We are the Disrupters

We are the disrupters!


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.


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.


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.


So we are the disrupters.

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


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

What matters to us?

So yesterday we had our monthly DEEP meeting in Shrewsbury. Just four of us, but a great opportunity to chat and joke and chew things over.


And one of the things we talked about was a group that meets bi-monthly in Shropshire and Telford to oversee the development of dementia care/support. A steering group. And on it, for the last three meetings, we have had three people living with dementia…including me. The rest of the group is professionals in health or social care working in the area.

A few months ago the group agreed that we should have more than just me representing people living with dementia, so I invited in two from our DEEP group. And they’re great. Keen to participate, keen to share their experiences, keen to say what matters to them.

Only trouble is, and I’ve found it elsewhere, the professionals don’t know how to include us.

Now I know the system, the NHS, and most of the people around the table. My two colleagues do not. And they cant think and decode and formulate ideas as quickly as the others.


Now DEEP has very good rules of engagement for these meetings where people living with dementia are involved. Speak slowly, be as visible as possible, be loud enough…don’t interrupt or speak across others…and use cards to signal you want to speak.

We didn’t do any of these! So guess what…my friends said nothing and didn’t understand half of what was said.

I would add, for fairness, that they were offered support from someone sitting beside them to explain things, although the meeting did not slow down during this. And there is a standing offer of an hour’s training and introduction before meetings. But this has not been taken up. They probably don’t remember! And I’m not sure that I’d want to give up another hour to be talked at about what is about to be talked about.

So what are we going to do about this?

Well, we talked about it yesterday and I found out just how strongly the other two really feel…like they’re there because a rule says they have to be there, like they’re ticking a box…like no one actually wants to hear them.


So I think next time we should start with the question “what matters to us?”

What matters to us in the meeting? What matters to us in our lives?

What do we want that is not there?

But we’ve already decided that.

DEEP groups matter to us.

We’re not far on in the disease, so what matters is the opportunity to talk to each other, without our family present, about how we feel, what we’ve done, how we cope with things…because the worst thing is losing your confidence to go on doing what you want to do. And to be you.

Caregivers often finish our sentences. Or choose a menu for us. Or answer questions before we can summon an answer. That saps confidence. It saps your being. It reduces you.

Being around other people at a similar stage is incredibly helpful. It recharges you.

But there are so few groups.

We need a group in every town. Where we set the agenda. Or probably don’t have an agenda!

It’s incredibly cheap to make these happen. But they need someone to organise them.

Easy win for retaining independence, community involvement, and living as well as we choose.

And probably delaying use of health and care services.

At the next meeting we’re going to make sure they ask us and listen to us. And that we set the agenda for our health care and support.


That way we will get the support we need, rather than what professionals want to give us…or endless apologies for not being able/willing to afford services.

Above all though, don’t invite us and ignore us. That really is insulting.

You don’t mean to insult us. You just don’t get it.


Something different…it’s about you!


When does fun(draising) spill over into sexual objectification and exploitation?

And what does objectification mean anyway?

Recently you may have read about the Chief Exec of a Shropshire NHS Trust refusing to accept £2,500 donations raised at an annual bed push in Ludlow. The reason? The men pushing the bed were dressed up in drag as nurses.

They were of course no ordinary nurses. They were pantomime nurses, yes with bra or lace or short skirts, etc. Silly wigs. Heavy makeup.


The CEO thinks this is demeaning to nurses. Local Shropshire people disagree (96% in a poll).

So I was minded to meditate on this. Or philosophise. Or something.

By the way, the money was to go towards an ECG marching in the community hospital, and the event has been help annually for twenty years.



Is dressing up as a pantomime nurse an insult? Or demeaning?

Is it demeaning of the person/role that is derided?

Is it implying a stereotyped sexual attitude?

Is it humiliating to the person/role that is portrayed?

Is it about suggesting that every person working in the nurse role portrayed dresses and behaves like the men in drag?

