Tell-me-More about Stroke Services--Improving Care through Narrating Experience

8/13/2019 Tell-me-More about Stroke Services--Improving Care through Narrating Experience

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The project Tell Me More about Stroke Services was undertaken for the Isle

of Wight Stroke Club in May 2009.

This was also part of the Isle of Wight Primary Care Trusts Stroke

Improvement Programme which started in 2008.

The Stroke Club also commissioned Pilgrim Projects to develop some digital

stories with stroke survivors which are available to see separately.

The Tell Me More interviews were undertaken by Stephanie Stanwick

and Noemi Fabry from Enterprise for Communities and are illustrated

here by Jess Wilson.

Stephanie and Noemi would like to thank all those interviewed who were

so open in telling them about the important elements of their experiences.

These interviews took place in peoples own homes and were transcribed.

The illustrated kernels reproduced here are all faithful and authentic to the

individual telling the story. Other key points are summarised in themes in

The Message Board.

The final element is some Reflections by the authors about how these

experiences could help improve stroke services on the Isle of Wight.

The aim of this unique approach is to describe for others- stroke survivors,

carers or clinicians - the problems people can face in their road to recovery,

so they in turn help develop and improve the services local to them.

A Word of Introduction:

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I do remember being wheeled down and put into a scan machine I think it was and there

after days were a bit of a blur. I slept a lot during the day, was woken up for a pill once a day

and eventually started eating hospital food. I got used to it. I used to, as soon as

I could get myself mobile, take myself off and go out and sit

in the gardens, a few sweaters on because it wasnt very

warm but I would rather do that than be in the wards. I am

basically anti-social. I dont like other people particularly

if they are ill. But my whole ambition right from the time

I was in there was that it was only a very temporary set

back and very soon I was going to be back doing whatever I was doing before. I wanted to be

back doing the things I was doing,

But you had totally lost all feeling down your

left-hand side and couldnt stand or walk or do

anything at the beginning really could you.

No, I had a lot of mental challenges to

cope with which I think helped a lot. So I

kept the brain turning over. My younger daughter

was due to get married about three weeks after I had

the stroke and the doctors told us they would either

have to cancel the wedding or go ahead without me. I

said nonsense, we are not cancelling the wedding and

I am going to be there.

Determination and Goals...

But really the target was I think a good thing, the wedding

being there, he is a very determined person and unlike most of

the other people in there who seem to be determined to accept

their fate, he never wanted to accept his fate.

But we didnt know even until two or three days before the

wedding whether he would be allowed out.

They said oh well we better get you down to

physiotherapy then and get you a bit stronger so you can sit

upright. So that gave me something to think about

and I had to think about something to say at

the reception. So I had worked out something to

say and jotted down some notes for you to type up. The

hospital were very good, It was lovely to be there but I had to

go back to hospital straight afterwards and slept for a couple of hours. They let me out again

for the first part of the reception and I had the meal and said a few stupid, incoherent words,

people clapped very gladly and then went back again, that was brilliant.

I saw all these people and they had had a stroke like I had and I

thought I dont want to be like that, I am not going to be like that,

I think more than that though it has to do with your own personality,

and then your determination to get yourself away from that area.

There were a number of people in there who were not nearly as fit

as he was, and very frustrated as to what they couldnt do, but then

they had no determination to get away from that. He said

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It hasnt stopped me talking or thinking.

I also dislocated my elbow when I fell so they concentrated more

on that.

At the time I was in the hospital because of this and I had five

operations on it and I had to have it pinned but they treated

me quite well.

The after care was fine the nurse - she put me on to the

Stroke Club, that was okay. I didnt have my CAT scan until

a few days later, I couldnt have physio on the arm. I was in

plaster from there to there for nearly three months.

I picked up that bug - I picked that up.

It hasnt stopped me talking or thinking but it can get you down. I used to do a lot of knitting

and sewing but I cant hold needles now. I used to do patchwork, make wedding

dresses, bridesmaid dresses.

