Malcolm’ My message to the healthcare professionals and the doctors is listen to the patient, listen to the patient because the patients knows what’s happening inside him, at least I do. And you know just take the time just to sit down with them for five or ten minutes, and just have an in-depth chat with them. And also explain to them what is going on. Explain to them what’s happening because I find if one knows what’s going on, if one knows what’s wrong, they can manage it better. don’t try to you know say, Oh well this will be all right and that will be all right Just to sit down with the patient and just have an open deep thorough chat with them. And just let them know what’s happening. don’t try to bull them, as we say.

Wife’ All they can say to him is, Ooh you’ve out a lot of weight on Surely he has but he can’t, he’s not moving. He’s not mobile. – take out this line whole line

Malcolm’ That that annoys me. And, and, and I know I’m putting weight on you know. I always say to them, I’ve had a stroke but I’m not stupid That’s what I say to them. I say that to them, I’ve had a stroke but I’m not stupid I know I’m putting weight on obviously I’m not moving properly. But at the same time I’m trying to eat reasonably well. So I’m not putting all that much weight on. I know what I’m eating. What I can do with the doctors that come in, the health professionals or the physiotherapists or the occupational therapists, and say, Oh yeah, yeah that’ll do, yeah we’ll see you Just say what, what’s going on.

Day by day, I’m getting on and people are so good. I can’t get over how good they are and the nurses in the hospital, every one of them, they were marvellous. I was feeling quite ashamed. I was saying, ‘I’m never as kind as this to other people myself. That’s what I was feeling. Everybody was so good and my sister and my sister-in-law, they were all so nice. They couldn’t do enough for me and I was saying, ‘Oh, this is great’ [laughter] ‘I’m a VIP’ [laughter]. They were spoiling me. I wasn’t used to that treatment [laughter], they were. But I was, it was, I wouldn’t say it was worth getting a stroke for but it really opened my eyes to see how kind people could be, you know, its true enough and here I am at this stage.

I think first and foremost probably one of the worst experiences of the stroke was when the consultant had come along, I think I’ve mentioned before, and asked me had I taken drugs on 4 or 5 occasions, which obviously the question had to be asked but the way it was asked and what was inferred, it was, it was how it was inferred and I’d answered him twice no categorically and he said, ‘You can tell me off the record, have you?’ and I said and he, it upset me very, very much because I felt like a piece of dirt. I really felt like scum because really the consultants and the staff don’t know you from Adam. I suppose you go into a hospital with an illness and they’ve no idea about your lifestyle or you know, your integrity, how you live your life and I didn’t feel as if there was very much respect there on several occasions. It could have been done a lot, some of the questions could have been asked differently or worded differently whereby I didn’t take offence and I was very emotional when all’s said and done. That was part of having the stroke. It made me tearful and cry and I wasn’t intelligent or articulate and questions were asked and I was just a bubbling wreck because I was in total shock and sometimes I felt that the consultants didn’t treat me as a person enough. It was more as if I were just another case or another piece of paper or another case study really, rather than me and I think people, a lot of people had said to me, ‘Well, you’ll have to give up smoking now’ or one lady in hospital had said to me, shed been visiting her mum who’d had a stroke and she came over and she said, ‘We knew somebody who had a stroke and they were she was only 40 but she was an alcoholic’ and looked at me and I thought, ‘Well, perhaps a glass of wine, you know, now and then on a Saturday night’ [laughter] and I think it was just peoples perceptions that if you were younger, it was because you had a problem with alcoholic or because you smoked an awful lot or you were very unfit or you sat eating fish and chips every night or whatever and I think they classified me in, she must have done something to herself to have had a stroke, and that’s how it felt.

I don’t know whether it was deliberate I probably was very sensitive but it felt like that and I felt like saying, ‘This isn’t fair, you know, I shouldn’t, I shouldn’t be here and I’m sure everybody in that stroke ward felt exactly the same, you know, we shouldn’t be here but you go to bed one night in your nice little house with your lovely life and your little family and theres a future and then, you know, you go to bed the next night in a hospital bed in a, you know, a paper nighty and you’ve got to wee into a kidney dish laid on your back and you think, ‘Hey, what are you doing up there? Why, why are you punishing me?’ sort of thing. But I’m sure it’s something that everybody feels angry about.