I think in this case the objection to men dressed as caricature nurses must be that they lead us to believe that all female nurses are like these portrayals? Unkempt, ragged and a little skimpily dressed, joke characters to be taken as jokes.

Well, if the sight of men dressed as caricature nurses makes you think all nurses are like these you probably already have an excessively warped and misguided view of female nurses. I don think a bit of drag fun isn’t going to warp you!


Is humour that uses stereotypes acceptable?

What about the mother-in-law jokes?

Or the chartered accountant Monty Python jokes?

(I admit that I was training when those jokes were around and they made me cringe with embarrassment. I was determined not to be boring and silly. Not sure if I succeeded.)

What about the carry on films, and the pantomime characters?

Perhaps you are demeaned if you feel demeaned? But lots of personal history and experiences go into how we react and feel about things we see and hear. So that’s highly subjective and unreliable as a test.

Does a man dressed as a woman demean the woman? (Or perhaps the man?)

I think one test is whether the portrayal is caricature or realistic?


If it is caricature, it is obvious and visible, and not subtle or subversive. Caricature is usually comic, and often designed to make a point, usually critical. It has one of two purposes…either to make you laugh or to make you question something.

If the portrayal is realistic, it may be designed to deceive you into doing or thinking something.

In other words, if it’s realistic how do you know if it’s true or false? If it’s caricature you know it’s not deceiving you because it’s obvious,

There are some cultural stereotype jokes in every society. They are frequently found in pantomime and stand up comedy. The buxom, bossy mother in law, bronzed medallion man, sexy nurses, officious traffic wardens, and many more.

Should we outlaw these as incorrect and unacceptably demeaning? Or laugh along?

Do these jokes make us behave adversely towards these stereotype roles in real life when we meet them? Perhaps occasionally.

Do the jokes make the people actually carrying out these roles feel upset or angry, and make them change how they dress and behave? Perhaps occasionally.

Should we therefore make use of stereotypes for humour unlawful?

That would stop legitimate ways of criticising the behaviour of politicians, businessmen and others through humour? Should we ban cartoons, novels and films that use caricature and humour to highlight and criticise?

I think not!

There will always be people who are offended by others, by jokes, by cartoons, by stories, by behaviours. Perhaps because they have raw personal experiences and feelings that are touched. Perhaps because the implicit criticism is a bit too close to them for comfort.

Fundraisers use lots of ways to attract attention and therefore money. Sitting in a bath of baked beans, having wet sponges thrown at your face, dressing up as clowns or… nurses?

Are drag artists insulting to women? I think not. You don’t have to like them or enjoy their acts. But if you feel insulted by them I think the problem is yours not theirs.

One last thing, is this offensive?


Find the point!


I think I’ve written before about surrounding yourself with people who are positive and make you feel good. And keeping away from negative, miserable rudery.


I’ve been a bit down for a few weeks, on and off. You might have guessed.

My various illnesses get me down at times. And then another chip comes away, usually a piece of tooth.

Yes. I was having an Indian. They left a bloody stone in an olive or something in the spicey stuff.

A quarter of a tooth broke off. Again.

Turns out to be £620 crown work needed.



I’ve spent thousands on recent years just keeping enough tooth and metal and porcelain in my mouth to be able to eat.

And it just adds to the growing and daily depressing list of things to put up with.

But, as a GP once said, what can’t be cured must be endured.

Yeah. Thanks for that. You may be right, but it doesn’t help a lot.

So, yes, it gets me down. And it probably gets you down too.

So I’ve been working slowly towards doing what we all should do.

A plan for living well. For coping. For making life worthwhile.

So the other day I sat down for an hour to start scribbling.

I’d taken Lupin for a nice gentle, warm walk around nearby fields.


Watched and photographed some ploughing. (They took the rape off last weekend.)

Let the dog run wildly around, leaving a dust cloud behind her. Racing pointlessly around after…who knows what?


Where, then, do I start?

