Sue

Age at interview: 50

Brief Outline:

Sue has had asthma and ulcerative colitis since her twenties. She had a stroke aged 47 and spent 10 weeks in a rehabilitation unit. She has been left with weakness on her left side and walks using a Nordic pole recommended by her physiotherapist. She volunteers for a stroke charity.

Background:

Sue is married with two children and works as a part-time telesales advisor. Ethnic Background: White British.

More about me...

Sue was diagnosed with asthma in her twenties, and also ulcerative colitis after she had been on a diet based on powdered slimming drinks. Throughout her life she has had periodic flare-ups treated with steroids. Whilst she was in hospital following a stroke, Sue was put on a new colitis drug which was found to bring better control for her colitis. She takes a number of medicines daily, but cannot take ibuprofen because of colitis. 

Sue says that in hospital a colitis flare was suspected of triggering the stroke she had at age 47 but “they couldn’t prove it.”  

Sue tries to publicise the fact that not only older people have strokes although services only seem to be set up for elderly people. She had to apply for funding through a Primary Care Trust to go to a specialist rehabilitation service in a different area. Whilst talking about seeking and accessing relevant services, she says, “A lot of the things that we have done has been off our own backs.”

Sue feels that she has “kissed death” by having a stroke. “There’s not a great deal I can do. If I had the opportunity and the chance, I would walk, but I can’t. The house is adapted for me and there’s not a great deal I can do. I can’t get too stressed. I can’t get too upset because I don’t want to have another stroke. “

Of her GP, Sue notes, “There’s no sort of hands-on care as such. It’s just regular check-ups.”

Sue’s asthma is mainly affected by weather conditions. The only explanation available for her colitis lies in the use of powdered slimming drinks in her twenties.

When I when I first started with asthma, which I guess was my late teens, early twenties, I used to play netball with some friends at a local sports centre. As a young child, I had suffered with bronchitis and from memory; I think my GP might have connected that with the asthma. So from my sort of early twenties, the asthma has been there and I just, like I say, take the salbutamol or the Ventolin. I know when it’s a cold, damp morning that I need to sort of take a booster on the old inhalers because, obviously, it affects the chest a little more. The colitis, when was that? I think again I might have been in my twenties and I was doing the, I had been doing the Cambridge diet.

Right.

Which was powdered slimming drinks and all that sort of thing and I when I saw my consultant initially, he asked me if I drank coffee. He asked me if I had powdered soups, to which I don’t drink coffee. I’m a tea drinker. I have never really used powdered soups. The only thing I could think of was the Cambridge diet that I, you know, I had changed in my lifestyle, shall we say. And it was just to start with, it was called non-specific proctitis and, over the years, because I’ve had flare-ups it was getting to the stage where I was having a flare-up every twelve months before I had the stroke.

Sue describes the care she currently receives for her various conditions. She has regular check-ups but no ‘hands on’ care anymore.

In terms of the care that you get now for your conditions.

Yes.

Which ones do you feel you get the most help with?

I guess the stroke is the dominant one, though I have finished all physiotherapy, all sorts of therapy and what I do on the stroke side of things, is off my own back by going to my trainer maybe once a week. The asthma, I have a check-up, I think it’s every six months and the ulcerative colitis, I go back to [city] once every twelve months and that’s it really. There’s no sort of hands on care as such. It’s just regular check-ups.

Right.

The asthma, obviously, I do the flow meter, flow thing that you blow into and that’s it. On the stroke side, like I say, all therapy is finished.

Okay.

So the on-going care is probably just a courtesy yearly check-up.

And do you have much contact with your with your GP on a routine basis or is it is it as and when or?

It’s as and when I need it really.

Sue found that there wasn’t much GP input following a stroke, or physiotherapy provision in the community. She found a personal trainer to supplement her care.

Did your GP have any input or did you have much contact with the GP at this time or was it more. Hospital based or?

Not really. Not really. The GP surgery were very supportive but that was about it.

Right.

If I’m honest with you.

Would you have liked more GP input or?

I guess, knowing it was there, oh god, I don’t know, to be honest. It was like, it’s like having a friend on the end of a phone, you know they’re there if you want them. That’s the only way I could describe it. So if my husband hadn’t heard about this centre, then there is no way, any other way we would have heard about it I don’t think.

Right.

So I guess that sort of answers your question. There wasn’t a great deal of input.

And yes, perhaps there should have been more input. A lot of, like I say, a lot of the things that we have done has been off our own backs. For example, the trainer, I found a personal trainer for when I came out of [rehabilitation centre], where I was having forty-five minutes of physio, forty-five minutes of occupational therapy, forty-five minutes of psychology if I needed it, forty-five minutes of speech and language therapy, again, if I needed it. And that was every day and every patient had their own individual schedule timetable tailored to their needs, which was set up by the, what do they call it, like the management team they have.

Yeah.

Is it SMT, something like that, senior management team.

Right.

Where all the therapists, the doctors, the consultants get together so I had my own timetable. I shared a room with a lady who was in her thirties, who had her own timetable and that that’s the difference. Forty-five minutes a day, five days a week as opposed to an hour a week in the community and there’s the difference. No wonder I am where I am

Sue organised her own physiotherapy following a stroke using Internet research conducted by her and her husband. She even found a fund she could claim from to pay towards the cost of a health trainer.

Would you have liked more GP input or?

I guess, knowing it was there, oh god, I don’t know, to be honest. It was like, it’s like having a friend on the end of a phone, you know they’re there if you want them. That’s the only way I could describe it. So if my husband hadn’t heard about this centre, then there is no way, any other way we would have heard about it I don’t think.

Right.

So I guess that sort of answers your question. There wasn’t a great deal of input.

And yes, perhaps there should have been more input. A lot of, like I say, a lot of the things that we have done has been off our own backs. For example, the trainer, I found a personal trainer for when I came out of [rehabilitation centre], where I was having forty-five minutes of physio, forty-five minutes of occupational therapy, forty-five minutes of psychology if I needed it, forty-five minutes of speech and language therapy, again, if I needed it. And that was every day and every patient had their own individual schedule timetable tailored to their needs, which was set up by the, what do they call it, like the management team they have.

Yeah.

Is it SMT, something like that, senior management team.

Right.

Where all the therapists, the doctors, the consultants get together so I had my own timetable. I shared a room with a lady who was in her thirties, who had her own timetable and that that’s the difference. Forty-five minutes a day, five days a week as opposed to an hour a week in the community and there’s the difference. No wonder I am where I am because, when I came out of [rehabilitation unit], we found a trainer in [town], who had worked with stroke patients, and he has a fantastic treadmill which is called an Alter-G, a l t e r g, anti-gravity treadmill.

Right. Right.

And, basically, you put on a pair of lycra shorts, you’re zipped into the treadmill and you just walk. Part of retraining the brain to walk, you literally just walk, walk, walk. The machine calibrates itself so it can take a third or two thirds of your body weight off.

Right.

And, literally, hold you in place while you walk and that’s helped my stamina and my walking but I, again, found out about, we Googled him and found about him and the other thing that I also managed to do was find a charity that offered money, bursary, whatever you want to call it, towards women and I got six hundred pounds from them, which went towards my trainer.

Right. Right.

Need only, where we had two good salaries coming into the house you’re just reliant upon your disability living allowance. So like I say, we got six hundred pounds from this charity towards my trainer.