Here’s my elevator speech to GPs

Why should your practice become dementia friendly?

People who live with dementia, diagnosed or not, and their carers, need support to live as well as they can. You probably have between fifty and one hundred patients over 65 with a diagnosis, and up to another fifty who have not been assessed. You also probably have two or three younger patients living with undiagnosed young onset dementia.

People living with dementia have difficulty making and remembering appointments and therefore miss appointments. They need reminding.

Then they have to get to your surgery. They may have to wait for thirty minutes or more in the waiting room; this is unfamiliar and disorientating, and may may increase confusion and agitation.

Can patients affected by dementia book easy access appointments so they don’t have to wait when they arrive? This would avoid agitation and DNAs.

Are your premises decorated in a warm friendly colour scheme? Are floor coverings unpatterned? Is your patient toilet dementia friendly, with a contrasting colour toilet seat and colour coded taps?

People living with dementia need clear signage in places that are unfamiliar. They benefit from specially designed signage, with good colour contrast, large lettering and use of symbols.


People living with moderate to severe dementia often have difficulty explaining their pain and symptoms. They may be unable to tell you what is wrong. They need extra time and use of simple techniques such as touch and pictures or diagrams.

A person with dementia may think your staff are attacking them when they attach a blood pressure cuff, or prepare to take blood or examine them. Your staff therefore need to be trained to be aware of this and the techniques they can use to get round these perceptions and behaviours.

Customer facing staff, ie all your clinical, pharmacy and reception staff, need to speak slowly and clearly, without being patronising, and make sure they look at the person with dementia when they speak. They also need to ensure that the person is looking at them. They need to be aware of likely behaviours of people with dementia and the causes. Aggression or rudeness is usually the result of confusion and agitation and not deliberate. Behaviour is only “challenging” to the person who does not understand.

Carers find it hard to get support and can find themselves at the end of their emotional and physical tether. Do you know which of your registered patients are carers? If this was recorded and flagged you would be able to make every contact count by asking simply if they are ok and coping, or if they would like some support, perhaps by talking or help accessing respite.


I can help you develop your practice to be dementia friendly. I can organise dementia friends awareness sessions for all your staff. I can walk around your premises with you and look at improvements that could be made. I can signpost you to contacts and resources to help you.

Becoming dementia friendly and aware, you can support your patients to live as well as they can with the condition and stay as healthy as possible, and you can increase understanding of dementia in the community. You will also help carers to remain healthy and fit and able to provide the good, loving care they want to provide.

It’s not expensive. It doesn’t have to all happen at once.

Why wouldn’t you want to do this for your patients and your community?


Very much able to live…

Good morning everyone.

What a wonderful event. It’s a privilege to be able to talk to you today.

I live with young onset dementia. I was diagnosed in 2014 at the age of 62. I chair the Dementia Action Alliance which now covers Shropshire, Telford and Wrekin.

There’s a lot of talk nationally about Dementia Rights at the moment…

But Let’s start with some myth busting.

Is a person living with dementia disabled?

That is the question. What do you think? Hands up.

Is a person living with dementia covered by the equality and diversity scheme? Hands up.


Is dementia a mental illness or a physical illness? Hands up.

Does a person living with cancer have the same right to good timely health care as a person who has had a stroke?

Does a person living with dementia have the same right to good timely health care as a person who has had a stroke?

Does a person living with diabetes have a right to live a good life?

Does a person living with dementia have a right to a good life?

Does a person living with dementia have the same right to use public transport as a person with cancer?

And so on…

Are you with me? We have all built up stereotypes and cliches around health and illness and these dictate how we think. To be aware of these misperceptions is to change them.

So let’s move on…
How do you define “right”? What is a “right”?

Is it a moral right…because we ought to care for people in need?

Is it an ethical right?…because it would be wrong to single out a sub group of humanity for inequitable treatment..

Is it a legal right?…because the law says people living with dementia should get the same access to treatment and care as others?

Does the NHS Constitution specify that people living with dementia have a contractual right to timely, safe, respectful care?

Well…I think all of the above, actually.

Should people living with dementia have the right to live well?

I don’t hold with the phrase “living well with dementia”. It’s not good…it’s shit. It’s a one way journey and you know what’s probably coming towards the end. But that doesn’t stop you from choosing to do things that make you happy. That make you feel you’re doing something worthwhile.

Let’s change living well to living as I choose. Not as others choose for me. Not as others allow me to live.

There’s a phrase coined by Kate Swaffer who lives with dementia in Australia. It is “prescribed disengagement”. It applies to what often happens when professionals talk to people with dementia about what they should or can do with the rest of their lives.