What gives me real pleasure?
What stops me from doing these things?
What can I do to make it possible to do them?

What do I absolutely need to do?
What is inescapable?
And which do I actually have a choice about?

What do I want to do before I die or become incapable?
This year?
Next year?

What do I do that I don’t enjoy?
Why do I do these things?
What would happen if I stopped doing them?


So I’ve made a start.

The next stage is probably harder. Actually stopping doing some of the things.

Thus, for example…

What will I lose if I stop being Chair of the DAA?


What will I lose if I stop chairing the acute hospital patient panel?

And what will I gain, of course?

It’s a really intriguing position. Because I’m scared of being lonely and unneeded, and being at home thinking…if only…

But I need to do what gives me pleasure. And makes me get up in the morning with a smile of optimism.

I’m not going to share what I wrote down. That’s private.

But you should do this. And sort out what’s left of your life.

And enjoy it.

Life’s too short to be dull, to do things that drain your optimism, that make you depressed.

And that make you think…

What’s the point?


Who am I without my name?


“How may I live without my name? I have given you my soul; leave me my name!”

Thus spoke John Proctor in The Crucible.

“Who am I without my name?”


Am I my name?

Am I what people think of me?

Am I my reputation?

Am I what I own? Where I live and what I drive?


Or am I what I think and what I do?

Cogito ergo sum. I think therefore I exist.

Am I what I say? Do my conversations define me?

In which case, who am I when I can no longer find words and put them sensibly together?


Who am I when I lose control over my life?

When I can’t make decisions?

Or when they are taken away from me?

Who am I then?

Do I cease to exist when I am unable to decide what I want?


What makes humans different from other animals?

I think it is that we can think about more than just self. More than survival.

And we can engineer things, create ways of doing things, ways of improving (?) our lives.

We have language. And with words you can think things that you can’t think without words.

You can empathise. Imagine. Explore. Create magical feelings…with words.

You can think regret, or relief, or joy, or anger…

You can dream of things you might do, mountains you might climb, people you might hug, sights to see, seas to swim…

I’m no philosopher, but I wonder if without words you can still dream, imagine, explore, feel…

I think you can. And I think later stage dementia is about feelings without words.

I’ve already, recently, had an experience of total brain fog…blank…whiteout. And I assume that it is what happens in later stage dementia. When parts of your brain really don’t work.

Brain failure, as Alastair Burns puts it so well.

It seems to me that there is good evidence that happy experiences improve both the mood and the behaviours of people living with dementia, even though they may not remember the events.

That is the theory behind reminiscence, activities, singing, etc.

These things change behaviours, calming people for several hours.

They may not have words at that stage, and they may be in a fog, but they feel better, happier. So they get less agitated, angry and frustrated.


So, to return to the beginning, who will I be and how will I feel when I can no longer find words and make decisions?

The answer, I think, is that I’ll rely on other people to take me to places I can no longer find.

But in the meantime what I ask is that you don’t take away from me my decision making until I really can no longer do it.

Let me make mistakes, and misjudgements, unless it’s dangerous to other people.

I don’t want to live in a bale of cotton wool, feeling nothing but safe and sound.

I’d rather fall off a cliff, or drown, trying to do something that makes me feel good, than live to a ripe old age, waited upon and wiped clean, lost and wordless.


Someone said to me the other day that the early stages of brain disease must be worse for the person than the carers, but the late stages worse for the carer, because the person living with dementia won’t be aware of anything.

I wonder.

If you get agitated and angry but can’t express it in words, it must follow that you don’t need words to have feelings.

How long do you continue to have words in your mind after you become unable to say them to anyone?

After all, advanced dementia is not persistent vegetative state. If you can display feelings through behaviour you are not in a coma. But you are trapped.

I think we are mistaken if we assume that a person without words is a person who is unaware of their situation, or is a person who has lost their right to live with dignity, compassion, and warmth.

And I think that people with advanced dementia are still people who deserve and need our respect and support.