Some people come to talk for a bit -one or two have been a bit,

not over my head, but they have rambled on- you cant please

everyone, but on the whole we had a talk from the fire serviceabout safety, dont leave your fags around. Id like to see a

prison officer or the police with a dog, I love that. Id be making

a fuss of the dog, that sort of thing appeals to me. but we all

muck in together. You listen

to other peoples problems.

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Yes, he was bewildered, what had happened to him, but I would say, hed had a couple of

far away experiences, he said everythings going away, and we called the doctor and he said

Id better get you tested at the hospital.

Obviously they were mini strokes, we never heard anything about those, but he had a big

one before he even got tested. And he had a b lock carotid artery which could have possibly

been cured. So that was important. He couldnt speak for six months.

He was not making any sense with it, but he

was shouting out German words and French

words, because his mothers French.

I used to give him the childrens cards,

tomatoes and animals, and ask him what they

were. I showed him a banana once and he went

tomato, mato. But we were told off by the speech therapist,

she said that we dont believe in that, but gradually he was looking at

things and pointing. I found my own way to help him. And he actually slept in a chair, because

he was in pain.

Gradually going to Laidlaw, brought him out of himself, once a week, you

went, for a little bit of physio and a bit of chat, and he gradually, gradually

got better didnt you?

I can remember him getting so frustrated, he was walking

along the front and he suddenly got his walking stick and threw it.

You do need a bit of help though I think, because its so

frustrating if youre trying to dress yourself, its easy to collapse into I

cant say self pity because it is a terrible shame.

You were embarrassed werent you, if someone asked him the way or did he know

where something was, and he couldnt say anything,..that woman said, oh hes drunk

So he had a little badge that said Ive had a stroke, Im not drunk.

I Am Not Drunk - Ive had a Stroke

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with a friend, we were both staying on

the seventh floor and we had just gone

into breakfast. I have really high blood pressure and I

forgot my tablets, I ran up seven flights of stairs and when I got near the

top, I wondered whether Id make it. I just collected the tablets and came

downstairs, I started to feel - I didnt feel myself I didnt have a headache or

anything but I got a little bit of tingling. We had to make an earlymorning start to come home and I like to pack and get everything ready, but

I packed and I unpacked, I packed and I unpacked again and again. I kept

thinking Id left something behind, I took the whole night nearly to pack

and I was in quite a state.

so I phoned my friend, she said are you all right youre

slurring your speech, lets see if we can get a b it of advice on

what you can do because you have got this nasty headache .

She rang Accident and Emergency and they asked if I would go to the

telephone and tell them, I went towards the phone, and suddenly, I had difficulty, I couldnt

remember my address, I couldnt remember really what was wrong, I couldnt remember my

name. I was taken to casualty and I spent quite a long time, different people came and looked

at me and I was taken on to a ward to be assessed and I was there all day, I cant tell you,

what happened ,but at midnight I was put into a gown and I had to have a brain scan. I waspetrified of that because I didnt know what to expect and it was sort of like going through a

polo, They were able to give me the results straight away and, I had a brain bleed on the left

hand side in the front. When there was a bed on the stroke ward I went up there and I was

I was on Holiday with a friend when in for a month. The physiotherapist came andthe occupational therapist and I had to go to

the gym and learn how to start all over again.

I couldnt remember who the people were.

Somebody came and they gave me

I was very confused. I did make rapid strides physically and I can

walk, I can touch my toes. But when I came home I felt like a stranger

in my own flat, I didnt know how to use the television, I didnt know how to

answer the telephone, I wiped all my numbers off the television system and it took about four

days to get used to making a phone call again. Even now I find it hard to understand a form, I

cant even enjoy a magazine because I cant retain anything, I love to watch programmes on

television, mainly the quiz programmes because Im trying to train my brain again and that

is something that only I can do. I cant remember anything Ive learnt, so Im having to start

all over again and its quite an experience and Im finding something different about myself

each day and I have to now live a day at a time. My friend and I have some very interesting

conversations and understand each other perfectly well. I think shes the only one that

understands me and she tells me something and half an hour later I cant remember but

I cant explain it to anyone that hasnt had a stroke.

