Fred

Age at interview: 85

Age at diagnosis: 40

Brief Outline: Whilst Fred has heart disease, diabetes and arthritis, his main day-to-day problems stem from Meniere’s Syndrome, which affects his hearing and is characterised by unpredictable attacks. Fred has been in hospital for many operations since his forties.

Background: Fred is a retired inspection engineer. He lives with his wife and has three grown up children in their 50s. Ethnic background: White English.

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Whilst Fred has a range of health problems, Meniere’s Syndrome, which involves progressive hearing loss, causes him most trouble on a day-to-day basis. When he is very ill he is not able to take all of his drugs prescribed for other conditions.

Most of Fred’s medical history involved operations in hospital, not all of which were thought to have been successful. Fred’s experiences lead him to be very critical of the organisation and provision of hospital care. Four operations on his gall bladder, which lasted over ten years during his 40s/50s, were deemed to have been unsuccessful and he had to have another operation to remove articles left inside him by the surgical team. It was following this operation that he was diagnosed with Meniere’s.

Two years before the interview he had a heart operation, following which he was discharged too quickly with not enough medical supplies. He picked up infections whilst in hospital. Following these experiences, Fred is very critical of hospital discharge procedures, cleanliness, food, toilets and perceived overcrowding.  

It was taking Fred so long to see his preferred GP that he changed to a new one, although he is not as confident in them. Fred is active in a local heart club and helps with research studies.

Fred picked up an infection whilst in hospital and his health has not been the same since he came out. This has led him to be concerned about cleanliness in health facilities.

I was moved when I was taken back in, and they admitted, um, that had, I’d got contamination, and I had someone attending me who couldn’t even insert the needles for injections, and I just said, stick them in the back of my hand. But, it was rather difficult. I was in six weeks, having tests done, and I still… I still don’t know what was wrong, what the problems were. And as a consequence of this I’m still… I still think I pick up any…bugs or anything that’s going, I seem to pick them up very easily, and it doesn’t come in ones, I’m getting them in twos. I’ve had flu, passed it to my wife, she’s passed it back to me, I’ve passed it back to her, and the same with the problem I have at the moment, which is this Meniere’s Syndrome. It’s being… I’ve come out of it, I’m back with it again, and I don’t know what the long-term effects will be, I’m just hoping someone can solve the problem. But, um, getting appointments in the hospital now has become difficult, and getting an appointment with the doctor, and I’ve tried the doctor, I said, can I have an appointment next week? They said, no two weeks or maybe three weeks, depending, and for older people it isn’t very clever. I think there should be some segregation.

The other major topic, I would say is, people must… and I state, must, clean their hands walking in surgeries, and clean them coming out. There’s facilities there, and there’s… ninety nine per cent of the people going in surgeries do not abide by this cleanliness routine. I think it should be insisted on, and in the hospitals as well. The other thing I’d say about the hospitals, I think the beds are uncleanliness, people are allowed to come in from outside and they’re not being restricted, and they just wander around the wards, and I don’t think it should be done. Cleanliness in, from my experience, cleanliness in the atomic energy business, atomic, any industry, it was far cleaner than the hospitals. The hospitals couldn’t touch the atomic energy cleanliness routines, and I think it’s causing a lot of problems.

I don’t know if anything will be done about them but… they go through these things, but people just don’t abide by cleanliness, just… I think they could really do with, like a sheep dip, to walk through, to go into the wards. But, um, people come from outside, and when you’re struggling after major surgery, I think something should be done. 

One of Fred’s illnesses makes him vomit, which means he cannot take his diabetes medication. He wonders whether his conditions are related to diabetes.

This Meniere’s Syndrome, does that include heart problems and diabetes as…as part of the syndrome?

No, I don’t know whether it’s impacting, when you get this Meniere’s attack, you don’t want to do anything, you’re vomiting. This week I’ve been vomiting like brown gravy, but… thin gravy browning… just vomiting this stuff up. And as a consequence I’ve not been able to take the diabetic treatment I’m taking, I’d had to miss out on that, ‘cause I couldn’t take anything down. And, I was wondering what the effect is on the diabetic system. Because of it. That was worrying… but the doctor wouldn’t mention… didn’t mention it, and he just said, oh, you know, don’t take these tablets. But I’ve no… I’ve no reason… they haven’t given me any reason, if there was, of a relationship, but he said not, he didn’t say anything. So, I don’t know. 