A speech to General Practitioners

There are around 5,000 people in Shropshire living with dementia, of whom about 3,500 have been diagnosed. Some 2,000 live in care or nursing homes.

And there are 240 living with young onset dementia, of whom about 50 have been diagnosed.

I’ve estimated that around 10% of the 3,000 in the community ever access support from groups like diamond drop ins, or dementia cafes. Another handful meet in peer support groups.

So what support do I and those like me have? And what do we want?

We have occasional meetings with staff from the memory service. Pretty much when they choose, not me. I can contact them if I want.

I meet my GP now and then, but he’s no specialist, and it takes three weeks to get an appointment, so any immediate but not acute needs tend to fade away by the time I get there. And there’s no time for a proper talk.

I can meet a support worker from Alzheimers Society, but there’s only one for all the northern half of Shropshire. That’s going to be about 1200+ people to each staff. And they’re not promoted by general practice or the memory service.


There are peer groups, self organised, in Oswestry, Shrewsbury, and Market Drayton, with no funding, and supporting about 25 people. I’m developing a number of Deep groups, like the one I started in Shrewsbury, but without support and promotion by general practice it’s very difficult for people to know about these. I started one in Church Stretton, but it wasn’t promoted so only one person came. I’ll try again in September.

People living with dementia lose their confidence to go out, to continue to do what they enjoy, and what keeps them active.

We don’t want activities for just people living with dementia. We want to be part of our community. In walking groups, at the pub, singing, bowling, shopping, painting, flower arranging, gardening, travelling, chatting. Alongside everyone else.

Where do we get information? How many people can use, or even know about, the community groups index maintained by Shropshire Council?

The DAA started the Shropshire Dementia Roadmap, and Shropshire Partners in Care paid for it for the first year. But we couldn’t get any support from the CCG to help maintain it or pay the fee, so we’ve had to drop it. It would have provided a huge source of national and local information for general practice and everyone else to use to support people living with dementia.

How do we find out about assistive technologies that help us maintain independent living?

How do meet our peers, and people at the same stage as us (note, stage not age) to chat, share experiences, and help each other.

And you may ask…do I have a shared living plan? No. I have a piece of paper that my memory service sends me after my meetings, which states what the nurse said and what she thinks I ought to do, like don’t take risks , don’t do too much…


Do I have a plan I discuss with my GP? No. Never.

So what happened to that? We need to sit down with someone and talk about what makes life worth living, how to be resilient, how to be active, and how to get medication right!

People live with dementia for many years. It is now the leading cause of death. 25% of all hospital inpatients live with dementia and spend three times as long in hospital as others. Inpatients living with dementia often never return home again after discharge, because they are disabled by hospital stays, risk assessments, and lack of support in the community to return home.

Last year Healthwatch Shropshire led a project to co-design a new model of support and care for people living with dementia, and their carers, in Shropshire and Telford. It was funded by the Public Health department at the council.

About twenty people were involved, including carers, people living with dementia, Shropshire and Telford Councils, both CCGs, and SATH, and of course Healthwatch.

Five groups met to evolve a model across five strands…preventing well, diagnosing well, living well, supporting well, and dying well.


A feature of this model is the use of Dementia Companions to provide support, information, sign posting, assistance and advocacy for people living with dementia and their family carers, from diagnosis to…death.

This model is being introduced in Telford this year, with a pilot in Newport, and wider roll out later.

We really need Shropshire to invest the modest sums required to make this work here too, as there is very little support at the moment. So we really also need you to lobby your member organisation, the CCG, to invest in it.

On another note, I chair the Shropshire and Telford and Wrekin Dementia Action Alliance, or DAA. This is a coalition of around fifty member organisations and businesses across the area, all signed up to work to become more dementia friendly. Our members also offer numerous dementia friends awareness sessions, and we have around 12,000 dementia friends in Shropshire now.