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He had his first stroke in 2000. He was in hospital for three weeks. It wasnt severe but there

was no stroke ward, he was on a main ward with just ordinary general patients and nobody

seemed to understand how to look after somebody whod had a stroke.

When he had his last stroke, it was eight years virtually to the day, he went to the stroke ward

and the atmosphere was so different. You felt youd got people you could talk to and ask advice.

The thing is people that have had a stroke dont realise the strain they put on the

carer and if the carers got somebody to turn to you feel that its relieving your

burden a bit because you can explain something to them and they can tell you

how to deal with it.

I feel sometimes ... you get to a point you feel oh if only you could say, right,

were going away, hes going to respite care and Im going to have a break but he

wont go to respite care anymore.

So I get two two-hours twice a week, a carer comes in to sit with him and I

get two hours off but those two hours go by so quickly especially when you

say well I must do this and I must do that, I must do something else and its

not two hours to do what you want. Its either get the prescription, take it to the doctor

or theres something to do and even now I f eel very, very frustrated at times.

Its nice to have the Community Matron, shes at the other end of the telephone and if I

need her she will come. If she thinks he needs a doctor she will then phone the surgery and

get the doctor. She does all that a doctor would do if you called him in, his blood pressure,

his temperature, she listens to his chest and his back to make sure that he hasnt got any fluid

on his lungs.

Only 2 Hours.Some information explains the aggression, how he can get

aggressive, and at times very demanding and youve got to learn

to count to ten. Ive got to the point now where if hes being nasty

then my best bet is just leave him like you would a child. Alright,

get on with it, and I go upstairs out of the way and by the time I come

back down the mood has passed and hes fine but at that point you dont

realise what a strain it puts on you, not really, not till it happens to you

Ive got a load of books that came my daughter got them from the Stroke Association.

They sent me all these books through and that was when I came to understand the

behavioural problems, and if it hadnt have been for them I mean I just wouldnt have known

because I just would have taken it that it was just

so I found that those books were very helpful.

So the Stroke Club is a good release because you can go and he can chat to the others there, I

can talk to them, so youre together but apart and he enjoys that and he enjoys the outings

theyre either carers or theyre the stroke survivor. So theyre a lovely lot, and

the message from them is always the same, if you need to talk pick up the

phone. You can get some lunch so its like a treat really because I havent

got to think oh Ive got to cook the dinner,

somebody else, even if its only soup and a

roll, somebody else is doing it for you, thats

the nice bit.

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To be Treated in a Special way

The Community matron takes my blood

pressure and everything, she does the

lot. She acts like a doctor and its true,

shes just like the doctor, and she can prescribe

or change anything and she just tells the doctor what shes doing

I wouldnt have been in and out of

the hospital like a yo-yo. I was a

regular feature in hospital. It started

in 2000 and I had a big stroke and

then pneumonia, pleurisy, pulmonary

embolism, DVT and then the doctors

thought that I had trouble with my

pancreas so they sent me into hospital

for that but, as I said, they couldnt find

anything and something else developed

Its important to be treated for a stroke not just

as an ordinary patient, thats what happens. Anyway now

stroke affects people different ways,

I was on the ward and in the next bed to me was someone I knew and hed had a stroke and

he was only in two or three days and they moved him to a side room, he didnt come out, he

didnt come out of it. I think Im very lucky to have got this far.

One Friday night I went to bed and woke up in the morning and I couldnt get my speech

out, it was like I was drunk. I dont drink but I was slurred, I d idnt know whether I was coming

or going. That was on Friday, on the Saturday morning, it was nearly dinner time, I said to my

wife the best thing I can do is see a doctor so she phoned the surgery, went down and it was

my own doctor funnily enough that was on duty and he said youve had a stroke youre going

to be warded. Id heard of a stroke, I never thought it would happen to me, Theres more help

given now to stroke victims and the stroke club is there.

