So what have I learned in the last three days?
I’ve been to Llandudno and London.
To a Welsh “dementia meet up” and to the NHS Citizen event.
I’ve met and hugged lots of my new extended family in Wales.
What lovely people my fellow activists and dementia experts are. And how comforting it is to be reassured that my thoughts and convictions are theirs too. That I haven’t lost my bearings, or my sense of reality.
Now and then I, perhaps you too, lose confidence in what I am saying, what I think is the truth but others question. Then it’s time to meet the family and get grounded again.
I’ve learned about some wonderful work going on in Wales and elsewhere. Arts in dementia…dementia in arts activities…Dementia adventure…TIDE for carers…”lifechangestrust” and sensory changes…
I’ve understood better the difference between clinical models of care and social models, and that they need to be integrated in delivery.
I’ve learned that clinicians’ claims to provide care for people with dementia are just that….clinical. They ignore or don’t understand the social stuff that makes life worthwhile, or they think it doesn’t matter.
I’ve learned that CCG spending in Shropshire on services and support for people with dementia has dropped by 33% in three years while the number of people living with a diagnosis has risen by 40%. Parity with physical health care is just a word which sounds good but has no meaning.
I’ve learned that without social activity and community engagement people with dementia see their health and wellbeing disintegrate into loneliness, despair and ill health.
And that this could so easily be prevented if we just looked forward instead of back over our shoulders.
I’ve learned that if you ask citizens without knowledge what the future should look like they can only imagine what they know. “You don’t know what you don’t know…”
I’ve learned that NHSE appears to be relying on citizen activists to bring about the revolution in dementia care we and they want.
I’ve learned that NHSE will soon produce a blueprint for the future of dementia care in 2020. But I don’t know how they will lever it into reality. I hope they do.
I’ve learned that most people just say there’s no money for changing dementia care.
And that’s rot. It’s about choices. It’s about spending money differently to produce better outcomes, and better return on investment.
And I’ve learned that it will take a lot of courage and resolve to achieve the change we need.
It is unbelievable that 90% of people affected by dementia receive no support to live well and to maintain their wellbeing. Some ask for help, many don’t. Some ask and don’t get it. Many have no idea what might be available. Many have the wrong post code. And their lives disintegrate. When they don’t need to.
And we accept it!
Prime minister…you need to step in and make sure your vision and challenge are made real by 2020.