We have two GP practices signed up as members, and we would really like more to do so. And Care homes as well. Sign up is quite simple, and requires a few commitments to usually inexpensive changes. Like staff training, having a staff dementia champion, improving signage in your buildings, and perhaps lighting, and changing patterned flooring.

These small changes make huge differences for people whose brains are not processing visual and auditory information very well, or who may need a little more time and explanation of things.


Walking the (black) dog

Of course, you all know, Lupin is not black.

Lupin is the most luxurious chestnut light brown you can imagine.


But right beside her is the black dog. The one that lopes along, mostly hidden in Lupin’s shadow, the one that leaps out now and then, without warning.


You’d think it might have got tired of dogging my footsteps by now.

You’d think I might have learned to shut it away, lock it up, kick it up the arse.

But no, ever so quietly, it lopes along.


And waits.

I was at the Alzheimers Show in London two weeks ago. A medical expert gave a talk about dementia. And the bit that really struck me, and stuck with me, was the fact that dementia (brain disease) causes an imbalance of chemicals in the brain.

A high proportion of people living with dementia also live with depression. They don’t have enough acetylcholine in their brains. Or seratonin. Or something.

Well, I’m one of them. If I get my depression meds wrong I am a mess. And I do. And I am.

And then I get the old black dog leaping out. In my face. In my head.

And everything annoys me. And everyone annoys me.

Today I went shopping in the local little town supermarket.

Well first, there were loads of cars on our narrow overgrown lane, half of whom could not reverse. Once is fine. Twice is painful. Thrice is a bashing.

Then the supermarket was busy and bustling. People chatting, kids, well, being kids. And the checkout boy holding a conversation with the next one up, about some idiotic family argument or something.

Oh my God. It was just overpowering. I felt like I my head was encased in a pudding basin of noise and interference.


(Without the syrup sponge or spotted dick to enjoy.)

Yesterday my wife took me for a surprise to Manchester, to the Halle Orchestra. It was a one hour concert of loud, lively, orchestral and choral works. And it was fabulous.

But all through the journeys to and from Manchester I could not hear what Jane was saying, and needed repetition and clarification every time.

Guess what? When I went to bed I found that I had not turned my hearing aids on.

F..k, f..k, f..k.

How one earth could I forget that?

I hope the black dog will have hidden back in the shadows tomorrow.

Because I hate shouting at the brown one.

I think we should all be very aware of the depression that overtakes many people living with dementia.

If you’ve got a chemical imbalance you need meds to correct it. Or you drive yourself mad. Or worse.

It’s not bad to be on anti-depressants if you need them to function properly.

It’s not something to feel guilty about.

Any more than taking donepezil, or any other medication, is intrinsically wrong. No, it’s right.

There are people who will read this and think (and possibly write) that I should use alternative remedies, relaxation techniques, faith…

Well sorry folks…give me the pills. I haven’t got time to try things out which have no basis in evidence.

So I’ll continue to walk Lupin and stay on the sunny side as long as I can.


And hope the black one stays hidden away, in the shadows.

Oh my gladioli

As the song goes, it’s nine o clock on a Friday night…play me a song, you’re the piano man…

And it’s time to write a blog.

And we’re in for a very hot weekend.

The flowers I am growing for my elder son’s wedding are coming well, and should be in bloom in a month, on time.

I have had a fascinating two weeks, with a speech to Shropshire disability network and a workshop at the Alzheimers Show  with DEEP, about what is good for my (our) wellbeing.

And yesterday I was at a new patient co-production network design group in London talking about how we would develop the network in the future.

So, yes, I’m busy. Or, as I said to a swimming and dementia friends colleague today, I have been just doing stuff. Without which I would be bored.

What was striking about the six of us in London last week, who all have young onset brain disease (dementia), oh my gladioliwas that we all said our diagnosis gave us new life.

Yes, it’s shit.

Yes, it’s bereavement.

Yes, it’s the road to nowhere.