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wI just assumed that. Ive read a lot, and I knew that he was having a stroke. And

when the Sister did tell me that he had a big stroke, and then I really wanted to

know, was it a blood one or was it a blockage. So thats why they sent him over to

Southampton, and it was a blockage.

He cant go up the stairs, he sleeps in the front room now, since he had pneumonia, it injured

his heart muscles.When he came home thats when we decided to get him downstairs.

Trying to get him to move was awful, so I thought he needs a reclining chair, so I went to

see if I could hire one, if he wanted to go to the toilet Id just help him there. Then I thought Im

going to get a bed down here, and thats when I got his rising up and down bed, in case that

happened again, and I put it over in the corner there because I only had a small three piece

suit, and so he was with us and we could sit him up and lay him down.

We built the garage into another room and put a bed in there. Ive got a bed that I could

press a button and he could sit up.

The Kind of Support

And I mean sometimes I snap back, but he

does try. I mean he could really have sat down

and not done anything, and just withered

away, but he hasnt, hes kept himself going.

But I do worry if I go out and leave him, in

case hes fallen down, and I dont like leaving

him much at all. I should do, but I dont. I couldnt go

on holiday and leave him behind, never, ever.

The kind of support you get is from your family, but I

think people can get fed up, but at the moment, touch

wood, it hasnt shown.

The Stroke Club - I saw it in the newspaper and said lets go

and see the people at Riverside, and so we went.

He really likes going there, because when he walks in they all say hello so he enjoys himself.

We went off to Newquay with them a month ago, but we couldnt do much because of the

weather. But it was a break, its a change, and the food was nice, and I didnt have to cook.

My brother comes and gets us once a year, and he takes us down to Norfolk and really

treats me, he says Im going to look after you. He took us out on a boat and we had a

banquet with 12 other people. He puts us in with his friends and they do good, exciting things,

its really nice. And he comes and fetches us all the way and takes us, brings us all the way

back, so its good. So thats what I call my holiday now. And apart from that, I manage.

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This was in 1998. I went to hospital, I must have gone into a coma or something and I woke

up two weeks after and I was in Southampton General. I was there for three months and then

they sent me back to St Marys. They never had a stroke ward like they do now and they stuck

me in an old peoples ward and I was 47 years old and I was the youngest and it was horrible.

Now that weve done the stroke ward it is beautiful. I didnt want anybody else to go throughwhat I went through.

I didnt have anything because I was walking, I learned myself to walk with a nurse, so

because they said I was walking they didnt want to know about other things.

Back then I came out of hospital with no information, no nothing, just get on with it sort of

thing.

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Things are different now but. Now Im on botox, I asked if I could go on it, I am now having botox which is working andalso having this treatment for my leg in Salisbury. I have got to learn to work with it so my

foot can go up and down, Ive got dropped foot. So thats good. I can go shopping with my

husband now but I still wanted to get better.

Im lucky, my care manager sorted things, I go to the Riverside at Newport and Ive been

up there since Ive been like this, must be nine years this year Ive been up

there, and they asked me to go on reception so I do two days reception

work now on a Monday and Friday. It took me a long time to get used

to all the numbers and to do it and I persevered .

The care manager I had from hospital, she was sick and then I had

someone else, I havent got a care manager at the moment, Im just

waiting. If anything crops up I can phone, there is always a duty manager

on and they will come to me

I want to get something out sometimes but its there, but I cant get it out, cant get the word,

its all part and parcel of it. My family say, oh shes off again, and I say Ive been scrambled

upstairs, thats what I say.

There are certain things you cant do. I think, oh I wish I could go walking, I wish I could

do this, you cant do some of these things? You have got to plan your day. Ive got four

grandchildren and I would love to have them to stay but I cant change their nappies. It is just

normal things you cant do. I would love to have them for the night but I cant, I cant see to

them, I cant bath them, I cant run with them, just the normal little things, -it gets you down.

