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Living with multiple health problems

Recommendations for improvements in care for people with multiple health problems

The people we interviewed were routinely asked about what might make their care better. The focus of this topic is on the things that doctors or health services could be doing better in order to meet the needs of people with multiple health problems. 

Two main issues came out of the interviews: 

•    the importance of good communication with health professionals and 
•    the need for better continuity of care (see ‘Continuity of care’) including more reviews / follow-up appointments and attention to patients’ emotional needs. 

The need for better links between physical and mental health care is highlighted, specifically where people need psychological support following a diagnosis or major illness event. Other specific issues mentioned included a perceived need for better access to more accurate patient records, the importance of cleanliness in health facilities and a potential role for patient advocates. The importance of doctor and patient jointly prioritising also appears important. 

Some doctors were criticised for the manner in which they communicated with patients. Graham suggested that time constraints mean that GPs may not take the time to listen to patients properly. As a result of courses he had undertaken through the Open University he believed that doctors who listen properly would get a lot more information out of their patients. Mohammed used to work in the health service and feels that many patients would be fearful of medical terminology and rather have things explained in “layman’s language”. Ronald was also critical of doctors who seemed not to listen properly to patient concerns, although he explained this state of affairs by the fact that GPs seem to be overworked. He saw this as a problem with the health system rather with individual doctors themselves.
 

Graham feels that doctors don’t always take the time to listen properly to patients. He has undertaken courses on effective medical communication that highlight the gap between reality and the ideal situation.

Graham feels that doctors don’t always take the time to listen properly to patients. He has undertaken courses on effective medical communication that highlight the gap between reality and the ideal situation.

Age at interview: 66
Sex: Male
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So you don’t have a very high opinion of your GP by the sounds of it?

Well, [laugh] sometimes. They’ve got a lot of constraints and I suppose we don’t help. I’m on the…you know, one of the biggest problems I think with GPs, and it comes out in the courses that I run, is they don’t take time out to listen to people properly, or they don’t, you know…I’ve done a, I’ve been doing some courses online that interest me from the Open University. They’ve got some new courses on the FutureLearn there. And sometimes they’re three week courses, six weeks, you know, a couple of hours a day. And one was on medicine and adherence, and they just, you know, most of the doctors give you drugs, you know, to see if they help. If they don’t they give you another drug, you know, and they seem to be, you know, seeing which one works, because not all drugs work well with people. And, um, you know, they don’t get down the root. And there was... this was a, one of the leading hospitals in, I think it was St Bartholomew’s, wasn’t it, in London, or one of…one of the saint hospitals. And they were trying to teach GPs how to talk to the patients properly, so they would, you know, take their medication properly.

And it was quite funny, they were interviewing them and, you know, they were showing you how doctors normally do things, and then, you know, how they should, you know, talk to patients properly. And, you know, when you have that interface with people, you know, when you’re able to talk properly, you get lots more information out of, you know, and they start realising why they should take their medication properly [laugh].
 

Mohammed would like professionals to use layman’s language when talking to patients as medical jargon can induce fear. He would also like to see more checks on inpatients by nursing staff.

Mohammed would like professionals to use layman’s language when talking to patients as medical jargon can induce fear. He would also like to see more checks on inpatients by nursing staff.

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If you could give any messages, firstly, to healthcare professionals to improve the care that you receive, is there anything that you would want to tell them?

Just possibly a slight request, otherwise no instruction, but I request for clinical staff to possibly explain to the patients in layman’s language about the illness and the treatment they envisage to give, and that and that could be quite helpful. Because often people hear a lot of clinical names and that puts this like fear, element of fear in them when helping basically, maybe virtually very little. In terms of I know there is a shortage of nursing staff but I think when a patient is admitted to a hospital, it is a frightening environment for some and it would probably be nicer if there was a reasonably frequent visit, just a visual look to keep them, give them that element of satisfaction that they are being looked after, rather than occasionally feeling they having the feeling of being thrown on the scrapheap and even as little as a young student nurse is popping and saying, “Hello, are you feeling okay?” So something is happening, whether anything is happening is irrelevant but it gives you that satisfaction that something is happening. And I think that that would be the only literal request that I would have, rather than advice.
 

