Carers are not always helpful…

Carers’ behaviours…interesting but difficult issues for people with dementia. From Kate Swaffer

bullyingSome time ago I attended one of the consumer forums where prior to the event it was not made clear the groups would be split into two; that is the people with dementia (PWD), and their carers/supporters of the people with dementia were separated. About 10 minutes before the end of the session, the reason why became crystal clear. One of the family members of a PWD came into our room interrupting our session.

We still had about four slides to comment on, but this carer rudely opened the door, entered, and refused to go our even though the facilitators of our group said we were not finished. This carer then talked over the facilitator, talked over us, and virtually and immediately shut us (PWD) up, effectively ending our session before we had finished.

Since then I’ve attended many consumer forums, and always, if we are workshopping topics in groups around the room with both groups present, the person with dementia says nothing…

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“I have choice and control…”

I have decided to blog part of an email I received today from National Voices, a great organisation that I have worked with a little that promotes the voice of patients in their care. Please take time to read it. It is applicable to all people, not just going people.




Dear George,

On Monday we launched My life, my support, my choice: a narrative for person centred coordinated care and support for children and young people with complex lives. The narrative describes critical outcomes and success factors in the care and support of children and young people, from their perspective and that of the people who are important to them.

The themes in the narrative – the things that children and young people say are key for them – can be summarised as:

“I am respected and listened to; I have choice and control; and at every stage I am supported to live a full independent life.”

Further ‘I statements’ set out in more detail what is needed to make this possible. They include:

“Adults around me do not make assumptions about what I can and cannot do.”

“I consistently see the same team of people who work with me and get to know me.”

“I am aware of the different types of support that are around me and how I can access them.”

“I and the people who are important to me have a named professional, who coordinates all the support we need”

My life, my support, my choice is endorsed by the national Children’s Health and Wellbeing Partnership, which provides system leadership for the improvement of health outcomes for children and young people.

We hope that, like the generic Narrative and other additional branches we have published, it will now be taken and used by commissioners and providers in organising person centred care and to know when they are achieving it. It can also be used by children and young people, their families and organisations as a tool to start conversations with local services about what good coordinated care and support looks like and how to work together to make it happen.

Here’s the link…

What have we done to our NHS?


What am I learning from the Patients in Control project work?

A lot.

I am still a teacher at heart, still the person who enjoys working out how best to facilitate learning and the changing of minds.

I’ve learned that I know a lot about the NHS, about structures and processes, and about how those in the NHS think. Though it’s never predictable.

I’ve learned that there are lots of people working in and with CCGs around the Midlands and East who “get” the proposition about designing services that enable and empower people to be in control of their health and their day to day lives.

And that there are some people, less, who don’t get it at all, and see healthcare as a paternalistic model where they are at the top of the hierarchy, and patients way beneath.

I’ve learned that a lot of people are waiting for someone else to take the initiative, to provide leadership, to “give them permission” to do things differently. They want to but they don’t think they can. They see existing structures as barriers, tight finances as handcuffs, contractual processes as how we have to do things.

And of course there are plenty of people whose enthusiasm is carrying them into innovative territory, where ideas are welcomed, nurtured and brought up into real, transformative projects. People who see opportunities, not blockages, reasons to do things, not reasons not to do them.

I’m seeing people who seem to be in a state of bewilderment and apparent fright, who are staring into headlights at…what?

And I’m seeing people who know that things have to change, and that only they can make this happen, locally. That they cannot going on doing the same things and if they want to get different outcomes.

I’m meeting very few people who say they know how effective the services they commission are. Most readily admit they haven’t a clue. So when we suggest decommissioning the ones that don’t produce good results they don’t know which these are. How can they change the way they spend money to co-design new ways of supporting patients and carers when they don’t know where funding can or should come from?

I’m learning that some CCGs want to get straight on with some small, ground breaking projects that will address specific areas of ill health. Like high amputation rates in a geographical diabetic population.

And I’m learning that some CCGs only see the big (often financial) picture and don’t know what the small things are that are happening in their own patch.

I’m learning that there are some CCGs where senior members appear unengaged, perhaps tired, perhaps fed up, perhaps unable to see any solutions to apparently intractable problems not of their own making.

And there are others where everyone really interacts and discusses ideas, listening and challenging each other positively and constructively.