I found out who my friends were. People I thought were just acquaintances have

been really good friends now. People I saw once in a blue moon I see every

week now, but friends I thought was friends- no.

My independence has gone. I cant just say oh Ill go here and do

this and do that - I cant do it. Like when the children were small on

a day like this Id say right, come on, lets go down the beach for the

day. I cant do it now, I cant get on the beach it is things like that.

It was nine years ago now, a lady came to St Marys and she

wanted to know of anybody who had a stroke on the Isle of Wight,

I went to one of these meetings, because there wasnt anything for

strokes on the Isle of Wight back then. So it was at St. Marys, the social club,

we all met. The beginning of the Stroke Club and then we decided to meet somewhere else

and it went on from there and Ive been with them since day one,

I want to help people with strokes not to be left alone, make sure that everyone who comes

out of the stroke ward goes with this package that has all the names and addresses and

phone numbers for contacting the stroke club so that people who have had strokes can come

along and become members.

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Well I went to bed and dropped straight off

which is unusual for me, and I just woke up

and I knew something was wrong, my speech

was wrong, Id wet myself and I woke my

husband, he rang for an ambulance and they came, did all the vital signs and that. My blood

pressure was way up but I didnt understand what was going on, I was panicking and when

I got to the hospital I had another one, a mini stroke and they said dont worry about it, were

doing everything. I took their word for it, Im quite an excitable person, I worry about everything.

I was there about three or four days when they said I could go home and I was going out

the door when I collapsed.

I was so scared I kept going into this panic. They even brought

someone over from mental health I didnt realise I was going into

this panic, you see, She sat down and spoke to me because every

time I went out of the ward I panicked and had to go back to bed, I

was there eight or nine days.

I had a very good GP, and he put me on some medication to calm

me down and things were getting better and then they tried to wean

me off - I was so anti drugs, he said I needed some psychiatric help really

but there was nothing available, nothing.

So my husband suggested seeing somebody privately. I saw this lady and she was

absolutely brilliant with me and she said to me not to be afraid of the drug I was on, it was my

friend rather than my enemy and she recommended I had this small Librium, 5mg, and if ever I

needed that, this would be my little prop.

I went from there and paid for some relaxation classes, it was one to one and that got

me focused so when my panics were bad I could turn my brain to something different. I am

a Catholic and quite a good believer and we found things

like saying the Lords Prayer, if I said it for three and a half

minutes the panic would go, so this is how I

taught myself to get myself out of

it and gradually, I suppose it

took about five years until I

started to feel confident.

Coping with Anxiety... We went to Newquay and I was excited about going but when I was in astrange bed, strange room, it started. So I just got out and took one (tablet) and I

was fine, it calms me down and makes me think rationally and get

into my exercise and then I can just carry on and do things.

The turning point for me must have been two years after I had

it and I started the Stroke Club and I knew there were other people

like me because people didnt talk about it then, it was very taboo.

I used to say dont tell anyone Ive had anything wrong. If people

said to me, oh I havent seen you for a long time Id say, oh Ive just been

getting on with things.

My worst fear is that Im with my grandchildren and I just die, but that is something you

have to learn to live with, you have to tr y and block it out. I used to write sheets of paper

with positives and negatives, what are all the positive things Ive done today, whats all thenegatives - and the positives so outweighed it, but with me I was self critical.

I was brought up in the environment that there was something taboo about mental

problems, and it was overcoming that block that helped me. Now I can talk about it.

Sometimes my children dont understand,

I say its because my brain cant formulate these things unless I sit down and think about

it, do you know what I mean? It can happen anywhere, I can be in the garden and all of a

sudden I get this awful feeling come over me and I think come on, talk to yourself, you can do

this, breathe properly and then it passes.