Ronald suggests that his GP does not always listen properly to his concerns which, if addressed could improve his quality of life. He believes this happens because doctors see so many patients.

Ronald suggests that his GP does not always listen properly to his concerns which, if addressed could improve his quality of life. He believes this happens because doctors see so many patients.

Age at interview: 70
Sex: Male
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Could I just ask you if you’ve got any messages that you might give medical professionals, about how they could improve the care that you receive for your different conditions?

No, most of them are doing a very, very good job. The ones that I visit quite often, it’s just there just needs to be a little bit more care and attention. If somebody has asked you about a problem more than once, then please listen and do something, you know, because it’s not a waste of time. It might be a waste of time in the GP’s eyes but to the patient who’s got to live with it, it could mean a better quality of life.

Okay. Do you feel that the GP prioritises different things to you yourself or.

No.

Is the match about right or? 

I don’t know really this, you know, it’s a case of I would think, there’s a job to do and he just sees so many people, and it’s just one of those things. I think it’s the system rather than the doctor.
Other systems issues were raised by Angela, who was critical about the length of time it took to get psychological support after a stroke. She put this down to doctors not listening to her properly, which again pointed to communication issues. Her feelings were reinforced by apparent inaccuracies contained in her medical records. When asked how to improve services, Lottie again pointed to communication problems, doctors being seen as sometimes difficult to understand and not always open with patients. Andrew spoke about communication around treatment decision-making. Whilst patients are supposed to have “choice,” he believes most people expect the doctor to point to the correct treatment in a given scenario. He also reported being upset by being given too much medical information during the course of investigations.
 

Angela felt that psychological support came too late after a stroke and she wonders whether doctors were listening to her properly. These concerns are confirmed by apparent inaccuracies in her medical records.

Angela felt that psychological support came too late after a stroke and she wonders whether doctors were listening to her properly. These concerns are confirmed by apparent inaccuracies in her medical records.

Age at interview: 46
Sex: Female
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If I could ask you now, if you had any messages to medical professionals about how they could have improved the care you received, or in the future going forward, how they could help you more, what would you say to them?

God, that’s a hard question. I think I already have indicated to the neurologists and to the stroke department that, you know, the psychological support came two or three months too late. 

It it’s sometimes I feel that that they don’t listen enough, you know. I’ve seen letters and reports where they’ve got their facts completely wrong. I mean the report from the neurologist stated that I had a long history of depression, which is not true at all. My depression has been purely as a reaction to my stroke and to the way that work has treated me. I don’t I don’t have a history of it at all and there’s just a few other little inaccuracies here, there and everywhere. I think, ‘are you actually listening to me?’

Right.

Yeah, just I’d like them to listen more I think.
 

Lottie asks health workers to speak clearly and slowly without using long medical words. She wants doctors to be honest with patients and also consider their quality of life.

Lottie asks health workers to speak clearly and slowly without using long medical words. She wants doctors to be honest with patients and also consider their quality of life.

Age at interview: 37
Sex: Female
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If you could give any messages to medical professionals about how they could improve your care or care for somebody else who might be living with your conditions, for example, what might you say? What might you tell them?

Listen. Talk very clearly, very slowly, don’t use great long medical terminology that somebody is not going to understand. Consider somebody’s quality of life as opposed to just simply curing the problem. Be honest and, regardless of whether it means you’ve got to fill out umpteen forms, if there is specialist care available to that patient, refer them to it… and don’t just use that person as a drug testing bay.
 

Andrew thinks that ‘choice’ in treatment decision making is an illusion when people would rather be told what the doctor thinks about treatment. He believes too much information can be damaging for patients.

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Andrew thinks that ‘choice’ in treatment decision making is an illusion when people would rather be told what the doctor thinks about treatment. He believes too much information can be damaging for patients.

Age at interview: 65
Sex: Male
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Is that something that you’d ever ask for or?

What would I ask for?

For an appointment or a check-up or.

With a cardiologist?

