Do you care?

Let’s start with a question…

Do you care?


When people care things happen.

When people care they make things happen.

And When people have personal linkage to dementia they really care, and they get involved, and make things happen.

You all have personal linkage and you all care. And you all are making things happen.

You are a social movement.

Social movements are about people who care getting involved and making things happen.

“Never doubt, said Margaret Meade, that a small group of thoughtful committed citizens can change the world – indeed it is the only thing that ever does”.

We are disruptive.

We have to be disruptive.

We don’t like the status quo.

We don’t want to fit into what others have decided is right for us.

We’re a challenge to existing structures and authorities and power holders.

And they don’t like it much. Why don’t they like it?

And what do they say to our disruption?

They’ll ask the impossible.

It’ll take too long and I haven’t got time.

Patients don’t understand.

How can one person speak for all? We can’t trust the word of one person.

We’ll lose control.

We’ll ask the patients what they think after we’ve written our plan.

A man called Michael Ignatieff once said, “There are few presumptions in human relations more dangerous than the idea that one knows what another human being needs better than they do themselves.”

Well, please, do nothing about or for us without working with us … all.

Why are established care systems as they are?

Why is there no parity of care and spending between mental and physical health?

Dementia is probably still regarded as a mental illness, and is therefore locked away in a drawer or behind doors along with other mental health.

Is dementia a mental illness?

Hands up.

Is it caused by organic disease?

Yes. Therefore is it not physical disease?

Is it caused by physical changes in the brain?

Yes. Therefore is it not physical disease?

Who operates memory services?

Mental health trusts.

Who provides the crisis care for people living with dementia?

Mental health trusts.

Who doesn’t get parity of funding?

Mental health trusts.

NICE assess whether the NHS can spend money on drugs and procedures based on qualys. A qualy is the value of one year of decent quality of life.

It’s worth £30,000.

But it’s only worth £30,000 a year for each year added as a result of the treatment.

You may be wondering Where am I going with this?

Drugs for early to middle stage Alzheimers don’t extend life.

Social support for people living with dementia does not definitively extend life.

So there are no qualys.

So there’s no justification for commissioners to spend money on us.

Because it would only increase our quality of life, not lengthen our lives.

As I said, there is no parity of care.

Someone needing a hip replacement, or a bypass operation has an automatic entitlement to the best care the NHS can provide. And rightly so.

With dementia? you get a diagnosis from an underfunded mental health organisation, wrongly called a memory service, and then you are cast adrift.

Ask us what we want, what we need…and we won’t ask for the earth.

We just want – and should be able – to live as we choose.

As Chris said, it’s about not living well with dementia.

It’s about living as I or you choose.

So, be the change you want to see.

Be disruptive.

Challenge the status quo.

Get in on the inside.

Be a stone in their shoe.

Don’t let them forget you’re here.

True innovation is disruptive.

The straitjacket of established attitudes and models must be cut away.

Our social movement is irresistible and together, and with passion, we will succeed.

This is the text of my speech to the wonderful North Wales Dementia Meet-up on 23.11.16

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