Don’t tire yourself. Avoid places which might be confusing. Don’t take risks. Stop driving. Avoid crowds. Avoid stress. Stop doing the things that you find difficult.

Prescribed disengagement…from life as we know it!


And absolutely the wrong thing to do. Keep engaged socially. Take risks. Live.

So what then are the difficulties and barriers related to health care for people living with dementia?

Making an appointment. Getting to a GP surgery or to a hospital. Explaining your symptoms and history. Again and again.

Explaining your pain. Deciding whether you want treatment, an injection or blood pressure measurement…being able to say no. Choosing your menu. Needing time to think, to process thoughts and sensations and perceptions…

Finding a toilet. Recognising a toilet. Knowing where you are, what time it is.

Disorientation in unfamiliar surroundings. People you don’t know. Strangers causing you pain and distress.

Do patients who live with dementia have a right to understand, to make choices, to toilet themselves, to eat food they like?

Yes, of course they do.

If you have cancer you get superb treatment and care. If you have a stroke you get specialist care and therapy. We know these help recovery or survival.

But Dementia is different. It does not go away. You don’t recover. You die. But not for a long time usually. You’ve got plenty of time to live. Historically…and, shamefully, still alive and kicking today…there has been a hide-them-away attitude. Out of sight out of mind.

And, as a GP once said to me, if it can’t be cured it must be endured. Why waste money and time on a disease we can’t cure? Why get an assessment and diagnosis if there is no cure? There’s no point in you knowing.

Well I’m here to tell you…there is every point in knowing. And there is treatment for many forms of dementia to reduce the impact for years.

Those who develop young onset dementia, under 65, and there are around 240 in Shropshire, have a diagnosis rate as low as 20%. For older people it’s 70%. Why the difference?


Well I’m betting it’s because when a 55 year old says they have memory difficulties or that they get stuck in sentences, or disorientated in Aldi, their GP puts it down to work based stress and depression. As they did with me.

They don’t think, ooh, I wonder if it’s dementia…the symptoms are suggestive…let’s just do some tests. No. They give you antidepressants and perhaps some CBT and send you away.

But IT doesn’t go away.

So we young onset people fail to get the medication which would keep us functioning better. And we don’t get that precious time when we can still do those things on our bucket lists. And make wills and powers of attorney and advance directives.

Because later on it’ll be too late.

We just keep flogging on at work, hoping it’ll get better.

And at work, how many employers will make adjustments, provide equipment like an iPad, or find an alternative role, for staff who develop dementia?

Yet do we not have a right to employment, to a satisfying life, a fulfilling life?

Yes we do. Yes, yes, Yes we do.

It is time that we all change how we respond to people who are different from ourselves. Doesn’t matter whether you’re gay, bisexual, Romany, Egyptian, Catholic, female, or you live with dementia…you all have a right to live as you choose, and to be allowed to do so. And to access good quality health care when and where you need it. Some people just need a little more help and understanding than others in order to do so.

Why wouldn’t you want to give this?

For me, equality is not about everyone getting the same. It’s about every individual getting the care and support they need, and being able to live as they choose. And it’s up to all of us to make this happen.

I believe that we can do this. Yes we can. And yes we will.

And to return to the question I posed when I started…

Are people living with dementia disabled?

No. We may have some difficulties with living from time to time.

But we are very much able to live.


(This is a talk I gave in Shropshire this week.)


Who’s afraid of Virginia Woolf? Or Dorothy for that matter

VReflections on patient-NHS partnership working


I’ve been to a workshop today to talk about revolutionising (or do I mean achieving?) real patient-staff partnership working in the NHS. Oh it was so refreshing and energising to be in a room full of people who get it, and who work hard to do it.

I like this name – partnership. In fact let’s go a step further…equal partnership.

For who is the expert? The patient/carer or the doctor, nurse, manager, director?

Who knows most? Who has the right skills? Who has the loved experience? Who has felt what illness feels like?

Well of course no one is an expert and everyone is an expert.

And who has the power in these relationships?

And who wants to retain the power in these relationships?

Several people today talked about reminding themselves when they walk into a meeting with a doctor that it should be an equal and respectful relationship. But we do have to remind ourselves, don’t we?

I still think I must not take up much of the doctor’s time and fail to ask and discuss questions I should ask and discuss. She’s in a hurry. She’s got a queue waiting.

And when we are in a meeting with clinical or managerial staff about services or experience we still usually feel we are there by gracious condescention. And we mustn’t challenge (rock the boat) too hard or we might be turfed out.

How does the other side view us? Genuinely.

And for that matter, before you shout at me, should we really have to talk about “sides”, like in a battle? It might feel like that sometimes, but it shouldn’t need to.