Well, I’ve always, I think that’s probably the last relic of the of the deferential patient culture really, is that I think you just have what you asked, what you, you know, when they ask you to go, you go and they talk about choice and all that and I think to myself, well, I’m not sure what choice means. Does it mean, when I, do I want to go to [town in the north] or do I want to go to [town], you know. I might as well go to [town] and I think there are, there’s a sort of bogus culture of choice around. I mean for instance, when my prostate cancer was diagnosed, I could have elected for a prostatectomy or I could have elected for, you know, radiation therapy or various other things, which would have been inappropriate. So in the end, you’re in their hands because you’re saying to them now, “What’s the appropriate treatment?” You know, they then say, “Well, you have a choice. You have this, this, this or this.” You say, “Well, which do you recommend?” At which point, they say politely, “Well, it’s a no brainer. That one is the obvious one and those three are ridiculous.” But you’ve had the choice and so it’s a it’s a funny business this choice thing really. And, so I think we’re still probably at the end and probably always ought to be at the end of the position where we do want the medical professionals to suggest what we should do, but with as much information as possible. I think they’re, where they go wrong nowadays is I think they can frighten people because I think they’ve actually gone from, I don’t think I’ve ever been unnecessarily frightened by them. Well, I have once, actually. Yes, I was, have once. When I was in hospital first time I think, the surgeon had come along to the bedside and boomed that they’d found something that they couldn’t explain inside my thing and they were investigating it. And I said, “What is it?” And they said, “We don’t know yet. We haven’t investigated it yet.” And I thought well, why don’t you just belt up until you have because I then decided I was dying, that they’d found, you know, a malignancy right in the middle of me and it was going to finish me off. Which is, you know, with prostate cancer you’re, with pancreatitis you, pancreatic cancer is the one you are frightened of because, you know, there is, there’s a not much chance of recovery from that. So there I thought well, too much candour, too much information can actually be quite frightening. So somewhere in the middle of that is an answer to whatever question it was.
Specific issues raised by the people we spoke to included improvements to electronic patient records, cleanliness and the use of technology in patient-facing care.
 

John wants to see better health records in the NHS accessible to patients and anyone involved in their care. For example, it would help with getting prescriptions on holiday.

John wants to see better health records in the NHS accessible to patients and anyone involved in their care. For example, it would help with getting prescriptions on holiday.

Age at interview: 77
Sex: Male
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I want it so, so that patients can ha…not only have accurate access to, to their records but that they can allow other people to have access to them, so if they’re away on holiday, someone like me, down in Cornwall, decides I’ve got a problem, go to the GP surgery, I don’t want them to have to be ringing the local trust here or the…my GP here and not get an answer or what-have-you, I want them to have a look and, and for me to say, yeah, that’s fine, I’m… I want… If I, decide to stay on for an extra couple of weeks on holiday somewhere ‘cause I like it, and say, oh dear, I’ve not brought enough medications with me, I want to be able to go to a pharmacist and say can you give me a pharmacy prescription please that’s my reference number, that’s my NHS number, you can go on, go on there and get my medications off. Er, can’t do it. 

So for an old duffer I’m actually way ahead of most people on health informatics. Besides which, I’m a board member of the UK Faculty for Health Informatics. And I, you know, I can see the sort of, the 13, 14 year olds now in five years’ time saying, what do you mean I can’t see my records? What do you mean they’re not digitised? You know, what do you mean they’re only on paper? I can do my bank, I can order my…I can order groceries from Waitrose and Tesco, have them delivered. I can go on to Amazon and, have medications off there, non-prescription stuff, delivered to me tomorrow morning. You know, why, why, why are we messing about with bits of paper…

That, you know, you’ve got a, you’ve got a medical record at the hospital this high that takes half an hour to find, why can’t you just look at it.

So, yeah, my hope for the future is that we do get a workable, electronic health record which is accessible on demand by whoever needs to have access to it. Sorry, that’s my rant for the day. 
 

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.

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.

Age at interview: 85
Sex: Male
Age at diagnosis: 40
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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.
Lee and Leonard were quite happy with their care at the time of the interview and didn’t see a need for any improvement. Lee’s, “If it ain’t broke, don’t fix it” attitude is a reminder that change for change’s sake may not always be a good idea.
 

Lee describes herself as a happy patient at this moment in time. When asked how her health care could be improved, she replies, “If it isn’t broke, don’t fix it.”

Lee describes herself as a happy patient at this moment in time. When asked how her health care could be improved, she replies, “If it isn’t broke, don’t fix it.”

Age at interview: 49
Sex: Female
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And if there was something that you could say to your healthcare team, how they could improve the care that you receive, what would you say, if anything?

