Department of Health - Reducing Brain Damage: Faster access to better stroke care

Transcript of Stroke Stories

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The first time by Sonia Parsons

My name is Sonia Parson. I had a stroke. I didn’t know there was anything wrong with me. Anyway, I didn’t feel ill. Sunday morning I woke up and I heard a noise in my brain and I can remember I didn’t know who I was. I went to St Thomas’s and then they could see the blood clot in my head.

I wanted to come home and I kept asking “please let me come home” and my husband brought me back.

I had to stay in all the time. I was so bored, I didn’t know life anymore and I felt like a prisoner. I couldn’t go outside because I couldn’t understand when people talked about things and I couldn’t speak about things because I couldn’t speak at all.

A therapist – they came to my house and they helped me to talk a little bit. They said to me “Come on Sonia, would you like to go to a place called CONNECT?” Oh, I was so nervous because how could I go there then? He said to me, my husband, “I’ll come with you on the bus and when we got there, we’ll have a look at what time, what number”. So I’ve been outside and I thought ‘oh dear, oh dear’. I wrote down the bus number it was and my husband said “Right, come on Sonia”. Well, the first time I had to stand there for the bus and it was a number 133, I remember it the first time. And then I walked to the place, to CONNECT, I felt like I was a millionaire because I was doing it on my own. And I done it for the first time in my life and now I’m not nervous at all now. And now I can go anywhere now. And my life is back and it’s normal and I love it. I love it so much because it took a while and it was so difficult to get on the bus. Now I get on the bus – no problem at all now and just go and I love it!

One size doesn’t fit all by Sue an Mike Fisher

Friday the 27th of November 1998 changed our lives forever. Mike and I had been happily married for almost 10 years and were creating a new life in Devon when his stroke struck. We didn’t have a stressful life and the stroke came out of the blue with no warning signs, headaches or symptoms. He was 51 years old.

Mike suffered a major stroke and the blood clot caused an extensive area of damage. He had complete right-sided paralysis and lost his wonderful expressive voice. He did not speak again for nearly six months. One of our biggest concerns was for Mike to receive suitable speech therapy. Mike’s first Speech Therapist seemed experienced but was inflexible and unable to adapt the session if Mike was not having a good day. He frequently left the hospital distressed, feeling a failure and once in tears.

Mike is an intelligent person and should not have been treated like a naughty child set homework he found impossible to complete. I had expected the medical profession to have a better understanding of Aphasia and its complexities. I was not prepared to let this situation continue. But what should I do? What could I do? I was not the sort of person to accept quietly and without question what was being offered. But, if I complained, would he be denied the therapy he so desperately needed?

I spoke to the Speech Therapist and expressed my concerns. Surely it was important for the patient to finish each appointment feeling he’d made progress and with a sense of achievement? Eventually I discussed my worries with our Stroke Association Co-ordinator and Mike was able to change therapists. From then on the therapy he received was fantastic and he made good progress.

However, over the next two years, a lack of resources resulted in our appointments becoming less frequent and we realised we needed to look outside the NHS for support. Fortunately Mike got involved with a local brain injury group which not only gave him a sense of purpose, but helped him come to terms with his disability.

Speech therapy needs to be for the long-term. No two people are the same, their recovery will vary and a more flexible approach will surely encourage better results. One size doesn’t fit all.

New Beginnings by Emmanuel Godis

Question: “I know you were brought up in Nigeria”.
Emmanuel: “Yes”

Question: “So you actually studied engineering?”
Emmanuel: “Yes”

Question: “How long were you in England studying at that time?”
Emmanuel: “One year”

Question: “Then you went back to Nigeria again?”
Emmanuel: “Yes”

Question: “And you lived in Nigeria with your wife and three children?”
Emmanuel: “Yes”

Question: “You’re volunteering at a local community gardening group. You got to many parks, many gardens … you was at the beginning of the garden project.”
Emmanuel: “Yes, I was only one”

Question: “You were the only person volunteering?”
Emmanuel: “Yes, Yes”

Question: “And other people found out what you were doing…?”
Emmanuel: “Yes”

Imagine… by Derek Whitehead

1995
Imagine a person closet to you being the victim of stroke in 1995. Unless your family previously experienced a stroke all that you would say is this person is ill and depending on the severity of the symptoms something would happen. Eventually the stroke would be recognised as such and the patient would be transferred to hospital – probably after a delay of many hours. At that time, stroke was regarded as a medical emergency and the patient would be transferred to a bed in a general ward. And conventional nursing would be available. The stroke would follow its natural path leading to moderate disability, severe disability or even death. If the patient were lucky, he or she, although slightly disabled would be able to live an independent life. However, if not so lucky, the patient would be dependent either on care in the home or in an institution.