I’m learning that sometimes great ideas come from unexpected places. Like the finance manager who really understands what patients in control is all about and why it is important to do it. For the people as well as the finances.

I guess these organisations are no different from lots of others. Except…

These people have been thrown together to manage the spending of hundreds of millions of pounds, and the health care of hundreds of thousands of people. Few are entrepreneurs. Few are strong leaders. Most are managers and clinicians. Some are lay members who bring different skills and experience but who don’t have organisational knowledge of how to make things happen in the NHS and can be understandably naive.

And now all these people are running very large businesses which have frozen or diminishing income, rising numbers of ever more demanding customers, and a shortage of trained people to produce the “work”.

Is this really the way to ensure efficient spending and great outcomes for people?

I find it easy to be encouraged when I meet the enthusiasm and energy of some groups. But this can turn to despair at the turn of a calendar page.

What have we done?

What can we do to change this?

A consultation…

How’s this for the GP?

How’s this for the patient?

How could we change this for both?


GP: Good morning. 

(Looks at screen) 

(Waits for patient to start.)

Patient: I saw you a few weeks ago about angina and chest pain and my diabetes. You said to come back if I have concerns or things get worse. And I’ve made a list of things I want to talk to you about.

One condition at a time per appointment please.

I’m worried about my diabetes and blood sugar levels due to increasing foot pain in recent weeks. I think I need a blood test to check HBa1c level. 

Ok let’s take one condition, one issue. This is just one appointment slot.

Your last blood test was only four months ago. You’re not due another yet.

Yes but in the last few weeks I seem to have got worse….my feet ache, and they burn and go cold and hot in the evenings…it’s really uncomfortable.

Have you seen the podiatrist for a check in the last year?

Yes. That seemed to be ok, but he wasn’t interested in my foot pain. He just said I could still feel stimulation so he’d see me next year.

How’s your diet? And exercise?

I’m not eating anything sweet or sugary. So not a bad diet really. 

You do need to do more exercise and make sure you eat sensibly.

I do walk but less than I used to. The thing is, my feet ache, so walking can painful, and I know it’ll be worse afterwards. And I get very very tired. 

Well, exercise will lower your blood sugar levels, so you really need to walk as much as possible.

I used to be able to walk up hills, mountains. But now some days I can only manage half a mile. And working outside at home there are times when I just have to stop for the day. It’s probably my heart not working as well as it used to, I suppose.

You could talk to our diabetic nurse… Make an appointment. 

Last time I met that diabetic nurse she took my blood pressure, weighed me, told me to take exercise, and entered things on the computer. And she said that if I had any concerns about sex and that sort of thing I had to talk to a doctor not her. She didn’t really do anything at all to help me or listen to me.


(Looks at screen)

I’m sorry you didn’t like our nurse. You can always choose to see someone else next time.

Her job is not really doing emotional support…that’s more like mental health…I could refer you for counselling. There’s a twelve week wait, but I could put you on the list.


Pause. Silence. GP looks at screen then at patient.


Another thing…

(Doctor looks at screen…tuts….sighs…)

Can this wait until another appointment…it’s just that there are a lot of patients waiting…

My dementia symptoms are getting worse…more symptoms of memory and perception difficulties…what should I do? Is there anyone I can talk to about it?

You know, your dementia will of course get worse. It can not get better. So you need to accept that. 

There will be good days and bad days, or weeks…

I could do another GP cog test to measure any deterioration, but you’d need to make another appointment.

I don’t think I need another cognitive test. I know I’m getting worse. I always score ok on the test.

And if you are still doing well on the test that would show that actually you are still doing well.

But I don’t feel as if I’m doing well.

I spoke to someone from the alzheimers Society last year and they said I could ask you for some emotional support, or something like that.

I don’t really know about any groups in this area for dementia, and we don’t have any admiral nurses in this county. You could try finding a local branch of Alzheimers society.

Why don’t you have admiral nurses? I’ve heard they are really good working with people with dementia and carers. I just want some advice from someone who understands what I am going through.

Why don’t we have admiral nurses? I don’t know, and I don’t make those decisions. 

Anyway, you can talk to me. I have known you for a few years.

Well I wouldn’t mind talking to you about how I feel. I need to talk to someone. And at the moment I just think about it and worry, and get fed up and wonder what’s going to happen next.