Given that I’m reasonably content with how I’m being treated medically in terms of medicines now, is if it isn’t broke, don’t fix it. If I need help, I’ll ask for it so and actually, I’ve no reason to think this latest practice is going to, start trying to meddle with what I’m doing and how I’m doing it because it’s clearly working. And as long as long as that remains the case, then I shall remain a happy patient.
 

Leonard says that health professionals have been a tremendous help to him and he couldn’t ask for more help from the health system in his area.

Leonard says that health professionals have been a tremendous help to him and he couldn’t ask for more help from the health system in his area.

Age at interview: 73
Sex: Male
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And the amount of help that you do get.

Yes.

Is that about right or is it too little, too much or?

I couldn’t ask for more. No, no, I couldn’t ask for more. I think sometimes at the hospital they are a little bit slow in doing things but no, I honestly couldn’t ask for more out of the system we’ve got in this area. I think it’s second to none I really do, couldn’t ask for more speed from paramedics in this area. They’re fantastic. I’ve had them several times, I have to say, but on each occasion they’ve been just minutes away and it’s, yeah, oh and they’re so they’re so polite and well-spoken and what’s the word I’m looking for? Attentive. My doctor is wonderful even the emergency doctors I have to see, I have to concede, they’re pretty good as well [laughs]. I didn’t think there was anything better than my doctor but they’re, well, they’re as good as, if nothing else. And I, the reaction I’ve had from the staff and nurses at our local hospital has been [prrrr] yeah, sometimes you think you’re lucky to be a patient, rather than rather than a cadaver [laughs]. So yeah, I’m happy with it all.

Would you have any messages or advice or recommendations to give to your healthcare team at all?

No, I’ve found them one hundred per cent cognitive of what they should be doing and they were a tremendous help, and they really knew what they were talking about and so does my therapy nurse now, [nurse name], she knows exactly, she says, she says to me, “I keep an eye on you.” She does [laughs]. I nearly fell off the treadmill this morning because I felt so bad and she said, she was there and she said, “See, I was nearly just about to grab you.” I says, “Thanks, [nurse name].” [laughs] No, she’s also, I mean I suppose you’ve got to bear in mind that there’s quite a, sometimes there are quite a lot of people, who have got or are just coming round from heart problems or on therapy and [nurse name] I think has got about, well, she, I think she could be inundated quite often because therapy you generally get three or four people in charge of, three or four nurses in charge of your rehab. But therapy, you’ve only got one, sometimes two and it’s one, [nurse name]’s a nurse and the other, I can’t remember his name, I think his name is [employee name], he is a an employee but he’s been taught how to react to people in therapy. So yeah, I think the back-up there is superb, yeah, really good and they’re so friendly, you know, so friendly. Pleasure going really [laughs].
After doctor-patient communication, the next main issue mentioned concerned the need for follow-ups and reviews. On occasion, these criticisms were centred on transition arrangements from hospital back to home. For example, people who had been in hospitals and rehabilitation units following a stroke found the levels of physiotherapy provision inadequate when they returned home. Andrew and Derrick both felt a lack of ongoing care for their heart conditions. The need for review and follow-ups also seemed to be tied to the expressed need from some people for psychological and emotional support, if only along the lines of a friendly human being taking interest in how they are getting on. However, GPs were seen as busy and overworked with large patient lists and limited appointment slots. Therefore, the likelihood of people feeling able to raise wider emotional issues appeared slim given the reported constraints on consultation time. Madelon found it difficult to get around and couldn’t understand why she was required to make her own way to the surgery at her age. Jean would like to have someone come in daily to help her wash and dress and make sure she eats and takes her medicines.
 

Madelon doesn’t think it is fair that she has to get herself to the surgery when she is aged in her 90s. She believes somebody should visit to check on her at home once a month.

Madelon doesn’t think it is fair that she has to get herself to the surgery when she is aged in her 90s. She believes somebody should visit to check on her at home once a month.

Age at interview: 93
Sex: Female
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Okay, and if you could give any messages to your GP or to nurses or hospitals about healthcare and what they could improve, what might you say?

