, within 4 hours. There is a major investigation of maternity services following excess maternal and infant deaths and birth injuries over ten years. Staff are leaving in droves.
CQC reported that the Trust was “inadequate” for safe and well-led. That’s the lowest rating.
Safest and kindest? Least safe and least kind?
How will you ever judge whether a system or hospital is safest or kindest or the best country in the world to live with dementia?
Arguably safest is measurable; the others are not.
And why set yourself up for ridicule by saying your vision is to be safest and kindest or best when in fact your leadership and management are so inept that your measures plunge?
A business would be wound up, bankrupt. The NHS carries on. The same failed leaders carry on, their vision in tatters.
The emperor truly has no clothes.
So, England to be the best place in the world to live with dementia? By 2020?
I am hoping to attend (perhaps even chair, like last year) this year’s conference on Dementia 2020.
Last year a civil servant trotted out some wonderful assertions based on hopelessly optimistic interpretation of select evidence. You know the sort of thing.
Actually, we’re doing rather well. The diagnosis rate is at the target of 67% nationally. Lots more people are taking part in research. The Government has led the development of the largest ever funding for research.
But the audience were muttering. It really doesn’t feel like that on the ground, in Sheppey or Sheffield or Shrewsbury.
And I challenged him on the spot.
A year later…
Things are not improving in many places.
There are still too many GPs turning patients away, telling them it’s just ageing, or stress, and what’s the point of a diagnosis!
There still is inadequate post diagnosis support.
There are still too few areas with Admiral Nurse services.
There are still too many areas without dementia navigators.
Care home and agency staff are still rarely trained sufficiently so they can provide good, appropriate care.
Hospital staff still have very little training beyond Dementia Friends, which is not even level one on the Dementia Skills model. (All health or care staff who have regular contact with people with dementia are supposed to have level two training.)
There is still too little meaningful support for unpaid carers. And what there is is often almost impossible to find, working through the maze that seems often deliberate.
So, England is nowhere near becoming a good place to live with dementia.
It is far from the worst, of course. And you can be best at something if everyone else is worse.
We know that many more developed and well off countries around the world do worse than us. We know that in some countries, Italy for example, there is very little infrastructure around dementia care, often for cultural reasons.
We also know that in many countries much more is spent per head on health care, and their systems are much more innovative or extensive or well developed than ours.
We have a system in which NHSE and the Government can set out a minimum expectation of diagnostic and post diagnostic support, and the local commissioners can ignore it.
We have a system that measures success in care in terms of coding on GP QOF records.
We have a system in which a hospital can get away with claiming two thirds of its staff are dementia trained, when the training is just a few minutes briefing during induction.
We have a system which has committed all its funding in total ignorance of dementia, in a society which fears dementia above every other disease, and which seems unable to tear itself away from ‘what we’ve always done’.
So, HM Government and Matt Hancock, when you send a civil servant to this year’s Dementia 2020 conference, please make sure s/he has the humility and honesty to say it as it is for us. Every day.
Better still, ask us, living with dementia and providing unpaid care, to tell you, government and local commissioners, what we need you to do.
Why are you all so afraid? We won’t ask for the earth. And what you spend will save a lot more down the line.
Above all, we need to change the way we do dementia in this country.