Well I can’t really give you emotional support other than just listening to you. And I’m not sure that would really help much. Would it?

Ok, so go back to reception and make an appointment to see me again. But I’m not sure I can be of much help in your situation. There’s really very little that can be done for people with dementia.

And a new appointment will take how long? Two to three weeks? Like this one did.

Look, I’m sorry, but if you want to see someone urgently it’ll have to be a different doctor.

But a different doctor doesn’t know me like you do.

I’m sorry, I need to get on. Please make another appointment.


Is this fictional?

How do you think the GP felt about this?

And how dos the patient feel?

What can we do to change this?

I just tried to get into someone else’s car


Well, I just tried to get into someone else’s car.

Not on purpose, of course. Just walked out of a store, stood beside the wrong car, and pulled the handle.

Luckily the alarm didn’t go off, and no one was inside.

What else? Oh, I read the wrong story to a seminar the other week. Got halfway through and began to suspect it was going in the wrong direction. Tried to think through what was going on. Why was it the wrong one? What should I do? Read on? Stop and admit?

I stopped, apologised, got a laugh, and improvised the rest.

I’ve driven round one or two roundabouts a couple of times too…big ones, really big ones with multiple offloads and too few signs. 

And I’ve started using thingamajig a lot more. You know, the thing that does that…the sort of lever type thing…what’s it called….?

I’ve been talking to people about having a diagnosis of mixed dementia quite early on in the disease.

Yesterday a person told me it was good to meet and talk to someone who is living well with it, rather than seeing the usual image in the media, people in care homes nearer end of life, who have lost a lot of cognitive ability.

She had read that two out of three people now think they will develop dementia at some stage. And they’re frightened. Perhaps this is because of the awareness raising and the media images. 

What is it at the moment? One in a hundred? Of whom just over half are diagnosed. 

But fear is the key. 

We can live well for a long time with dementia, so there is no rational reason to be frightened. I’m not a gibbering, drivelling wreck, with my pants on over my trousers, wandering around in a daze! But you might expect that from the media.

Mind you, sitting in a well known coffee house I am being stunned by the amount of noise…my brain is at overload, trying to cut out the noise of cups, saucers, conversations, muzak…

I’ve been wondering why time has slipped by so fast in the last year. The days just disappear. It’s the end of the week, then suddenly Monday again…then the next month. I mean I welcome the spring…really found this winter depressing…but time is just slipping away.

And I think it’s because my awareness of time is dissolving. I arrive at meetings late more often, because I become less able to judge how long it’ll take me to get ready to leave the house. I sit and drink tea and read on my iPad, then drink coffee, then this and that, and sit a little more…plenty of time to wash, dress, take pills, shave, do the washing up, feed the hens, put the cats out…and suddenly it’s too late. 

Time just disappears. Not my memory as much as awareness of time and events. 

I am meant to be doing shoulder exercises several times a day. I’ve got notes up to remind myself. I just don’t do them. I remember to do them when I’m in bed, on the toilet, sitting here in a cafe…but when I am in the right place I just forget. It leaves my awareness or consciousness. And I don’t do the exercises.

I’ve apologised to the physios, which have been pretty understanding and nice about it. I’m really sorry. 

Yet when I’m focused on something, like my Patients in Control seminars, I am on song. I can find the information I need in my brain quickly when I have already found the right area.

Except, of course, when I choose the wrong story to read…

Here it is… MY expert opinion.

Someone has upset Kate, but she is quite right, of course. Patients should be treated as equals and partners in their care and in the development of innovation and improvement.

expert 1It seems the ‘experts’, namely those people who work in a field, but may not have any personal experience in that field, are always considered and called the experts, and the patients or consumers who are living with the experience or disease are often treated like morons or idiots, as if they have no expert insight or understanding of that topic or sector.

This of course, has happened in the dementia sector, even though people without dementia have no idea what  the lived experience is actually like. I am regularly asked to contribute to state, national and international work on dementia, and most of the time, my previous knowledge and current qualifications are ignored, and I am written up in the final report or communique as a patient, person with dementia, or consumer.

This is totally unreasonable, and offensive, and it is time all people with dementia started to request their qualifications…

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Reasons why we can’t


Listen, that’s not how we do it here. You’ll get used to it after a while.

If you do that for them, everyone will want it. What’ll happen then?