I think for older people is you shouldn’t be expected to get down to the surgery like you are because it’s not easy is it, expensive with taxis or voluntary cars I use, yeah. I think, I always thought that they visited you when you was after a certain age sort of once a month but.

Right.

You don’t seem to do, which would be a good idea wouldn’t it.

Really, just to keep an eye on you, but they don’t that unless you’ve got some, you know, you send for them, unless you’ve got something wrong.

So you’d like a more of a regular.

Yeah, like once a month or something like that, yes, it would, yes.

Okay. Rather than simply going when you’ve got something wrong.

Yes, that’s right, yes, that’s right yeah.
 

Chris criticises the amount of physiotherapy available to him following a stroke. He feels he should be routinely followed up every 12 months. He hasn’t spoken about the stroke with his GP, who focuses on other issues.

Chris criticises the amount of physiotherapy available to him following a stroke. He feels he should be routinely followed up every 12 months. He hasn’t spoken about the stroke with his GP, who focuses on other issues.

Age at interview: 68
Sex: Male
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As I said to you before, if I had one criticism that I think the, the local surgery should certainly, make sure that there is a bit more physiotherapy to make sure that you go to clinic or something on a bit more regular basis. I know it’s, it can be up to you but it it’s far better that they, that you’re promoted to do it and also that I think that I know that doctors are far, you know, they’ve got too much on but I would have thought that at least twelve months, once every twelve months, you should have some kind of consultation just to say, “How are you developing?” and so forth on this, rather than having to go to the surgery. But unless you go and see the doctor, make an appointment and go and see, you’re not seen as such, whereas I think it’s, you should have at least a twelve month check-up.

Okay, and is that something you’ve felt you’ve been able to raise with your GP at all or?

I haven’t I haven’t suggested it, no, no. And I had you know, I’ve had to go and see her on a couple of occasions for other things but the stroke is not mentioned at all, which is, well, I suppose that if it’s not causing you any trouble, there’s no point bringing it up but, you know, it’s mentioned as such.
 

Barry would like a review of his COPD and his medicines. He is concerned about statins after reading a newspaper article on possible side effects. He doesn’t feel the doctor has sufficient time to address such issues.

Barry would like a review of his COPD and his medicines. He is concerned about statins after reading a newspaper article on possible side effects. He doesn’t feel the doctor has sufficient time to address such issues.

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If I could ask you now to tell me any messages or advice you might have for your, for healthcare professionals, in how they could help you better? What would you like that they might be able to do that could improve things for you?

I realise with my stroke, there’s nothing they can do. You’ve lost your brain cells and that’s the end of the story. They don’t regenerate but with the COPD, I would like a review on the point of view it doesn’t happen. I would like to see about my breathing initially, plus medication but you’ve got to and to stop I take statins and it said in the paper they give muscle fatigue. Well, I’ve got terrible muscle in my arm, just a just a sort of terrible but can’t say anything because I can’t stop statins [laughs]. I’d drop dead [laughs]. I can put up with it, you know. But I would like to be reviewed but I can’t see, it’s like you coming today, the doctor just hasn’t got that time.
As well as a need for reviews and follow-up, people also referred to the need for better continuity of care (seeing the same professionals over time), or joining up of different bits of health service provision. This forms the subject of a topic in itself - Continuity of care. Anne Y’s interview suggested that people might feel that seeing the same doctors was more important for one condition than for others, as she did in relation to epilepsy where the consequences were seen as far more serious for her than her other conditions (see also ‘Prioritising multiple health problems’). For Michael Y and his wife Pauline, the need for specialist epilepsy input appeared to outweigh all other aspects of care. Tammy felt that GPs needed to know more about specific conditions such as epilepsy, and she and others said they would like specialist doctors to be more sympathetic to everything that was going on in a person’s health and not just focus on managing a single condition. Fiona would like to see more communication between different hospital departments and health professionals.
 

Epilepsy is of more concern to Anne Y than asthma. With her epilepsy, she most values the continuity of being able to see the same specialist consultant. She doesn’t mind who she sees for asthma care.

Epilepsy is of more concern to Anne Y than asthma. With her epilepsy, she most values the continuity of being able to see the same specialist consultant. She doesn’t mind who she sees for asthma care.

Age at interview: 61
Sex: Female
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If you could give any messages now to healthcare professionals about ways they could improve the care that you receive, would you have any messages to give to them?