But we all, unrehearsed, said we now do things which we would not have done without the diagnosis.

It’s a sort of release from those last ten years of managing to stay in your job. Struggling to survive. Wanting to do other things, those dreams.

We just have fun. Or write poetry. Or walk. Or cycle (a long way). 

We are not sad. We are not doomed. We are not imprisoned.

We are released.

Bit like “when I am old I will wear purple”.

It’s a release.

Why the hell does it take brain disease and impairment to allow us to be able to just do what we want?

It’s like being a hippy in 1967. Flower power.
Do you remember that fab song, Are you going to San Francisco? Scott Mackenzie, I think.

And Woodstock.

I feel liberated. Free of the conventions and rules that govern people.

I don’t have to wear a suit every day. Or acceptable shoes. Or organise maternity cover. Or negotiate with a member of staff who arrives late every day. Or find ways to get rid of staff without sacking them. Or do the monthly time sheets.

No, I can walk with Lupin up a hill. Talk to a stranger at Colemere with a husky cross rescue from Indonesia. (Yes, true.)

I can grow flowers for my son’s wedding. And have a beer with him. And get measured for tails.

Yes, I make mistakes. I find I have not taken a certain pill for a few days. Or I’ve lost (thrown away) my shoes. Or I fall over. Or I wonder which way to get back from the toilets.

But I tell you what…I’m right on the money if I have time to prepare my brain. 

I’ve recently been doing some work to establish a new network of people/patients with long term conditions and life changing diseases or disabilities across the country, to promote co-production in healthcare.

We are a small group, head-hunted (no less), and I just find the other people involved wonderful to be with.

So enthusiastic, so knowledgeable. Diverse. Driven by values, and all committed to influencing change in the NHS.

I have had issues with the patient leader programme. It started a few years ago with an open access training programme of six sessions. Self-selected membership.

And many of the patient leaders from this programme were anything but leaders.

But our new network, which we are still designing before launch, will be different.

It won’t be a hierarchical organisation.

It won’t be a free for all.

And it won’t accredit just anyone who chooses to sign up.

What it will be is a pool of people with the skills and values to lead or take part in co-design and co-production around the country. 

We will introduce a new paradigm for patient engagement.

We will be equal, respected partners with paid NHS staff.

We will be valued because we will bring about shared solutions that are equally beneficial for patients and providers.


I also recently met the commissioners for mental health services and dementia in Shropshire to talk about why on earth there is so little worthwhile support for people living with dementia here.

Post code lottery.

After lots of detailed explanations, it became clear to the three of us that if there was no money available we would have to create ultra low cost solutions. Community based.

So, we will work to set up a county wide network of peer support groups, for mental health and dementia illnesses, and to develop co-production with providers for the services WE want.

The reasoning is that if the commissioners are (for one reason or another) unable to change their pattern of spending, we service users should combine to work with the provider to change what they provide to what WE want.

Co-design. Co-production. Service users at the heart of services. Personalised care.

You name it…we want it. And it doesn’t need to cost much. 

If we mobilise we can get it.

The impact of dementia

This is an edited version of a speech I gave today to the Shropshire Disability Network.

Dementia is a generic name for symptoms resulting from brain disease.

Depending on what the disease affects, your brain may shrink, neurons may tangle and stop transmitting, and very specific functions may work less well or not at all.

There are well over one hundred different diagnoses for dementia, the most common being Alzheimers, vascular, dementia with lewy bodies and frontotemporal lobe.

But everyone is affected differently. Everyone’s symptoms are different.


Once you’ve met one person with dementia…you’ve met one person with dementia.

In my case….about six years ago I realised I was having difficulty organising my work, remembering what I’d said to whom, at which meeting, forgetting names, taking a little longer to explain myself.

I was working part time, having resigned from a full time job with stress. My doctor assessed that I was stressed. And that my cognitive impairment was related to work stress and depression.

I had visited the memory service when I was unable to work full time, and had a brain scan. But the diagnosis at the time was depression and stress.