2008
Imagine a person closet to you being the victim of a stroke in 2008. All members of the family would have seen the medical information, learnt to recognise the stroke and would have been educated by the information in the press, in the media and on television, funded by the Government, and recognised the symptoms of stroke and will call 999. The ambulance staff will arrive and will recognise that a stroke has occurred. They will know that it is a medical emergency, will provide limited stroke support within the ambulance and will take the patient directly to the hospital – but directly to the stroke specialist unit. In the stroke specialist unit the whole place is geared on the basis that the stroke is a medical emergency and all relevant tests, including brain scans, will be performed within less than two hours. Where the tests and scans show a significant proportion of recoverable penumbrum – that’s the part of the brain which has been affected by the stroke but which has not yet been killed by it – the stroke victim could be injected with a thrombolytic drug with a low risk of intracranial haemorrhage; the patient would make a rapid recovery with significant improvements as compared with what would have happened on a natural basis.

The real pay-off of this form of treatments comes in terms of redemption of the costs of post stroke care which, of course, can go on for many, many years. It should be remembered that for each yea that we delay in introducing this treatment there are people – some of whom could have benefited from this treatment, who will be forever denied the opportunity.

Hold on to your hat! By Alan Hewitt

I had a brain haemorrhage, a stroke, 14 years ago. At the time I had a senior job in the national charity Fewer Poverty. It devastated my life. I was walking around one day and then I was flat on my back the next day. After the operation I had a hole in my head and three clips to stop the bleeding. I couldn’t speak; I couldn’t move my right leg and right arm. I was in a limbo because I didn’t know what was wrong with me. I didn’t find out that I had Aphasia until about two years later.

For 3½ years, I couldn’t put one word in front of the other. With time it got better in some ways. And in other ways I had a lifetime disadvantage because of Aphasia. They didn’t know what to do with me but they didn’t know what Aphasia was. People with Aphasia – they’re forgotten – lost. They can’t speak; they can’t be taken notice of.

I got a different job – Information Assistant. Laughingly now Information Assistant is what I couldn’t do. I learned because they got me a computer and I learned on the side things which would stand me in good stead later on. I also got the Secretaryship of Aphasia Nottingham and for six years that was my life. Good Life. I got to be a Trustee of CONNECT. After a year I said to the person in charge “I could be much more use to you if I was on your staff”. She said “I’d have to think about that”. She came back to me and said “You have to drop your job then you can put in for this working together post.” I resigned my post and got the job. You don’t realise how much a conversation takes. All details about the conversation are minute. There is more to life. Conversation was a deep thing. Now I’m with CONNECT I’ve grown. The job has grown with me. You have to hand on to you hat because at CONNECT it is a whirlwind – but a good whirlwind!

Helping others help me by Ken Bradford

My name is Ken Bradford and I used to work and train people and I decided if they was good enough. When I got my stroke I really didn’t know what to do because I thought I might as well shoot myself. But fortunately my wife helped me. It’s probably because my wife helped me that I finished up alright.

With the stroke I was in hospital for five weeks and after a couple of weeks my arm was wrong. You know at least I can walk and run away and get on buses and things like that. When I have conversations because normally we get two people and I like to listen about 10 minutes to them and they talk. And the I like to change ‘em round and I talk for 10 minutes. You know, if I find people nervous or something like that, I try to help them more because I hope that we can help. I talk about where they live, what they do and it helps me. I like training anyway in the past but, at the moment, if I can help training here it’s very helpful for me because it helps me but I hope that I can help other people.

Duck by Debbie Lee

Yes, one word is duck. Unusual, but duck!

Thinking about the planning out the training, me and Carol and 2 volunteers through the week in the mornings, 20 minutes, relax talking in the café. And we would sit upstairs to talk about one topic and her support for the information about CONNECT or the holidays or the party. And the topic, one topic, for conversation group talking about different things, that is good for one person talking. At the end of talking, other people, new topic, as in gardening, small group or the big group as in the same group may volunteer and half of people and the other half, Carol and the other volunteer. The list for the one job topic as in indoor gardening or outdoor gardening or the price of flowers and stuff. Lots of talking about improving as in speaking out and sometimes as in 1 or 2 or 3 people and very, very shy. And I said “come on you, erm, you’re gardening, your house”. Oh yes, speaking up all the time.

And slowly in CONNECT, realise as in it’s good, it’s better and lots of people talking about different things. Inside me, as in me, as in “oh, oh, nice” as in feel so nice; speaking out is better. Feelings as in improving each time I visit CONNECT and I visit the conversation group in feeling improving for me. But the group I like.