No, I mean my, I think my main my main thing is continuity. I don’t like change now with regards to the epilepsy. So but then again, that’s something that, you know, you can’t really help if doctors leave or they change jobs, but I think it’s just being able to speak to someone who you feels knows you.

So that you’re, it’s not a stranger, which I’ve had a few sessions of that when doctors have changed frequently.

Right. 

But I think it is just the continuity really. Again, unfortunately, in my case, I don’t really take the asthma as seriously as I do the epilepsy. To me the epilepsy is of more concern, so I don’t really mind who I see regarding the asthma, you know, and they just check my breathing, and that’s all I really think about with that. So I don’t count that as a serious situation but the epilepsy is the one that, obviously, I’m more obsessed with, if you like.

In as much as what treatment I get or really just who I see really to give me advice, if I need any, because I feel if this consultant leaves, I’ll have to start sort of building walls again with another one to. 

Right. Right.

Get the same sort of care so.
 

Pauline describes that the key ingredients in her husband, Michael Y’s care would involve a sympathetic person trained in epilepsy who can be a friend to him when he is having a seizure.

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Pauline describes that the key ingredients in her husband, Michael Y’s care would involve a sympathetic person trained in epilepsy who can be a friend to him when he is having a seizure.

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If you could describe the perfect support system for yourselves, with Michael’s conditions.

Yeah.

What would be the ingredients? What would be involved?

For support for Michael, to have somebody with a complete knowledge of epilepsy and the complexities of epilepsy, to be able to be with Michael whereby they’re not frightened if he had a seizure and they can cope with it. Be more of a sort of pal, sort of a friend.

Whereby it’s not seen as a support worker. It’s just like, “Oh, such a body is coming today.” You know, as if it was a family friend or a that would just treat Michael as a person, not as a person with epilepsy or his bronchiectasis, because that needs sorting out every day, but somebody that can sort of look through the person that has epilepsy and see him, not as a person with an illness, not as a person that might have these problems, but as a human being that Michael is. 

But, you know, he’s not stupid. He’s not mentally ill. It’s not a mental condition that people sometimes think it is.

But he is a normal person that can walk, that can talk, well, he’s struggling with walking at the moment, but that can walk and talk and communicate, apart from if he has a seizure.

But, you know, somebody that understands that and doesn’t want to turn away or walk away or say, “Oh no.” You know, like, “He’s a bit doolally, I don’t want this.” It and that, but just somebody that has the sympathy and the understanding of a person with a brain abnormality. You know, it’s not a mental illness. It’s just a medical abnormality with the brain. 
 

Tammy feels that GPs don’t know enough about epilepsy and wishes that consultants would look at the whole picture of what’s going on with her.

Tammy feels that GPs don’t know enough about epilepsy and wishes that consultants would look at the whole picture of what’s going on with her.

Age at interview: 45
Sex: Female
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Yeah, I mean I’m sort of separating the two, you know. There’s the consultant, the specialist and my GP. I’d like to say to the sort of GP level that they need to learn more about epilepsy, certainly the chap I met who didn’t, you know, in my mind, almost didn’t seem to know what he was talking about and he probably didn’t, you know. That’s the truth. But again, he was just taking almost precautionary measures. Yeah, definitely, to and, you know, it’s funny when you weigh up what a GP is but I think there’s a, in my experience, there’s been a big gap of their knowledge with the epilepsy in particular.

Right.

That seems to be quite you know, not ignored exactly but not understood, you know, for all that it involves. And for my consultants, I think I’d say, you know, could they find time to consider the whole picture of what’s going alongside something else. I think one day, maybe in the future, you know, you would have one consultant who was just driven to maintain your sort of well-being, you know, the whole of you and that’s definitely not the way it’s run at the moment. We we’re on a different sort of process aren’t we, altogether, appointments, you know, see the person who’s considered the specialist. They give advice, prescribe something and off you go, you know. 
Another issue mentioned was better access to hospital care. Andrew said he had waited a long time for treatment after being diagnosed with a heart condition and Fiona was waiting a long time to see a specialist about the impacts of epilepsy on her pregnancy. Loraine would prefer not to have to travel 40 miles to see a specialist doctor nor to have to arrange the hospital transport herself.
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