If we do it for one we have to do it for all. Otherwise it won’t be fair and equitable.

If we ask patients what they want they’ll say free gym membership, or a trip to Barbados. We can’t do that.

Give people their own budgets and they’ll spend them on cigarettes, drink, films, clothes…

Give people their own budgets and when they’ve spent them they’ll come back to us to be looked after. Chaos and wasted money.

If we spend money on that, it’ll save money for that other organisation. We spend but they save. Why would we do that?

It’s all very well, but there are rules we have to follow. Governance, accountability, transparency…we’ve got to follow process.

Look, I treat conditions not people. I haven’t got the time to talk to patients about their lives. And I certainly can’t do anything about them.

We’re doing all we can to stay afloat. It’s up to the others to take actions to help us.

We haven’t got time to look over the horizon. We’re too busy.

It’s time to pull up the drawbridge, draw a line in the sand. They’re just not doing anything to help us. We can’t go on like this.

We didn’t create these structures. It’s not our fault.

If we do that, what do we not do instead?

But where’s the evidence?

What if a patient makes a bad choice and gets worse?

We’ve always done it like this. Seems to work all right.

Listen, we’re under so much pressure at the moment, how do you expect us to have time to look at introducing more change?

Shared decision making? Patients just want to be given a prescription or a note. They don’t understand anything else.

I do share decision making with my patients, but they never remember that this has happened. They say they were not involved.

I could probably go on and on and on…

As Branson said…

“Screw it, let’s do it.

Let’s have a shag


So I arrive at the hotel, chest, legs and back aching. Dear old Google maps had taken me nowhere for ten minutes.

“After 100yds turn left”.

Yes? After 100 yds in which direction? Please? Tell me.

A kind man agreed with me about the usefulness of the app to the walker, and pointed where I should go. Round the corner I saw a huge monstrous carbuncle sticking up on the horizon.

Coventry is undergoing a bit of remodelling, at least near the station. It needs it.

There are some lovely parts, I am sure, but this was not.

So I arrived at the hotel (carbuncle) and was (eventually) directed to the first floor for the meeting.

The lift (eventually) arrived. I stepped out into a hotel corridor, with several choices but no signage. Doors everywhere, narrow corridors, deserted…

I wandered around.

This was nothing to do with dementia. I am confident anyone would have found this foggy, unhelpful place annoying.

But it was a metaphor for dementia, yes, and for Coventry (at least the parts I saw).

No signposting.

No one to support and guide visitors.

Was I really in the right place? (No visual or other clues)

Some labels did appear end the corners…Jaguar Landrover…Efficiency Distribution…but none for NHS or Patients in Control.

I did, of course, find the room. The door was open and familiar faces and voices were inside. (The label for the room was wrong! They changed it after everyone had arrived.)

So I walked up to Vince and said Hello, let’s have a shag.


Smiles, hellos, laughter…make light of it…

What I of course meant was either shake (hands) or hug (each other). But my befuddled brain got it wrong. A little.

And that’s what happens when I lose control of conversations, surroundings…

I did a lot of shagging during the afternoon. It’s the new greeting for us.

Hi, let’s shag.

People generally would not know I have dementia. I have been really busy in recent weeks, and things have gone well. I’ve felt more confident, driving, talking, meeting…as long as I am on home ground or known and prepared subjects. Off piste…I shag.

Here in sunny Shropshire, where the lambs and daffodils are out, and we live in a pastoral idyll, things seem to move slowly for dementia change.

Small steps which you think are getting somewhere, gaining traction…then you slip on the mud and start again. I’m not going to change the world, but I want to see more progress before my old brain fuddles and mushes and I retire into the greenhouse.

It’s an honour and pleasure to work with some of the people I meet…and those running the Patients in Control project are no exception.

Wrapping services around patients is a no brainer. Putting patients in control of their lives enables them to live better – even well – with their conditions.

We’re trying to show CCG commissioners that providing services in different ways, co-produced with patients and carers, produces many benefits for everyone…

And it has to be whole system stuff. Not just health providers. Solve a person’s housing and debt problems and they’ll call 999 less often. Reduce another’s loneliness and they’ll have less admissions.

There are places where this is starting to happen. And the Vanguard projects will be the test beds for this transformation. But we cannot wait long. Shropshire, and others, have to get on with this work across borders and boundaries.

We all need to work together to make change happen.