Talking to doctors and nurses

Many of the young people with chronic (long-term) conditions had a great deal of experience dealing with health professionals and clear ideas about how communication could be improved. For instance, they preferred to be asked ‘How are you?’ rather than ‘How is your epilepsy?’ or your arthritis, etc., when they went to see their doctor. They also disliked it if the consultant seemed to be in a rush or spent the appointment reading their medical notes to them (which often happened if they were seeing a doctor they didn’t know). (Also see ‘Getting on with your health care team‘.)

She talks about the things she dislikes when she goes to see her consultant. But says that her…

Age at interview 24

Gender Female

Age at diagnosis 17

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But I, one thing I find really annoying when you go and see consultants is that they read you your history. And I’m like, ‘Why are you reading this to me? I know. It’s my life. I’ve lived it’ you know. And they go through every like medical thing that happened in my life. And because I was a twin, and my twin died, like the fact that they’d always tell me that I found really strange, because it didn’t seem relevant. They were like, ‘Yes, so you were born prematurely. You were one of twins. Your twin died. Da-da-da. You had your first this here’ you know. And it just, that has always bugged me about going to see the doctor, because I don’t want to hear it really. Like it just seems a bit pointless. I feel like, ‘Can you not read that, and then call me into your little funny room and ask me how I’m feeling?’ Which I do find, like sometimes I do find what they ask you a bit like, like they say, ‘Hows your epilepsy?’ Like I think that’s a really weird question to ask. But I suppose there’s no other way of putting it. Or just like, ‘How are you? How have you been coping?’ I suppose.

And I, the new consultant, I’ve only met her once. And they often like seem like they’re in a bit of a rush. Which is quite annoying. Like because you don’t really feel like, because often, it’s often after I leave that I think of something that I want to ask them. And then like, ‘Oh, God, I’m going to have to wait for another six months before I go and see them again. And the, whos the other one that I saw? The epilepsy nurse. And I didn’t go to see her the first few, like I don’t remember being, going to see her initially when I first got diagnosed. And actually that would have been the most helpful. Because out of all of them she has been the nicest person. And I found her the most helpful because she’s much more chatty and like she just chats to you. And you end up, she ends up finding things out and being like, ‘Oh, well, you could do this. Or, because like I wanted to go onto the pill. And with a lot of epilepsy medications you can’t go onto certain pills and, because some of them don’t work or they’re contradict, yes, you know what I mean, they don’t, they just don’t work together.

They clash with your medication.

Yes. And that, she was really helpful with that and finding me the right pill to go on and stuff. She was really good at talking to me about that, and also more recently talking to me about if I ever wanted to get pregnant.

And if you have any questions, can you contact your nurse?

Yes, yes. Now I can. I only saw, but I only started seeing the nurse probably four, four years ago I think it was when I first saw her. And she’s been really helpful actually. And when I was having all my problems with getting employed because of my epilepsy, I spoke to her quite a lot. And I used to phone her up and ask her what, I mean because she was a nurse as well, and she said, when I told her that I wanted to go into nursing, she said, ‘That’s brilliant. Go for it. You know, don’t let it, you know, don’t let this stop you. And she, but I found the epilepsy nurse really helpful. I thought she, out of everyone she’s been probably the most sort of honest and upfront and like just kind about it as well.

Like doctors sometimes can be quite clinical about things and sort of forget that you’re a human being, and just see you as a condition rather than thinking about how your life is. That would probably be my biggest criticism of the consultants that I’ve seen is that a lot of the time they see you as your illness and not as your person. Which I suppose is really difficult for them because they see hundreds of people all the time. And, yo

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Most of the young people we interviewed said that they wanted honesty and straight-talking from their doctors about their prognosis, treatments and the risks involved in the medical procedures. They think that it is important for the doctor to avoid medical language and explain things using simply terms. One young woman said that her consultant was vague about her prognosis and that there was a lack of clear information and advice. A sixteen year old said that he doesn’t understand when his consultant talks about ‘mild abrasions’ and that the consultant seems to always talk to his mother rather than to him.

Newly qualified doctor want to show off what they have learned by using long and complicated…

Age at interview 16

Gender Male

Age at diagnosis 11

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James’I guess so ’cause a lot of doctors don’t like to tell me what’s going on, you see.