So the…you were saying that the Meniere’s attacks fluctuate, and you don’t know when one is going to come?

No.

How often…are those attacks, I don’t know, every week, every month? Is…?

I have…the last one I had was about a year ago. This week I’ve had one, two… I’ve had three, very close to one another, and I don’t know whether this is related to the fact of this heart operation that I’ve had, has weakened my resistance, the heart operation and the infections I picked up in the hospital, which I never got over. I don’t know whether that’s affected it, but, um, they’d been a long time before then. They’ve not come very frequently, no.

You’ve already explained one specific problem that you’ve got, so obviously when you’re being sick, you can’t take the diabetes medication. Are there any other issues with your medicines, that you’d like to talk about?

No, that is the major thing that struck me, when I was laying there, thinking is… is part of this problem diabetes related? I can’t… I couldn’t figure that out. I mentioned it to the doctor, but he said… he just passed it off, and I’m still not sure. I’d like clarification though to see if the diabetes is related, but I don’t… I don’t think it is.

Fred’s GP only works 2 days a week and he would have to wait 2 to 3 weeks if he wanted an appointment with her. He mainly has telephone consultations with other GPs.

I’m interested in what you think about your GP, which is something that you’ve already alluded to, and you don’t seem to be very taken with your GP?

No, the GP I normally see only works two days a week, and as a consequence, I think she’s overloaded with older people, ‘cause she’s very careful, and she specialises in diabetes, so I stay with her and she understands things. But, I’ve changed to others, and I’ve not felt confident with them.

So, the fact that she only works these two days a week then, she’s got a lot of patients, it presumably means it’s hard to get to see her when you want to.

Two to three weeks waiting time, no, you can’t get to see her. And the people that they send have…well they don’t send, they don’t send people, it’s a telephone call, what’s the symptoms… and we’ll send it to the chemist. Pick the tablets up at the chemist. They don’t see you.

Fred was discharged from hospital at short notice after a heart operation without adequate supplies, including dressings. Within 24 hours he was having to use paper towels instead.

I don’t think it was… I don’t think it was quite enough, because I was… I was told on the Friday morning, about half past nine, she said, oh we want you out of the ward today, she said, as quick as that, she said, you’re…we’ve got the bed needed by someone else, who happened to be Portuguese, who didn’t speak English. So I was out, so then I had to make arrangements for someone to pick me up, they didn’t offer an ambulance. And I rang my son, and he had to break his work to come and pick me up, brought me home. But I didn’t…they didn’t have a take home package, tablets, medication, and dressings, so when I came home we weren’t prepared…my wife wasn’t prepared for it. I came home on the Friday, and on the Saturday we were using paper towels as dressings. 

I’m trying to work out from the hospital’s perspective, what was the assumption? Was the assumption that you would have gone and…to your GP in order to get those supplies, or you would have gone out and bought them for yourself or…? 

Nothing said, we weren’t given anything, just parcelled off. Just…no description. And, um, they weren’t even sure, when I went back in, ‘cause I said to the girl, I don’t feel that you know what you’re doing. She said, we don’t know exactly what’s wrong with you. And I was told it was touch and go, that I survived.

Fred never knew why he was in hospital in the first place and was discharged with inadequate supplies. He was told he had picked up an infection whilst an inpatient. He is concerned about hospital cleanliness.

I’d literally come out of the hospital, and I was opened from throat to stomach, the wound was discharging white fluid of some kind and I had to dress it, we didn’t have any dressings, there should have been dressings advice, nothing, they just bundled you out because someone else was coming in. The hospital is greatly overloaded, the cleanliness is not to be desired, the cleanliness needs consideration. I had one day of wanting a shower, I wanted the shower room and it was like they’d been cleaning cattle out in it, and I had to tell the nurse in no uncertain terms that I couldn’t shower in those conditions, and to clean it.