Later, in my part time work, I started to use my own iPad for recording and organising everything I did. Every conversation was noted, every meeting summarised. Every appointment recorded. There for me to check regularly and frequently. I managed.

But I could not grasp the explanations of a complicated system that my team used in their work. Time and again they explained and I just could not get it. And remember it.

Eventually that job came to an end, for complicated reasons, and I asked my GP – for the third time – for referral back to the memory service for assessment for dementia. My wife and I knew that I was not functioning properly.

I remember having to have silence in the car trying to navigate in France on a family holiday. I could not work anything out if there was music or conversations going on. That has not changed!


It took a day and a half of tests and a brain scan to come to a diagnosis of mixed dementia….Alzheimers and vascular. You see, I have a fairly high IQ, a degree and professional qualifications, and I compensate for my reduced functioning. So most people don’t think I could possibly have dementia.

They say…”well if you’ve got dementia I must have too. I lose my keys all the time. I can’t remember people’s names.” Etc etc.

You see, people think (and I include GPs) that dementia is about memory difficulties. And they think you only get the brain disease that results in dementia when you’re old, in your seventies and eighties.

So, what is the impact of this brain disease on me and others who live with dementia?

I do have difficulties with words, especially with people I don’t know well. I can’t process incoming signals as fast as you, and it takes very little distraction to put me off my stride.

Hence, I can’t have music and conversation at the same time, or TV for that matter.

If you ask me something I’m not expecting I may not be able to answer. I have to be zoned in. I have to find the bit of my mind that I need for a particular reason. Then I’m ok. It takes time for my brain to find a route through to the memory or the thought that I need.

You see, if you’ve got billions of cells in your brain, billions of neurons that link up in billions of different patterns to create billions of memories and calculations, if a few million go down it might be a very small proportion, but that tiny, particular function will not work as well or as fast as before.


So you slow down. Conversations have pauses. Listeners have to give me time to work out what I want to say and then say it. I tend to avoid starting conversations with people I don’t know at parties or meals together because I can get foggy after the usual cliches. And if they ask me about me I can stick completely.

I find I make mistakes judging distances, steps, changes in floor level. Dark patches or stripey patterns fool me and I may lose my balance, or miss a step. Or just feel discombobulated.


Occasionally I lose touch with where I am. Disorientation. The first time it happened I was shopping in Aldi. For about ten seconds I hadn’t a clue where I was. Then it came back. Doesn’t happen often thankfully.

I cannot fix names in my memory. Well. I can sometimes fix them, but many names just won’t stick. So, a PA at SATH recently told me her name several times in the space of one afternoon. I tried and tried to fix it. But it just went. Flew away. And there’s a plant I cannot remember. Euphorbia. I have to find ways round to find it. Or just point to it and wait for my wife to complete the sentence.

I have almost lost my sense of smell. That’s both good and bad. I would love to smell the freshly cut grass at home, and flowers and roses, or damp woodland, walking with my dog. But I also cannot smell the less attractive smells…which I’d better not name.


What is the impact of brain disease on my life?

Unlike a person I met recently (who ought to have known better) I don’t regard it as sad. It’s not ended my life. It’s not a death sentence.

It has merely slowed me down a little. I can still do everything I could four years ago. But I do now make choices that I wouldn’t have thought about before.

For example, if I can I avoid crowded places, like noisy restaurants or pubs or parties. I prefer to invite two or four friends round for a meal at home, where I can control the environment and can talk and listen easily.

If I do have people around when I’m cooking I ask them to go elsewhere while I cook. I can’t think about what I’m doing and have loads of noise and conversations going on around me.

I don’t drive in the dark. It’s to do with lights in my eyes, and flashing, which just disorientates me.

But the biggest impact has been through meeting a lot of lovely, enthusiastic people who also live with dementia and work to raise awareness and improve support, around the country. I really enjoy meeting up now and then, perhaps in London or North Wales, or Shrewsbury.