How does the other side see us? How do they feel about us being at the table?

Do they feel vulnerable? Ready to be shouted at? To be told they do a crap job? By people who don’t understand the pressures they are under?

Or, do they think what a great opportunity to learn whether what we do is the right thing for patients and carers? How can I work with this person to share our perceptions, our experiences, our preferences and our choices?

How can we get from the first to the second? As someone said today, sharing vulnerabilities honestly in meetings resets the tone and hides the baggage. We can get on with the task, find a solution together, rather than fighting our corner and blocking change.

And then, what else gets in the way of partnership?

Trust? A key element of a financial or business partnership is trust. Without it the partnership fails, is dissolved.

We have to be people who can be trusted.

And so do they.

It’s two way.

Trusted to be polite, confidential and honest.

Trusted to listen, respond and reflect.

Trusted to challenge courageously and with commitment.

Trusted to make mistakes and learn from from them.


So let’s not be afraid of each other. Let’s not take sides.

Let’s work together because we want the same thing.


With gratitude to all you who contributed to this today.

Delay Future Fit take off

Future Fit healthcare remodelling in Shropshire…we’re not finished yet.

Here’s my attempt to unravel the tangle we’re in. Being no angel, I can risk treading in this thrashing pool of frustration.

I have just finished reading Matthew Syed’s brilliant book, Black Box Thinking. It has helped me bring into focus thoughts that have been in my mind for some time. So credit where it’s due.


Three years ago our healthcare leaders in Shropshire and Telford and Wrekin launched what they called a “call to action” to remodel the way healthcare is provided here. Three years later that action has not yet happened…not even started. It’s still a plan that has been rejected by different parts of the community, professional, political and lay.

What Syed writes about is fundamentally the unwillingness of people to accept that what they said was right, or what they did, was, or may have been, wrong. Even when evidence proves them wrong. They find reasons why the evidence against their case is not sufficient, or is irrelevant. They will reinterpret what has happened.


One key reason is that in a culture where mistakes are criticised and people blamed, to make a mistake is to face blame.

Another is that if those making decisions…or giving us medical care, or flying our airplanes…are seen to be wrong they fear we will not trust them. They will lose credibility.

Thus, there are numerous examples of organisations that have made a particular choice, for the best of reasons (in their view), that have been reluctant to change their decision in the light of evidence and challenge. These organisations usually fail. They press on with their plan even as they see contradictory evidence mount, because to change would be to admit they got it wrong.

They then attack the evidence that shows they’re wrong. It’s irrelevant. It’s flawed. We know better.

And they fail.

Well, Future Fit is now in this place.

Of course those leading the work believe their model is the right one. They have got their clinical evidence, and they have financial modelling. But they have not gone far enough.

Another essential element in Syed’s book is the need when designing a new model, device, factory, whatever, to test it to destruction. To test, redesign, retest, redesign…until it works. And you know it works. To reiterate time and time again, each iteration improving a little on the previous.

James Dyson did this over 5,000 times when first designing the cyclone vacuum cleaner. Those who stop redesigning too soon fail because their product contains flaws. And customers will soon stop buying the product with flaws.

Syed also said that asking experts…mathematicians for example…to solve a problem does not always find the best solution. A theoretical solution based on known theory and evidence does not allow for the infinite variables in any given situation, so again design, test, redesign is necessary. And don’t leave it only to experts.

(I hate saying this in view of recent political statements…)

How is this relevant to Future Fit?

The current preferred solution is to locate an Emergency Department (ED) in Shrewsbury, with most planned care in Telford.

The capital cost of the preferred model is around £311m. The SATH chief executive has recently said this is affordable. But there have been clear statements from government and NHS England that capital for the NHS is greatly restricted. The pot is being raided to replace reduced revenue funding elsewhere. Equally, the latest news is that capital will be prioritised for Trusts that meet (or better) their control targets, i.e. the deficits agreed a few months ago for 2016/17. SATH will not meet its control target; it is running a much larger deficit.

Around the country, the Sustainability and Transformation Plans (STPs) are being based on huge capital requirements for remodelling assets. And they are being told no. Why is Shropshire different?

The preferred model for Future Fit is not supported across the geographical patch. Politicians support ED in their patch, but not in others’. So MPs are vocally supportive as long as they get ED (and votes), but shout foul if they don’t.

The model is said to have been developed by clinicians. But it has been rejected by clinicians…the GPs in Telford…on the grounds that moving ED and the Women and Children’s unit to Shrewsbury will not meet the clinical needs of the Telford community.

