No cliff edges please

No cliff edges please!

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And I’m not talking Brexit.

I was invited to speak (with Rachel and Peter) about DEEP at the current Dementia UK conference for Admiral Nurses.

On my way up by train from my little market town, 8 miles up the line a very spruce young man sat down and got his laptop out. We all do it now. Tablet, laptop, phone…and like on tube trains we try hard to ignore each other.

But I saw this guy was wearing a 2million dementia friends badge, and the big blue outline forget me not, on his lapel.

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Well. I had to ask, didn’t I.

Turned out he was the Ops Director, local services, for Alzheimers Society. And he lives up the road!

What a lovely, enthusiastic man. Passionate about dementia (of course).

We talked. And he said he is keen to get local Alz Soc staff and Admiral Nurses to work together more closely. Which is also what I want.

Of course, there are organisational barriers to overcome. Charitable aims, money, brand, defensiveness…just like the NHS economy.

But for us, people living with dementia, when we need support we need continuity, ease of access, consistency in skill and knowledge and approach.

At the moment it seems that we have Alz Soc staff to give time limited support or information, in the early to moderate stages of the disease process. We also may get support from the local memory service staff.

God only knows why we still call it a memory service. It’s time to dump this falsity which perpetuates the myth that brain disease is only about memory.

Then when we become more severely affected, and our families suffer, we may have an admiral nurse to work with the family. If of course there are any in your area!

Needless to say, not in Shropshire.

So we have at least three different types of support. Each with different training, priorities, levels of risk aversion, and ways of engaging.

It ain’t easy, you know. Most of us are reluctant to ask for help till we’re desperate. Miserable, depressed, don’t know what to do…then we’re in entirely the wrong state to go out and find whatever is on offer. And to know which to approach.

Of course there are also social services and the GP, Age UK, dementia cafes…

We need simplicity and clarity, consistency of approach, non risk averse, personalised support, for us and our families to continue to live as we choose, doing what makes us happy.

And we want professionals who have good quality, up to date training, with easy access to other experts.

I see a huge benefit in Admiral Nurses working in the local health economy because their extra levels of training and experience and skills will filter out to other teams and services. It’ll cascade down. Bubble up. Spread sideways.

I’d like to see DEEP groups everywhere.

And Friendly Faces at “dementia services” when diagnoses are given.

https://www.bbc.co.uk/news/amp/uk-wales-north-east-wales-41265466

I’d like multi-disciplinary, community meetings with Alz Soc staff, Admiral Nurses, GPs, Dementia Service staff, Social Care/Services, where approaches and skills and experiences are shared. Where individuals can be discussed and approaches agreed.

Because, what matters is not the organisational branding, but the people affected by dementia.

We are who you exist for.

Ask us what matters to us.

We’ll tell you.

And once again, hats off to Dementia UK for creating their new user group, LEAP.

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Together we can.

5 thoughts on “No cliff edges please

  1. Thank you, George, for sharing your needs and possible solutions. It is very helpful to read your thoughts. Last week 5 of my colleagues and I attended a lecture by Prof Steven Sabat from the USA about how people with dementia DO make new memories and he gave evidence to back that up his view. Like you, he said we have to stop seeing dementia as “memory loss”. If I can I would like to quote your comment “God only knows why we still call it a memory service. It’s time to dump this falsity which perpetuates the myth that brain disease is only about memory” in a new blog I am writing. If you give permission I will link to this blog. With thanks. Kate Lambert, CEO, Daughterly Care

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  2. Well put George, we need these professionals to work together, help us understand what they do and not refuse to work with each other because i.e., they’re not professionals, medical information is not shared amongst these different groups. Help us not be confused.

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  3. George this is just the post I needed. Currently, my access to a Support Worker at our Alzheimer’s Society has been stopped because this doesn’t fit into a new Pathway. It’s their Pathway of course and not mine: I think you will know just what I mean!

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  4. Pingback: Dementia: Time For Change | Seeking The Good Life

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