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

Moral Dissonance

We invest in cancer care because it’s the right thing to do, and because an added qualy year of life is worth £30,000.

But we’ll only invest in dementia care if we can prove savings as a result, regardless of quality of life.

This is Moral Dissonance.


14 days to see a specialist.

31 days to diagnosis.

62 days to treatment.

Near enough anyway, and admirable.

When I was told I had what looked like kidney cancer I wanted to know quickly.


They said it was highly likely to be slow growing and non-aggressive, and they would recommend monitoring it rather than going through the trauma of nephrectomy.

But I wanted it out. At 64 and with other diseases I didn’t want to risk having a serious operation later when I would be less well than now.

And it turned out to be aggressive.


If I have colon cancer they’ll treat it within 62 days. Why?

If I gave breast cancer they’ll treat it within 62 days. Why?

Is it because they’re calculating savings in future years that will be greater than the now cost of treatment?

Is it a good financial return on investment?

If drugs are involved, I’ll get them if the cost is less than the predicted qualys I might live for. My life is worth around £30,000 a year apparently.

Basically, I’ll get treated for cancer because people “up there” have decided that it is morally and financially right to pay for me to live longer.

Oh and because there’s loads of sexy research and jobs and companies and money to be made in cancer treatment.


If I have dementia…and I do…I will get a diagnosis eventually, as long as I am lucky enough to see a GP who can see the point in diagnosis. And a memory service that has short waiting times…which I do.

I spoke to someone last week who’s wife waited eight months for a memory service appointment!

If I have Alzheimers dementia…and I have…I will probably be given a drug to counteract the effects in the early to middle stages of disease. Won’t stop it…but it does often speed up your brain cells.

If I have vascular dementia…and I have…I will continue on my statin and hypertension drugs, because these should slow down development of the disease. But not reverse it.

Now I may live…and I’m not sure whether to add “hopefully” here…for ten years or more with the disease developing and knocking out my brain.

“They” can’t yet cure me, or indeed significantly stop the disease.

What would my qualys look like?


Well they’re not qualys are they. Because they’re not extra years of life.

They’re better years of life.

Living as I choose, as well as I can, continuing my life as it is, meeting people, socialising, travelling to meetings, walking the dog, watching birds…

What’s that worth?

Is it £30,000 a year?

What would it cost to help me do this?

£30,000 a year?

No. Nothing like.

As my disease develops I’ll need some help.

Some transport.

Perhaps an hour a week with a “companion” to help me and my carer navigate the nefarious and unhelpful systems.

A reminder pill dispenser and a white board. And a large orientation clock.


Then maybe some remote technology so someone can monitor my whereabouts, my falls…

Is that £30,000 a year?


Is it the right thing to do?


Keep me independent and happy as long as you can.

Keep me out of hospital.

Keep my carer fit and happy too.

All for, what, a tenth of a qualy?


But what do commissioners want as justification to spend on dementia care?

For every extra pound they spend on dementia care they’ve got to see £1.01 in reduced costs elsewhere.

It’s got to pay for itself.

By that standard I’d still have my cancerous kidney inside me.

In fact we could save the NHS billions.

Don’t treat cancer. Prescribe pain relief instead.

The public would go for that wouldn’t they?

If we humans think we can do something, we want to it. It’s what humans do.

If think we can cure cancer we’ll try. And frankly we’ll spend a fortune doing it.

Breast cancer, with metastatic secondary five years later? Adds five years average. Cost around £175,000. We do that don’t we? Of course. Five extra years of reasonable quality life. Continuing to do what you choose.

Well, we may not yet be able to cure dementia, or even arrest it, but let’s for goodness sake sound a small amount enabling 800,000 people today in the U.K. living with dementia to continue to live their lives as they choose, and to enjoy their lives as long as humanly possible.

It’s not all about return on investment, is it?


Spending money to treat cancer gives qualys. It extends life years. We spend it.

Spending money to improve life with dementia does not extend life years. It improves life quality. We don’t spend it.

Which is better?

Which is far less expensive?



We were discussing a survey of inpatients’ experience in an interesting meeting. When would be the best time to send out the survey questionnaire?

We could give it to patients while they are in the hospital, i.e. in their beds.

But we know that patients are fearful of telling the truth while still being cared for in the hospital.


And we need to give them time to reflect on their experiences.

So we could give the surveys to patients at their follow up outpatients appointment.

But this can be between six weeks and a year later.

We could send it out within two weeks of discharge.

Then they would have time to reflect but still remember in detail their experiences.

“Can carers complete the survey?”

Well, not really, as we want the patient experience.

At which point one wag exclaimed loudly…

“Well there’s no point in sending it to any patients on ********** ward as they’ve got dementia. They won’t remember anything.”



I looked around. A few faces turned towards me.


But we need to know about all patients, including the those with dementia.

“Well my mum has dementia and she can’t remember being in hospital a month ago.”


Me snarling. Red cheeks. Flexing hands and knuckles under the table.

I said, well, everyone is different. Every person with dementia is different, and is at a different stage…plenty of us remember lots…we’re not corpses!


He said no more…

The meeting wound on. I gradually relaxed again.

This is not a surprise to many. But it is really awful.