One particular nurse in a specialist neurology unit I was at had had, he was the first nurse that came to see me when I went into the unit and he was absolutely wonderful. He told me hed had encephalitis which is it water or swelling of the brain and hed been really poorly and hed been very lucky to survive it and because of his particular obviously what he lived through his particular life, hed gone into nursing and hed obviously specialised in brain and neuro surgery and he knew what it felt like to be in there and he came over and he, on New Year’s Eve, we were there and we all celebrated in our own way and, you know, he came over and gave me a cuddle and said, ‘You know, next New Year, you won’t be here [laughter], you know, and it was just a really bonding enriching experience because there are so many wonderful people who go into nursing and doc, and doctors and consultants who really genuinely do help and do make it easier and there are those who obvious

I think I stayed in hospital for about 11 days and had a lot of experience about like once the nurse making mistake giving me the dose which was not prescribed, it was more than that and having an experience with an just training nurses about cultural awareness, I mean, I have that experience that they do not know who I am or what my background is. They think I can’t speak or I have no English, that sort of thing.

Second day, the physiotherapist and they had a very strict, restricted schedule like in a 10 minutes to a patient or 15 minutes to a patient. That, to me, is not, the moment you are told and the nurse will look at the watch, you feel disheartened, you know. I think that she is, she is not interested in me. That is also one of my observations where I do, don’t find it. Yes, there are good nurses where they will relax and first they will find out whether, are you feeling thirsty, are you feeling tired, do you need your stick in with you, do you, you didn’t forget your purse and your raincoat. Very simple things. The moment you talk about these things, you build up a relationship with the person you are talking to, that you are going to do, you care about it, the rest, everything easy. After that, you know, whatever you do, it will be very easily accepted.

I think in terms of health professionals, it would be sit down and listen and talk to people. Being in hospital, if you’ve had a fairly independent life and all of a sudden you’re taken away from your home and your work and your family and your friends and you find yourself stuck in hospital for, well, the best part of, well, 6 months nearly… it can be a very, it can be very isolating and I did feel very, very alone. It would have been nice to have thought I had a friend in, in the hospital somewhere other than my visitors that were coming in to see me. And apart from the physiotherapists and the one occupational therapist, there was no one I would have turned to or talked to, and there was actually times on the ward where I wanted help and I didn’t feel there was anyone there that I could ask, that I felt comfortable to ask for help. I just thought I don’t want them helping me because there was no one on the ward that I had any regard or respect for.

The one thing in particular because I can remember I had gone to the bathroom and used the toilet which I managed on my own but what I couldn’t do was do my trousers back up again afterwards. I couldn’t button up, so I just had to leave my trousers undone for the morning and actually went over and asked the physiotherapist in the other department and she said, ‘Yeah, of course I’ll help you’ and asked me why I hadn’t asked anyone else and I said and she said, ‘Oh that’s dreadful’, I said, ‘Yes, that’s not a very good reflection, is it on how unapproachable the staff are that I won’t even ask any of them for help. I’d rather go around just with just a pillow put it on my lap so I’m not flashing rather than ask for help to do my trousers up. But she said, ‘Well, any time you’re stuck like that, just come over, you know where the department is, you’ve got your chair, anything, just pop over, I don’t mind doing it.

But it’s just being approachable enough I would say for health care professionals, that people actually feel that because sometimes it’s very difficult to ask for very personal help if it’s something you’re not used to asking for, even though it’s something you obviously need. It’s difficult to actually ask for it. Well, I certainly found it so and so did other people who I was on the ward with, other patients. They didn’t like asking for their help, that was very difficult and perhaps they shouldn’t have to ask, perhaps the health care professionals should be understanding enough and trained enough to know that they need to be offering that help not having to wait to be asked all the time. And just sit down and see people as people, not just as stroke victims or stroke survivors which are not terms I particularly like, I’ve got to be honest… Because I don’t feel like I’m a survivor of a stroke, I feel I’m struggling, I’m struggling with the stroke but I don’t think I want to be called a struggler either. Just a person. I think sometimes a person is not seen.

And what about the community hospital phase? Is there anything to say about that?

Deborah: We were, so we went from the [main hospital] to [the community hospital], that was in November and Mum was there November and December. Not brilliant. I had to go back [home] because of work, so there was just no choice of me staying here, and unfortunately the care was dropped off a bit. They tried their hardest, they’re a small community hospital, but I mean for example that one day when they – Mum has always been a person that wears trousers. She’s not one of those ladies that wears skirts, but it was more convenient for them for Mum to wear a skirt for toilet purposes. And Mum doesn’t have very many skirts. Well, we brought in as many skirts as we could, but there was one day when we came in and they’d put Mum in this crimplene dress which was too small for her. And I was livid, wasn’t I? What the hell have you got on?