Basically it was my own self determination. I read lots of books, I read a book called

Treating Anxiety Without Drugs by Margaret Hills. I read lots of books that tell you about mental

health, sometimes the signals from my brain I know what I want to say but

sometimes the signals from my brain dont tell my body what to do. It

gets jumbled and it is like opening a page that isnt right so I close

the book and go on to the next page, if you can understand.I can say that my road to recovery was partly self help

and partly medical help. I had to find out all this on my

own. I was determined that I didnt want it to ruin my life.

it never goes away. I can get in the car and be going

along just looking at something and it will sweep over

me and it is up to me then to make that go. I say to

myself its only in your head, it will not harm you, its only

thoughts and thats what I try to concentrate on.

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I think I would actually try totalk to their relatives quite a bit

at first to help them to understand

how difficult it is to be muddled up

and not say the words that you want

to say and maybe be a bit incontinent,

not be able to use your body as you used to use

it, and if they are understanding about that then

that person thats had the stroke can recover in so

much better way. When you realise that you cant

talk properly and your body doesnt work in the way

that it used to work and if only somebody would say to

you in a very positive way just have patience and just wait and just

But I must say that a great deal of ones own

determination and insight is needed to recover from

things as I had. Id like to think I am an optimist and that

stood me in great stead because it would have been so

easy to have stayed in a trough of Oh what the hells

going to happen next sort of thing You shouldnt push

yourself, you have to learn that the disability is present

but it doesnt stop you from carrying on quite a normal

life so thats all I can say about that really.

When I needed that kind of perseverance I found that

it was inside

of me. Theres something inside of you that enables you

to think well Im going to do it.

The Advice I would Give .

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I was in the health service and my last job was

as a health visitor,

Then I met two nurses that had begun to do some

work with stroke patients on the island. It wasnt very

well organised and they had a huge job on their

hands, they were extremely understanding and in

touch with people, they listened, and I admired them

both tremendously for the work that they were doing.

So I phoned people up and phoned the Stroke Association

and thought lets have a go on the island.

Youve got to use your nous when youre starting something up and so you just go round

and talk to people. Everybody could see that that would be a really good idea. So the hospital

allowed us to meet there and it got bigger and bigger, and there was a real need for it - we

had some really good ideas, and we had some really good people that came to join us as well.

The stroke club has got stronger. The group of people that formed the committee had all

different abilities, different strengths and different ways of enabling us to go forward.

Now we have hydrotherapy. Theres a kind of helping ethos about the club for people

having had a stroke. A stroke can have such catastrophic effects on a person.

So when you are in a club and you see all of the amazing things that people are capable of

- Ive met the most courageous people that inspire you really to do things so that they can have

at least some pleasure out of their lives. Its very important to value people.It is quite inspiring, you know, when you meet loving people that give of their lives without

cost at all and of course one of the good things about the club is that you meet every month

so its a regular occurrence theres a continuing friendship. You dont have to have a friendship

thats intrusive but the support that comes from getting to know people

You learn so much about people, when to talk to them, when to support

them and when to leave them alone. Youve got to be positive about things

but the familiarity of knowing a face even if you cant talk very well, its very

comforting to people actually and the Isle of Wight isnt a very big place.

Theres friendships that occur outside of the club because people

come to the club and all of those things go on, its everlasting.

In the Beginning ..

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Lots of little things like walking was all right but I was frustrated at being so tired.

I dont know with what, I just had no energy, Id try and get my words out and they were all sort

of slurry and the headache! But the biggest most frustrating thing was to get my hand back

because there was so much I couldnt do .

I was stubborn, you know, and then afterwards, I had depression

and everything hit me like a ton of bricks. I kept on -oh Im okay,

Im fine, because Id got a splint on my hand I was up and I was

doing stuff here and then all of a sudden Obviously my body

was just shattered I was just worn out and I just didnt realise how

worn out I was. I got cross I think with myself but the

depression was bad.

People are just ignorant, if youre talking funny they think

youre drunk, you know, they dont think that maybe its a genuine

reason, they just sort of cast you aside if you cant remember things

people ask why cant you, you can remember this. Its just certain

things that you can, certain things you cant.