My points are the same as what we say in Dementia Friends sessions.

Not everyone on that ward has dementia.

Each person with dementia is entirely different, with different symptoms.

Each person is at a different stage of their journey.

Dementia is not just about memory…


This person needs to do the dementia friends awareness!

And what you don’t know is that this person is employed to go round the wards talking to patients.


There’s a long way to go…even in the NHS.

But that’s the first time for a while that I have got so annoyed at such uninformed, ignorant, insulting rubbish.


Please let me not be ill this winter

Dulce et decorum est…

So this year I decided UK Congress was a step or two too far in Brighton. And expensive, what with rail and hotels.

But I’ve been getting the tweets. So I know many of my friends and fellow activists have been there. Speaking out, listening, exchanging experiences and ideas, regenerating, recharging…

I saw on Twitter today a list of all the things that Chris Roberts has been doing, thoroughly deserving his award for best dementia activist, or whatever it was. How the hell do you do it?

(Jayne…you’re great.)


Back in Shropshire…we’re working on our new co-produced model of…what?…for people living with dementia and carers, in Shropshire.

Is it care? No. It’s more like enablement. Everything that should be put there for us, available to all of us, known about by all of us, accessible by all of us…

I was at a Healthwatch Shropshire meeting yesterday, entitled working together. We had various system leaders from the local health economy…

They almost all told us that there is great work in Shropshire.

Neighbourhood integrated teams for health and social care are being developed…

Lots of dementia cafes and peer groups…

Futurefit acute remodelling to go out to consultation next month…


Futurefit is in tatters and likely to be delayed again, possibly abandoned.

There’s been no progress in developing community based healthcare in the last three years.

No more than 5% of people living with dementia ever access the support groups and cafes.

So let’s cut the crap.

There is of course great work out there, especially the commissioned dementia advisers but, again, these advisers work with a small percentage, because they don’t get enough funding for more.

Wherever I go, and whether it’s about dementia or other healthcare, or social care, it’s always the same, the same old lie, as Wilfred Owen put it in Dulce et Decorum Est…

It’s sweet and fitting to die for your country…


We’re doing lots of great work to support people living with dementia…our social care services are really transforming into partnership working, and enabling local communities to work together…

Yah Yah. jaw. jaw.

The STP that will include the care and support provided for people living with dementia is secret. No collaboration. Spending is being cut in social care by 75%.

The NHS is falling apart. I watch and work alongside staff here who just cannot cope, who go home in tears, who become sick, trying to provide care for us.

It’s not their fault that our local leaders are incapable of innovation, transformation, clarity of thought, and co-operating. What did someone say yesterday?

The STP is a temporary suspension of hostilities between organisations who hate each other.


For god’s sake, people are dying unnecessarily in A&E. It’s unsafe. You ain’t got enough consultants. Do something. Get balls.

Patients with dementia are being put on wards which are totally inappropriate.

Did they know winter was coming this year?

I know, it’s odd. And I’d love summer to last longer. These dark evenings, cold, frosty, windy this weekend, wet…

This afternoon I was on the Aldi car park putting the shopping away. In the dark. Cold. It’s absolutely horrible.

But the seasons do tend to come and go in a fairly predictable rhythm.

So at the acute hospital we have a winter planning group. Ward moves this weekend, to create forty new beds. An escalation ward in a day surgery building. Promises of maximum numbers of patients. They’re doing their best?

We know it’s all lies…”the old lie…” Owen said…

Numbers will escalate because…well, because managers will put people there.

It’s time to stop. Say no.

Humankind only solves difficult problems after the crisis has happened, when disaster arrives.


Looking down the barrels of a gun concentrates the mind.

So say no. No more.

I told a meeting, patients would prefer to have operations postponed than be in an unsafe, chaotic ward. And that’s what will happen.

Despite the best efforts of wonderful nursing staff.

I think all health care managers should have to have had a minimum three day stay in hospital as a condition of employment. And probably an enforced ward stay, every year.

New appraisal target. There you go. Radical. But pound for pound a fine investment.

ROI? 1000%

At least visit the wards. See what you are doing to them.

Sod the targets. Sod the NHSE. Sod NHSI.

It’s about people, patients, and safety.

When it breaks people will have to mend it. At the moment they’re all either praying, or looking away.

Boards, gird up your cahones…say no. No more.

There are a huge number of people at exec level paid a lot of money who need to say…

No more.

We’ve been pretending for a long time.

Execs toe the line. The party line.

They tell us what they want us to hear. It’s ok. It’s safe. We’ll get through. We’re doing a good job in difficult circumstances.


No more.

I could cry. I do cry.


I’m an activist. I work to improve what I feel passionately about.

I take the long view. You don’t change the world overnight, or all at once.

Eating an elephant is a slow project, but I’m getting up the first leg.


Yesterday I went to an end of life conference at our acute trust: “one chance to talk”.

It was moving, informative, world changing for people dying and their families….

Fabulous speakers…passionate activists…social change agents…doctors, nurses, AHPs, carers…

I’ve said to a few people recently…looking around my local trusts…

I see wonderful work, wonderful care, wonderful staff…and

Chaotic, unsafe care, inadequate staffing, confusion…

And I pray that I won’t be ill this winter.