I feel excited to work to improve life for people living with dementia. It’s given me a new challenge and every time something goes well I feel tremendously pleased. And vindicated.

Because sometimes you can feel quite alone, and it’s really important to be reminded that others think the same and are working to improve life for people living with dementia.

Twitter and Facebook are tremendously helpful in sharing information and keeping up with what’s happening around the country.


I am lucky. Really. I got my diagnosis quite early on in the progress of my brain disease. So I have lots of time to do things I planned for later in life, and to be active and engaged in the community.

I don’t regard it as sad that I’ve got dementia. It’s shit, but it’s just life, just like getting cancer (which I’ve also had) or heart disease (which I also have).

I’m not always optimistic. Far from it. I have black days. Black dogs. But doing stuff to improve people’s lives is mostly rewarding and even fun.

I’ve started two DEEP groups, in Shrewsbury and Church Stretton. These are just social meeting groups for people living with dementia to meet, chat, share experiences and information. And to have someone listen to them.


The impact of these brain diseases on many people living with dementia is disempowerment. One or two people who come to the DEEP groups speak of being told they are useless by their family members, or having their wives speak for them all the time. I see men just stop talking because they have given up, and they know their wives will just take over. Or not wait for them to find their words. When we meet away from family and Carers we open up. We share what we actually feel. Often frustration and bloody annoyance.

Of course, it’s not easy for spouses or other family members. It’s bereavement. For both sides. But we really need to provide support for people living with dementia, and training and support for their spouses and families. There’s a great little training course called “getting along” which I’m hoping to bring to Shropshire soon to help couples get over these difficulties.

Now let’s think about disabilities.

Let me quote from a DEEP guide to dementia and rights…called Our Dementia, Our Rights.

“Many people find it hard to think of their dementia as a disability, and are understandably reluctant to take on another ‘label’.
The fact is that dementia is counted as a disability if it causes “a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities” (Equality Act 2010).
Likewise, Article 1 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) states that “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments, which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.”
The word ‘disability’ is therefore not a stigmatising label imposed upon individuals. It is just a means to an end, a tool.
Another group–people with mental health difficulties–don’t consider themselves as disabled either, but they have made very good use of the UN Convention to claim their rights.
So, even if you don’t think of dementia as a disability, the law does define the impairments it may cause in this way–and this can be to your benefit.”

I don’t think of myself as disabled.

There are things I cannot do as well or as easily as ten years ago. And my symptoms will get worse. There’s no question about that.

But am I disabled?

I say no. I still have plenty of abilities. I am able to do whatever I want. I can take risks. I can cook. I can walk up hills. I can shop. I can work with directors of NHS trusts. I can speak at conferences, organise DEEP meeting groups, chair a patient panel at an NHS Trust.

It just takes a little more effort and organising than ten years ago.

But I do think that the legal definition of disability is important because it allows people to use the law to influence change. So I accept that I am, by law, disabled, because that is the way we people living with disease or physical impairment can get equality of access and treatment.

But please don’t let “disabled” define you. Disabled is just a word that allows us to get some benefits (though that’s increasingly difficult) and to be guaranteed certain rights.


Intrinsically, we are not unable to do things, to live our lives as we choose.

We simply are not perfect. But, you know, no one is.

Everyone has impairments from perfection. Whether it be intellectual or physical.

I want everyone in Shropshire and Telford to simply be accepted for being people. We have incredibly diversity.

I hear people say, time and again, “of course, we don’t have diversity in Shropshire”. What they mean is, we’re 99% white Caucasian.

But we are all different. Every person with brain disease is different. Every person has different physical abilities. Every person has different life experiences, memories, family memories, personalities…

We have phenomenal diversity. So let’s celebrate diversity in Shropshire and Telford.

We all lead our lives. We all make choices. We all take risks. And we all have huge amounts to contribute to the community.

I welcome our differences. And I won’t be defined by dementia.