Why do you say that?

James’Well it’s just my consultants I think. They don’t like giving bad news. My consultant he’s called [name] and he always tries to. If he has to give bad news he’ll wait until he finds something good. So he could have the results in two weeks of whatever he’s done and you could wait two months because he’ll have to wait until there’s something good to tell as well. And when he has to tell bad news he usually waits ages to do it, you know, just in case something good will happen.

Always tell what. Tell the, tell the young person everything that’s going up and use small words. ‘Cause sometimes doctors use all the medical terms and terminology and sometimes even the parents don’t know what they’re talking about. So it’s like use words that every day, you know, use everyday English to explain what’s going on ’cause it’s a lot easier to deal with when you know what you have.

Have you had experiences of that, of not understanding when they use long words or medical terminology?

James’Well it’s, it’s more of that the new doctors, they like to impress people by using all these scientific terms.

What do you mean by new doctors?

James’You know just doctors that have come to a new ward or come to this hospital new and.

Mother’Newly qualified really because.

James’Yeah newly qualified.

Newly qualified ok.

James’And they like to use all these, these, this terminology because they can I think. It’s like, you know, we’ve learnt all this stuff we might as well use it. And they, I think they forget that we have no idea what they are talking about. We do not know what they are saying. They could just be saying blah, blah, blah as all we could, as you know, for all we know.

And what about your consultant, the person that sees you?

James’Now he’s always been very good. He’s always used quite, he’s always used small words hasn’t he? But he’s been with the hospital for ages, years and years.

Ok and the nurses. What’s your experience of the nurses?

James’Oh they’re very nice people. You know you. ‘Cause I’m with the same nurses all the time, you see, ’cause it’s, it’s the nurses that go to the hospital, stay there for years in the same place. So you get to know the nurses and they get to become your friends rather than just nurses. You know so it’s just a very friendly atmosphere, very nice people.

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He doesn’t always understand what the consultant is saying when talking to his mum during the…

Age at interview 15

Gender Male

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Now when he explains things to do with your condition do you understand when he talks to you or sometimes he uses language that you don’t understand?

He uses language that I don’t understand they’re like mild abrasions. I don’t get what he means by mild abrasions. And I, in the, and I do get, I understand some words like, he bruises easily, like he bleeds under the skin. And it’s like and that’s and just talks about that a lot of the time.

Do you say anything to him? Do you say, ‘Excuse me I don’t understand, can you explain this to me?’

No. I didn’t get a chance because he was, he were talking to me mum all, he was talking to my mum all the time.

So he doesn’t talk to you?

Well he sometimes does but not all the time but he just talks to mum mostly, my mum mostly about what he’s going to do, what I’m going to do.

Ok. And then your mum explains to you?

Yeah.

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Says that doctor’s language is ‘over the top and thinks that some can be insensitive and…

Age at interview 22

Gender Female

Age at diagnosis 16

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And what about the language they use to talk to you, explain things to you in the hospital?

Really over the top. They use lots of long words. I’m quite lucky because when I done my degree I did like psychopharmacology, and when they talk about medicines I understand it. And they talked like, I said, ‘Well. And they, they gave me one medication that was making me really drowsy. I think I said something, ‘Oh, yes, it’s the way it’s interacting with the histamine receptors, isn’t it?’ You should have seen their mouth drop. It like fell to the floor. But, yes, I do think the language they use is over the top. I do feel that sometimes they should simplify things. And I do feel as well that they’re really quite impersonal. Because, especially because I was waiting in the consulting room and they was talking about me outside the curtain. And I just think that’s very very rude, to talk about someone and they can hear you talking about them. And I mean just because it’s in a medical setting, I mean manners cost nothing. No, I think it’s very very rude.

And you were not part of the team sort of speak?

No, not with the hospital. With my GPs, definitely. Because they’re so supportive, like my GP. And even though my physio, he is a BUPA physio, they, they talk to each other as well. It’s really really really good. But I’ve never really felt that when I get into the hospital. That sort of gets a bit lost because it’s so busy, there are so many people in there that need help. And I understand they’re just trying to quicken things up by talking to each other out there. But that still doesn’t make me feel any better. So I can see why they do it, but it doesn’t make me feel any better.