I write things on a piece of paper -its terrible, like a kid, Ive pens

now, theres notepads in the drawer, so I know where it is, thats

the only way to remember it.

Since going to the group its nice because theres other people that have got the same, -

We all can have a laugh and a joke and we can do

things and they have people in and we have a talk, its like a family, which is nice to know -

youve got that.

and then on the Monday, I went down to the doctors, and he was a young doctor I saw, he

just said oh youve had a mini stroke, take her home, plenty of rest,

but I kept complaining of this arm and they said well thats normal what do you expect?

I couldnt do anything with the hand, I couldnt move it. The hand and arm was hurting

so much, I went back to surgery and in the end they took me up the hospital for an x-ray,

because of the osteoporosis Id crushed all the bones in the wrist, the hardest thing was

because of being left handed, I couldnt do anything.

I remember that Sunday I was just feeling, I was here

but I was a million miles away, and just really feeling

something wasnt right , I just couldnt place what it was.

I was just going to lie on the bed and all I remember is

coming out through the door and I was in a heap in the

hall and I was shouting out but nothing was coming

out, I didnt realise it but I wasnt getting any words

out. But the biggest and this was the most depressing

thing was the fact that I couldnt use my hand .

I still go and pick something up and I get cross

because all of a sudden I feel Ive got grip but its

not. My memory as well, because I was doing a

computer course at the time and when I went back

to do the course I just couldnt remember where I

was, I was doing Microsoft Word and I just couldnt,

looked at the screen and it was just like looking at a blank

screen, I hadnt got a clue where I was, what I

was doing, how far along Id done. Im actually starting now

to do this again up at Riverside and its a fantastic unit and you

just do it. If youve had enough after half hour you can stop.

Everything hit me like a ton of bricks

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Information providing information about Strokes for people needs to be

more carefully thought through to help people cope with their scrambled

brains. This applies not only to the format of the information itself but

also how and when it is made available to the patients and their carers.

The Stroke Club has the expertise and understanding, together with the

professionals, to develop this further for local public services

Brain Training-was a phrase used by one of those interviewed to

describe the process of getting things back together. The theme is

repeated by many in different ways to describe their own way back to

ordinary every day life. They all had their own coping strategies and

methods, but all of these are important in helping to support others in

building their own recovery programmes. The Stroke Club could provide a

key role in this work.

Supporting Carers- we need to do more to support carers to understand

what is happening to their loved ones. Alongside the physical rehabilitation

is the need to help them with their own isolation, and understand how best

to cope and help with the scrambled brains and the different challenges

that presents. This can be about speech, anxiety, depression, frustration

and anger. A knowledgeable professional could help the Stroke Club to

develop this further. Respite for carers is much talked about in national

policies but a simple and practical approach could be developed alongside

the more formal services provided.

Skills, Knowledge and Understanding-some spoke with great respect

about the care provided by the various clinicians involved with them and

they acknowledged the great progress made in the quality of services

provided over recent years. But there is a skills gap particularly where

care needs to go beyond the physical to support the brain training and to

support the development of self management approaches.

Some Reflections..

Self Management and Motivation this was a key element in all

these peoples experiences, and a more structured recognition of self

management approaches which are used to help other chronic conditions

could be built on to support local people, and provided by the Stroke Club.

These approaches could also be started when people are admitted to the

Stroke Unit by helping people to understand the importance of motivation,

pacing and setting their own goals.

Coping with Anxiety and Depression- many people struggled with anxiety

and depression finding their own coping strategies but finding it difficult to

express the issues they were facing. This is an element that the Stroke Club

could think about developing as part of their programmes

The Stroke Club is a Community valued by many people for the support,

the physical programmes, the friendships, their commitment, care and

availability a simple solution but equally challenging more please.

IllustrationbyJasminaFactory

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Tell-me-More about Stroke Services--Improving Care through Narrating Experience

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