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.

Believe me. I’m always right. About me.

Believe me. I’m always right. About me.

I was listening this week to a radio programme about personalising health and social care for people…

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Reducing unnecessary hospital admissions…

Providing health care at home…

Treating people as capable of deciding how they wanted to live and deal with risks…

And I was electrified when I heard something that went like this:

“You’re always right about yourself. No one else can know how you feel, what you enjoy and fear, what makes life worthwhile. Everyone else is always wrong.

I may be meandering back to my theme of who knows best? Nothing about us without us, but I’ll pursue it a little further.

Professionals, i.e. people employed and hopefully trained to do specific jobs in health and care, are expected by us all to know stuff. We need to trust them with our lives and bodies.

Trouble is, these professionals have high levels of risk aversion. They fear allowing people like me to take risks with our lives.

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The example on the radio was of a person who was unsteady and frail, but who really did not want a Zimmer frame. And wouldn’t use it if provided. What do you do? You can’t just ship them into a care home! Nor should you.

What you do do is help the person in other ways to move around as safely as possible. A few little tips and tricks. Some exercises perhaps. And you let them get on with their lives as they choose.

Do you insist that someone stops having their gin or beer in the evening? Well, not if that is what allows them a degree of wellbeing.

But of course health professionals don’t like this. Understandably, as a result of their training. And they have to fight their instincts to stop this paternalistic behaviour.

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We want you to give us the appropriate medical advice and care choices, but you must let us decide whether we want to accept them. We must make our own choices.

Professionals, you may be able to look after us, but don’t impose yourselves on us. Don’t try to wrap us up.

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We probably won’t take stupid risks, any more than anyone else does. And they do!

But that’s our choice.

And remember, we are always right about ourselves and how we want to live our lives.

It’s our choice. Not yours. Please help us to live as we choose.

And please don’t design services for us which we don’t want.

Better still, provide services that we do want and value. Like peer support groups.

We are the Disrupters

We are the disrupters!

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You know, the thing about being a volunteer activist in healthcare is that it’s sooo frustrating.

There are various mantras around…

Nothing about us without us…

Do it with us not to us…

But we’re always fighting against an imbalance of power. Against a hierarchy where we are at the bottom, if even not in it at all.

We attend meetings where the agenda is set by the organisation, the hierarchy.

We make our points, we challenge, we suggest, we want to “work with” to get change.

And we’re told…

Well that’s not altogether true…

We can’t do that…

Our staff are sick of action plans, we can’t do any more…

Staff are sick of innovation and change projects…

So we are squashed into submission, because of course we don’t have the power.

Most healthcare (and other) organisations are old power hierarchies. They do to people. They hand down directives and projects. Managers are trained to follow project management techniques scientifically.

They communicate with very few people. Just those staff who immediately above it below them in the hierarchy. And they all perpetuate their version of reality.

And they really don’t like people disrupting their hierarchies.

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So when I (or another disrupter) come along and challenge them, what happens?

They say you can’t possibly be right because you don’t have the knowledge that we have.

They say they won’t listen to you because you don’t represent anyone but yourself.

They decide that if they ignore you you’ll go away.

And they continue to maintain their closed loop hierarchy, in which they are cocooned away from divergent thinking and creativity.

Because they know best. They hold the old power.

I went to a meeting if a new group for people with lived experience of dementia last week, set up by the organisation to get feedback and suggestions on how they can improve the services they provide.

Quite a bold move, with quite significant commitment of funds for one or two years.

I applaud them. Bold and open…

During the day we split into two groups to discuss the agenda items they had decided for us. One group of family carers and one group of people living with dementia.

First they wanted to know what we thought of their service. But we hadn’t experienced it, because it’s for families where the dementia is advanced. So we said actually we don’t know really what you do.

Then we were given four statements which their execs wanted us to talk about in coming meetings. Which would we prioritise?

That’s where things fell a little apart. Because those statements were based on a consultation premise, not a co-design premise.

We said these are not where we would start. They needed to be re-framed…by us.

We’d rather start with…what matters to us? Not…what matters to you?

And it became very clear that we were disrupting the process.

In fact we rejoiced in calling ourselves the disrupters.

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I have found, with real pleasure, that almost all of the people living with dementia who I ever work with are disrupters. We promote and constantly remind…

What matters to us? Don’t did it to us, do it with us.

And we use our networks, which cross all sorts of conventional boundaries, to spread that belief and commitment.

We don’t have much of a hierarchy.

(There is a bit of one, with too few people being asked too frequently to be the person with lived experience. But we’re starting to change that.)

We depend for our energy and continuing activism on our networks of support. Facebook, twitter, blogs…that’s where the new power is growing. The occasional face to face get togethers are the invaluable glue which binds us together and re-energises us when we feel beaten down by the old power.

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So we are the disrupters.

Have a look at this slide set from the wonderful Helen Bevan, about disrupters and old v new power.

https://www.england.nhs.uk/south/wp-content/uploads/sites/6/2016/09/improvement-transformation.pdf

And watch this TED talk too.

I’ll end with part of a slide from Helen Bevan’s presentation:

WHO will make the change happen?

• The mavericks and rebels
• The deviants (positive). Who do things differently and succeed
• The contrarians, because they can
• The nonconformists who see things through glasses no one else has
• The hyper-connected. Good or bad, they spread behaviours, role model at a scale, set mountains on fire and multiply anything they get their hands on
• The hyper-trusted. Multiple reasons, doesn’t matter which ones

Source: adapted by Helen Bevan from Leandro Herrera