Stella: You just went puce.

Deborah: And so I felt that there wasn’t enough care and consideration in what they were dressing Mum in, but it was because it was more convenient for them, and it wasn’t what Mum would have worn, whereas here Mum gets the choice and Mum will pick out what she wants to wear, and they don’t worry about Mum wearing trousers. Mum likes to wear trousers. Whereas in the community hospital they didn’t want to deal with the trousers, and I was not happy that day when we went in. I think they did try.

Was there any expectation, I mean when she, when you went there, were they thinking that you’d go home at the end, or was it just a sort of a, like a holding station until you………

Stella: I think it was a holding place, yes.

Deborah: The doctors had already told us that Mum would be unable to go home. One of the main problems, I mean we could have got a chair put on the stairs and things like that, but the problems with having carers at home we could have done [during] the day but obviously there would have been a large part of the night when Mum wouldn’t have had anybody in the house, which was definitely out because Mum does need 24-hour care, don’t you, and you know that.

Stella: I think so yes.

Deborah: Sometimes Mum at night needs reassurance that there are people around, and here they are aware of this so they do pop in or they just………….

Stella: They do look to see that you’re still alive.

Deborah: Yes. You just like to have reassurance that there’s people around, don’t you?

Stella: I just do, yes.

Deborah: And it gives you peace of mind if someone comes in. And sometimes Mum feels lonely being here in the room so some of the carers will sit with Mum and have a cup of tea and read.

Stella: One came and had a cup of tea with me the other day.

Deborah: Yes.

Stella: Before she went home.

Deborah: Yes, and some of the carers, one of the male carers will sit and read to Mum as well.

Stella: He’s an old fellow.

Deborah: Yes. Because I mean reading was one of Mum’s joys I mean always reading books.

Stella: I’m a great poetry lover.

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Eventually I was given a speech therapist and I saw her and she was incredibly rude to me. She said to me, ‘I don’t like what you’re wearing and I looked at her and I thought, ‘What’s, what’s that got anything to do with it?’ and she said, ‘I’d like you to read and write something and bring out something so I brought her a piece of writing about something that I thought she would be pleased and she said to me, ‘Well, that’s very good, you didn’t very well etc. She was really, really critical all the time and, and she spoke very, very quickly all the time. She didn’t like me. She really didn’t like me. Yeah. We didn’t like each other, I don’t think. Or rather, to be perfectly honest, only about a week ago from here, I found her in town and I saw her and I said, ‘Oh, hello X, how are you?’ and she said, ‘Oh, are you better?’ and I said, ‘Yes, I’m fine, how are you?’ and she didn’t want to know. She turned away and walked off. Shes I think theres something wrong with her. But anyway, this is nothing to do with it but shortly after the very first time that she was supposed to be someone to help me I had epilepsy and she was supposed to be helping me to read and write, all the rest of it. But she was making me feel like this. She was really hurting me and it was nasty to me. I could say a few more things to tell you about this but a few of nurses I have heard that they don’t think shes very nice either. But anyway, theres, but anyway, I don’t want to quote about things like that but theres something wrong with her because, in me personally, if I was going to talk to somebody, I would talk slowly, I would look straight in the face, I would listen with care, etc. She wasn’t like that at all.

But then I did have an occupational therapist [coughing] at my local hospital when I came home and she initially was very good. She came to the house but again the second time she came, her husband had had some very, very serious disease like cancer and when I said I was it made me feel very depressed to have, to not be able to do things and I think I started weeping. I got a lecture from her about how did she think, how did I think her husband managed, hadn’t I better pull myself together, etc. And I was very upset. I didn’t say anything to her at the time but when she came last week, the following week with a student, [laughter] I told her off about it. I said it was completely out of order, she shouldn’t have said anything like that to me. So subsequently she did, she did keep coming to see me or asking me to come down the hospital and she used to take me out for coffee and things like that and we used, I used to walk a little bit on the, only not on flat field. And then she just disappeared into thin air a couple of years ago. I haven’t seen anyone since then.

Well my own GP when I went to see him straight after the stroke, he says to me ‘Well get you back onto aspirin, and I says, ‘I’ve not to go on aspirin because they tried me on Aspirin and it didn’t work for me so that’s why they put me on warfarin. So I’ve to stay on warfarin for the rest of my life, but he was determined to put me back onto aspirin. So had to explain to him, you know, no the doctor in the hospital said this, this and this. And he was a wee bit kind of a, ‘oh well see about that, you know. So, but standing up for yourself is where you could have stood up for yourself no bother in the past, I think once you’ve had the stroke you’ve not got as much confidence. So you try your hardest to communicate with these people and tell them but they’re talking you down, you know. But other than that, no I’ve not. I’ve not had any bad experiences.

