Time to reflect.
What have we achieved? In Shropshire and wider afield.
There are now just over 12,000 dementia friends in Shropshire, Telford and Wrekin.
Our DAA has some 60 member organisations.
There is a new DAA in Newport, and lots of signed up supporters.
Ludlow and Oswestry are about to launch DAAs, and Whitchurch will soon have one next year. All down to a few wonderful, committed, passionate people.
Telford and Wrekin CCG has committed to rolling out the Dementia Companion model that we all co-designed two years ago, so that when people are diagnosed they are contacted and supported as much as they choose throughout their journey with dementia. The model is now working in Newport.
Shropshire CCG will be piloting this role in Ludlow and Oswestry early in 2018 for a year.
Memory service (agh, how I hate that label!) staff are now arranging sessions in some GP
Practices to meet people with cognitive impairment and diagnose the more straightforward cases locally, in places that people know.
There are four peer (DEEP) groups in the northern half of Shropshire for people living with dementia to meet informally and regularly.
Diagnosis rates are up to 70%.
And yet…and yet…
How many people living with dementia actually access any meaningful support?
I’d say no more than 300 in Shropshire.
DEEP peer groups, singing for the brain (being phased out?), Dementia cafes, art and craft groups, church groups…all good things. But reaching very few.
Alzheimers Society Support workers providing advice and signposting to those who enquire.
There are 3,000 people over 65 living with dementia in the county. Another 240 under 65, for whom the diagnosis rate is an appalling 25%.
So let’s estimate that 10% of people living with dementia in Shropshire get meaningful support to enable them to continue to live as they choose within their communities. And I’m probably being generous.
Yes, all of us with a diagnosis will receive a visit a couple of times a year from “memory service” staff. We’ll be told to minimise risks, and we’ll be given a care plan that we’ve had little input into, and which we have not agreed before it’s sent to us in the post.
When families are in distress in Telford and Wrekin they will get great support from the Admiral Nurses there. But Shropshire doesn’t commission them.
The Dementia Companion role will provide invaluable support and advice and a bit of handholding to help people remain living their normal lives in their communities, engaged, doing things that they want to do.
A diagnosis does not and must not change how we live. The brain disease will, but not the diagnosis. And to counter the negative effects of the brain disease we do need the sort of moral and social support, as well as practical help, that peer groups and dementia companions provide.
We have some wonderful NHS staff working to improve the health care that people living with Dementia receive, in hospital and out.
But there is not yet an engrained cultural and professional acceptance that dealing with Dementia is everyone’s job. That you can’t just appoint a Dementia lead and a few (excellent) HCAs and tick the box that says you’ve dealt with dementia.
It’s everyone’s job!
Training for health care staff is paltry. It may be included in induction for new staff, but it’s less than an hour. It’s skimpy coverage of the Butterfly Scheme and John’s Campaign carer passports. Because that’s all the managers will allow time for.
A few staff do more detailed training…hmm, 1%, perhaps 2%.
There are places of excellence, where – guess what – one or two staff are so passionate they take the rest with them, usually fighting against managers rather than alongside them.
And behind all this work is a small group of people, many living with dementia, who are becoming more and more involved in, and confident in, campaigning for better support services and better health and social care.
campaigning with a small c.
It’s not headline grabbing. It’s not shouting (usually).
It’s being present and talking and challenging.
It’s travelling…often without expenses…to meetings and groups to provide the voice of the people for whom services are provided…or ought to be.
Nothing about us without us present. Please.
It’s telling professionals about the reality of loving with dementia that they neither see nor feel, because they can’t. And because they don’t often ask.
It’s time that social and health care commissioners and providers fulfilled the legal, statutory and moral rights of people living with dementia…
- “We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.
- “We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.
- “We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.
- “We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.
- “We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.
I want to say a huge thank you to everyone who has contributed so much to raising awareness and improving the care and support that people living with dementia get. You’re unsung heroes.
And everyone else? You commissioners and providers and managers and doctors and everyone. You shopkeepers and bus drivers, councillors and everyone. You can all do something to make life better.
So, in 2018, what will you do?