The model is predicated on shifting a significant proportion of medical care into the community, out of acute hospitals. The shift can only happen if community and primary capacity and skills are significantly increased. But the model for this shift has not been worked out. So how can we know it will be possible? Our GPs do not like the Future Fit model precisely because they have no capacity for increased workload. Our Community Trust is bailing out and looking to be taken over, because they do not have the funds or capacity to continue what they do now, let alone expand.

The financial modelling in the Future Fit plan demonstrates that the capital outlay of £311m will bring more than proportionate revenue savings, even after paying back the dividend each year to the government. However, these financial assumptions have been called heroic. They are predicated on huge cost improvement plans (CIPs) that have been achieved by very fewTrusts in recent years. The likelihood of these savings coming to fruition is very low.


So we have a preferred model which is not supported by all clinicians, not supported by all politicians, which is based on very flimsy financial forecasts, and which is dependent on community and primary care that does not have the capacity to deliver it.

Why are we where we are?

I believe that Syed’s analysis helps us understand.

The model has not been sufficiently tested, iterated.

We have not been sufficiently creative and challenging in evolving the model.

Evidence has been used selectively to support secondary clinicians’ and financial experts’ opinions.

Syed describes a process whereby a team would be told that their plan had failed, before it had been started. The team then has to provide reasons why it failed. In this way the flaws in the plan are exposed in time to be adjusted before it is put into action. And the process works.

I doubt this has been tried here. Because even sitting here I can come up with numerous reasons why this plan will fail.

The core reason why iteration has been stopped, and the plan put forward as “must do”, is that leaders involved cannot face that the model is wrong. They say, no change is not an option. They say, we have to do this now.

But it is self evident that the model is wrong because it has been rejected. And to fly on in the face of being told it’s wrong is to, well, crash the plane.

The worst thing now would be to implement a model which appears to provide a solution but which will crash within years because vital elements cannot be delivered.

Those people involved in the project, if they read this, will probably dismiss me as a non-expert. They will say the evidence supports their model.

I’m saying, let’s test it to destruction now, before it is started. Let’s bring in more ideas. Let’s bring challenge. And let’s listen, reiterate, test, reiterate, and test again, till we all agree.

Let’s put aside professional egos. Let’s welcome failure as the way to learn.

Let’s be robust. Let’s not pretend that guesstimates designed to fit the model are reliable or credible. They’re not. They’re creating “evidence” to fit a model.

It may have taken three years to get here, and of course there is real urgency to reform healthcare here, but the worst thing would be to start something which will crash. At a future enquiry the leaders would justify what they did, but they still would have failed.

One reason for it taking three years is that the Future Fit “team” has been at pains to consult over many aspects of the model, before the model was developed and before the evidence was “created” to allow informed debate. Another is the two year creation of the “evidence base” to support their model.

They’ve been desperate to appear to be reasonable and evidence based, but they have been selective. Early on, clinicians decided what they wanted, and then “experts” were sent away to create the evidence to fit this model. Now they cannot face climb down. They have created a position where they are bound to fail because they have shut out other possibilities and challenge, and they have not tested their model to destruction.

Let’s avoid a plane crash. Delay take off, review, reiterate, wait for a better plan that demonstrably will work.


What You Hear in Dementialand

Get to the middle section about processing noise. Really important.

When Dementia Knocks

This is the fourth in a five part series about dementia and the senses.

Today we will focus on hearing.

Like many spouses, my husband occasionally points out my weaknesses. Like many spouses, I often become defensive when my husband points out my weaknesses. However, he did once (and only once, obviously) note a weakness that I realize is valid.

Here goes…

I’m okay at explaining something to someone for the first time. My weakness is re-explaining it when they don’t understand my original explanation.

Let’s say I’m explaining a concept to a student. Maybe I’m talking about the genetics of Alzheimer’s. Perhaps I use language that the student just isn’t able to understand.

“I don’t get it,” says the hypothetical student.

Here’s where I go all wrong…I struggle to understand what exactly the student isn’t understanding, and I explain the genetics of Alzheimer’s again–using the same language and…

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What You See in Dementialand

Very interesting insights into perceptions and dementia. Everyone should read it and use it.

When Dementia Knocks

This is the fifth of a series of five posts about the senses in Dementialand.

Today we focus on sight.

An entire book could be written about how dementia changes how an individual sees the world. I want to stress that dementia itself does nothing to impair the eyes. Dementia, however, does make it more difficult for the brain to interpret what the eyes see. It is the visual-perceptual system that becomes damaged.

Sometimes I will spend time with someone who has dementia and think that their words and actions make little sense. It is only later that I realize that they were making perfect sense considering their experience of the world. It’s just that their experience of the world and my experience of the world are different. And that’s the challenge.

A couple of years ago, I was doing an informal activity with a small group of nursing home residents when…

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