What I’d say if for anybody that’s had a stroke, if they feel that their confidence is down a wee bit to take somebody with them when they go to their GP though. Because, it’s good to have an advocate with you. You know, because I was getting a point over but I was getting upset at the time too and you know that that’s the last thing that you need.

I encourage, well, I’m moderately well educated and intelligent enough to ask questions of them. In fact, when I was in the, when I was in the stroke unit, one of the good thing was, things was that you are encouraged to ask questions and they are, they will give honest answers and in fact I’d been in there for a few days and my wife and I were, it was suggested that my wife and I should in fact spend some time with the consultant and ask him anything we wanted to know. I can’t remember what all the questions were now, but we had an awful lot of them and as I say, it’s 3 and a half years ago and I can’t remember everything.

What do you think would be helpful for other people perhaps in the future in the way of support? What would you have

WifeWell, somebody to speak to, you know, if the likes of somebody taking a stroke like what [my husband] had and right enough we, the website wouldn’t be any good to us because we don’t have a computer, we don’t know how to work one but even just to talk to somebody with, in a similar ‘

HusbandCircumstances.

Wife’circumstances, you know, and how they got on because, I mean, all I got told in that rehabilitation hospital was to put [my husband] in a home every day. They even got a psychiatrist. One day I went down and this psychiatrist, he, they’d call him in. He spoke to me for about an hour, an hour and a half trying to talk me into putting [my husband] in a home as well and I said, well, I used to come out in tears every day from that hospital, I was always crying because, I mean, if I’d been about 80 and [my husband] had been 80, OK [laughs] I would have known that I wouldn’t have been able to look after him but [my husband] was only 66 and I must have just been about 64, 65 when he took the stroke so I felt I would be able to look after him, you know, and I have.

They didn’t explain why it was happening. And for me that made it much worse because if they had explained to me I could have understood.

Did it feel difficult to ask questions? Would it have felt difficult, do you think?

It did, yeah. Because they’re much, much used for it for older people so they just kind of do, did what they would normally do, for me, for them, which wasn’t acceptable.

Do you think that they were inexperienced in dealing with a younger person that had a stroke?

For younger people, yeah.

Right. And so in the ward that you were in, were you, were there anybody else your age or was it mostly older people? Do you remember?

I would say the youngest person there was about 70.

Right. I mean, in the whole scheme of things then how did that make you feel being in the hospital and the health professionals not really communicating very effectively with you?

I think that really impacted on my recovery, because I really suffered afterwards.

In what way?

I kind of like went into a depression but it wasn’t a depression, normal depression it was from the stroke. But it was so bad, even medication didn’t help.

With the speech therapy, did they get you to practise saying things?

Oh no, they didn’t, they didn’t but… they tried right enough but I couldn’t say them but I think now I think I could, right enough, could go back and say them now if I wanted.

But what happened at the time?

They couldn’t, they couldn’t make us out what I was saying, so that was, that was just thrown aside.

You couldn’t make them understand what you wanted?

That’s right, yeah. I couldn’t.

And was that difficult? How did that make you feel?

I, it didn’t help me anyway but… and it was just no being able to let, explain to them right. I haven’t, I haven’t explain things to them but they explain things to me and I couldn’t answer them.

How did that make you feel?

It made us feel rotten all together. I couldn’t get, do nothing about it really.

Was that generally with health professionals or was it just the speech therapists?

It was the speech therapist. Aye.

I found that, when I came out of hospital I had millions of tablets to take but they all seemed to be working so I’m looking on it as a blessing rather than a curse, having to take all these tablets. And again, afterwards, after the stroke and after I was leading a semi-normal life, I went back to the doctor’s for my usual checkups, blood pressure, heart and everything. And again he said, Well, it’s a bit high I said, What is it And he told me that, the reading, and I said, But surely that’s what it was like before I had my stroke And he said, Yes, well we would like it a bit lower So I said to him, Well am I on the right medication So he said, Oh, let’s have a look And he looked at his computer screen and he says, I think I’ll double this one And he doubled one of the tablets to double the strength and after that my blood pressure went down to normal. But it make me wonder what would have happened if I hadn’t said to him, Am I on the right medication