I was moved when I was taken back in, and they admitted, um, that had, I’d got contamination, and I had someone attending me who couldn’t even insert the needles for injections, and I just said, stick them in the back of my hand. But it was rather difficult. I was in six weeks, having tests done, and I still… I still don’t know what was wrong, what the problems were. And as a consequence of this I’m still… I still think I pick up any… bugs or anything that’s going, I seem to pick them up very easily, and it doesn’t come in ones, I’m getting them in twos. I’ve had flu, passed it to my wife, she’s passed it back to me, I’ve passed it back to her,

Fred’s treatment for Meniere’s disease comes with a warning not to touch the tablet as it might cause blisters. The side effects are worth putting up with because the tablet is effective.

Are there any other issues with your medicines, that you’d like to talk about?

No, that is the major thing that struck me, when I was laying there, thinking is part of this problem diabetes related? I can’t… I couldn’t figure that out. I mentioned it to the doctor, but he said… he just passed it off, and I’m still not sure. I’d like clarification though to see if the diabetes is related, but I don’t think it is.

How many drugs, do you take, on a daily basis?

My wife will tell you that, she… six, eight, ten… and this one makes it eleven. Eleven different drugs. I’m not sure, I’m not sure how this will impinge on it, because it says, don’t touch the tablet, it’ll make your fingers blister. I think, if it makes my fingers blister, what’s it going to do to my inside?

Is this the one that’s…that’s done something to your tooth?

The ones I was doing, yeah, dropped out [laughs].

I had to put them on the gum, and let them dissolve on my gum.

And what are those tablets for?

This is for this, Meniere’s disease, syndrome.

Okay.

Yeah.

And are they effective?

It seems to take it away, yeah, it takes the dizziness away. As such, I’d say that if my teeth drop out, it’s better than having this se…feeling of wanting to vomit all the time, and this dizziness. The dizziness is terrible. It’s just…the room spinning, and you can’t focus. Instead of a still picture, it’s like a cinematograph, the old cinematograph, going round, and the pictures are just skipping in front of you, and, er, you can’t control anything, and then you want to be sick. It’s…like violent sea sickness.

Fred is concerned about cleanliness in hospitals as he caught an infection as an in-patient. Whilst in hospital he recommended that nurses make electronic notes on iPads, which was taken up by the Trust.

The other major topic, I would say is, people must…and I state, must, clean their hands walking in surgeries, and clean them coming out. There’s facilities there, and there’s…ninety nine per cent of the people going in surgeries do not abide by this cleanliness routine. I think it should be insisted on, and in the hospitals as well. The other thing I’d say about the hospitals, I think the beds are uncleanliness, people are allowed to come in from outside and they’re not being restricted, and they just wander around the wards, and I don’t think it should be done. Cleanliness in, from my experience, cleanliness in the atomic energy business, atomic, any industry, it was far cleaner than the hospitals. The hospitals couldn’t touch the atomic energy cleanliness routines, and I think it’s causing a lot of problems.

I don’t know if anything will be done about them but…they go through these things, but people just don’t abide by cleanliness, just…I think they could really do with, like a sheep dip, to walk through, to go into the wards. But people come from outside, and when you’re struggling after major surgery, I think something should be done. 

And the showers…I must…I must confess, I lost my temper a few times, by not being clean. But I didn’t like remonstrating with the nurses, because some of them really worked hard. And the biggest part of the day, the biggest part of the day, and nurses I observed, was writing up, writing up longhand, and this is why I made the suggestion, I followed it up through the Ticker club, and sent…I asked the Sister, the Matron, could they get iPads for the nurses? And I explained, I said, I’ve observed how long it takes longhand for them, writing these notes up. Oh no, we can’t afford them. And then I said, well surely, if you’ve got one or two, they not all expensive? Oh it won’t be safe. And I said, well you can buy a safe for a hundred pound. The senior one coming on, on shift, signs it in, and signs it out. Well…and just making excuses for it. But I carried this on with the [patient support group], which is a charity, to get this, and they said they had other things, but since then, they have switched, and they are now starting to use them. The only thing is, at the last meeting, I asked how successful it had been, and they said they’d had the first one stolen. So, that beggars belief about how people feel about stealing anything, but it is working and they are using them. 

And the other thing they’ve not got, that the hospitals aren’t fully aligned, IT’s not taken over records. I think there should be full records kept, even though it might be broken into, because I think if you travel, and you have an accident at one end of the country, then you could go on a computer, you could pick up all the details of a person’s medical records, and it can help them that way.