A Brighter world waiting by Rizia Choudhury

I am Rizia speaking. I am a stroke patient. 2nd March 2004. That day I never forget. I couldn’t move. I couldn’t talk. I couldn’t express myself. Only I could cry. That was the worst day of my life that day.

When I came back home I was suffering from depression for three months. Before the stroke I never think of the inner mind. The one of my friends said “have you done meditation?” and I said “what’s medication?” She said “If you like it, you can do meditation”.

Then I started my meditation. Meditation gives me tremendous energy inside. It gives me power. It gives me vigour and health. All of a sudden when I went to the doctor my blood pressure was normal. After 30 years my blood pressure is normal now. It’s fantastic. I feel so good. I feel like I win the world. I thought ‘what can I do then’. I thought I could do the gardening. I did my gardening. I felt so happy. I felt so full inside my soul. All day long I work, I cook, I do the gardening. But I never forget my one hour meditation. I was an angry person, even before my stroke. My anger has vanished now. My husband is very pleased with me. When I had a stroke I felt like drop down from the sky to the ocean. Now I can fly like before. Don’t look back – there is a brighter world waiting for you.

All the colours of the rainbow by Jane Stokes

I was a lawyer in the Department of Trade and Industry 5, 6, 7 years ago. After the stroke it’s sad. It’s very, very annoying. Frustrating. Florence is part of my recover and Vienna is also part of my recovery.

Music is so fine, wonderful, fantastic! All three colours of the rainbow – it’s so good. Fabulous. Classical, jazz, blues, pop, world music, European music – it’s so extraordinary and ordinary. It’s so good.

Connections, Connections – it’s difficult to describe. The whole continuum expanded so interesting to describe – it’s fantastic. It’s extraordinary and ordinary. And fascinating. Two different paradox, interesting, fantastic.

A vision for the future by Ossie Newell

A lady was shopping on a Saturday afternoon – the worst possible time to get in trouble, had a stroke in a shopping centre and a member of the public phoned for an ambulance. She was fortunate. The paramedics that arrived on the scene were pretty gemmed up on stroke and did a preliminary diagnosis of stroke on the spot and phoned the hospital and said we think we have a potential thrombolysis patient here, shall we bring her straight in. And indeed they did and she went straight to the scanning unit and she was unconscious all this time, scanned immediately and the results from the scan came back within three hours. And the drugs were applied immediately after that and, by evening, this lady was conscious and sitting up in bed. Three days later she was on her feet and actually walked home. I think that’s a fantastic result!

Fast appropriate response by Andrew

I’m Andrew, I’m 29 and 2½ years ago I had a small stroke on Saturday evening, Valentine’s Day. I lost all feeling on the left hand side of my body and a lot of my co-ordination so I couldn’t even climb the stairs. But, thinking I’d just trapped a nerve, I didn’t go see my GP until Monday. He referred me straight into hospital – but the hospital’s response was a farce.

I was repeatedly moved from ward to ward and eventually ended up in a geriatric ward with no records because the medical staff didn’t seem to know quite what to do with me or why I was there. Only basic tests were carried out but no scan was given. I got as far as being wheeled down for a CT scan before being returned to the ward without being scanned! And I hadn’t seen a doctor since a few hours after admission.

After two days of this, I was increasingly stressed by the hospital’s apparent inaction. The nurses made things worse – ignoring the concerns of patients and any attempt to reason with them resulted in patronising comments such as “we’re all worried about our health in here luv”.

I’m normally a confidence and articulate person but I’ve never felt so powerless. Although my initial symptoms started to subside, the hospital environment and the stress of being ignored was making me iller. I asked if I could be diagnosed and treated as an outpatient. He told me he wasn’t sure what I had - I might have MS and I’d have to wait at least 12 weeks for a scan as an outpatient. Whereas if I carried on blocking the bed I might get one within a week. What a waste of NHS resources!

Unable to cope with any more of this, I got the doctor to agree to discharge me and at home I continued to recover doing my own research and getting a private MRI scan which finally told me I’d had a stroke. My GP was able to prescribe me aspirin straightway but specialist support and an invite for an NHS MRI scan was still months away.

I managed to get helpful support and access and realised I wasn’t alone through voluntary groups such as Different Strokes. I also belatedly realised I’d had similar symptoms before but another hospital had written them off as a migraine. Given that I now understand that the likelihood of recovering well from strokes depends on quick diagnosis and recovery, my experience suggests that there is little hope of this happening at the minute unless hospitals are more alert to potential stroke symptoms, more co-ordinated and provide fast, appropriate responses.