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He has seen doctors and nurses for so many years now that he understands a lot of the medical…

Age at interview 23

Gender Male

Age at diagnosis 2

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Well fine when you were in the child based clinics you know, and the doctors talked to your parents. They don’t even look at you. You know they just talk to your parents. Just saying he has been on 7 mg now for. And you are thinking yeah I am here but you know what I mean. But that is a bit annoying but I am not being funny when I say this but I understand quite a lot of the language because I have been involved in the hospital so long and I have done stuff for the hospital. You know advising young people etc. So I do know a lot of terminology so, I mean, I know I am different in that respect, though a lot of people think what the hell is he on about, you know, but I do understand a lot of the terminology. And when they say you know the sino fluid, I know what that is. It means the bumps, you know, so I do understand a lot of that, but nowadays in the adult based clinics if I don’t understand I just say yes so what is that in English. I do have quite a – with my doctor now, the whole team, I do have quite a good relationship. You know I am a bit cheeky, but, you know, they are more like friends in a way, you know, well they might as well be friends because I will be going there for the rest of my life. So you don’t want them to be strangers, you know. So in that respect you know when I go now it is very, you know, it is relaxed. You can go in there and you just chat normally and you might say, the doctor might say something, you know, like you are going to have a scan or something, might give you the results and I will say yes, what is that in English you know what I mean. I mean I can email my doctor, you now you wouldn’t be able to do that five years ago. I mean that is how good a relationship I have got. I am close to the department and if I have got any problems or want to ask questions I can email. And they will get back to you the same day, you know, but if you get anything I just ask.

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Several young people found it rude and annoying when consultants talk about them – the patient – in front of them as if they were not there. One young woman remembers that, in the children’s clinic, her consultant used to ask her mother ‘How are Lizzie’s bowel movements?’ when she was sitting there right in front of him. A young man said that his consultant doesn’t like to give him bad news and so he waits until there is also some good news and gives them both together. Some young people said that, as teenagers, they were ignored by their consultants because they only talked to their parents. This made it difficult for the young person to ask questions about issues that were worrying them at the time – like drinking alcohol, side effects of medication, prognosis (future outlook for their condition) etc. Other young people had more positive experiences and said that their consultants do ask about what is going on in their lives and take a keen interest in their school or sport life. They said that consultants used this approach to engage more with the teenagers themselves.

She divides consultants between the authoritarian and the dismissive types. She prefers her GP…

Age at interview 28

Gender Female

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You know, I was 14 years old when, when it all started and I was, you know, going through pain, I was like, you know, I needed reassurance, I needed, you know, and I was talked down to and told that, you know, that I needed psychological help and you know things like that. So it makes a huge difference, I mean, how that is communicated to a person. And I’m not saying that you need to be handled with kid gloves or treated as a labour of love, but there’s a level and I think so many professionals, that I’ve come across, don’t know how to find that level. They’re so caught up with the, you know, the terminologies and physiologies and the psychologies of everything that they actually forget that they’re talking to a person with feelings who actually go home and actually struggle to live on a daily basis and putting it in the simplest terms. Who cannot live a normal life and yet you go in there and you’re told, you know, ‘Well that’s the way it is, you know, and you’re doing really well and pat yourself on your back and I appreciate it must be really hard for you but, you know, do you want to come back next month and we’ll talk again then’ sort of thing. You know, that’s one way of putting it, it’s kind of dismissive and then there’s the authoritarian who, sort of, you know, talks down to you and sort of says, you know ‘You could be doing this, you could be doing that’ and you’re sort of there thinking ‘Well I’ve come to see you to find out what I need to be doing or what could make it better in terms of you explaining it to me in simplistic terms so that I understand it’ and they can’t seem to break it down some of the long terminologies and you know everything else that comes from the text books. And there’s the fact that you’re in that black hole. So many people are so frustrated by it they take, you feel, it, it’s so, for example, you’re laying, it’s so hard to put into words because it’s so upsetting, it’s so emotionally upsetting and you go into, you’re in agony, you’re vulnerable, you’re emotionally on the edge, if you burst out crying or you get emotional, you feel, or you’re made, I feel, it’s probably unfair placing how I feel on somebody else because at the end of the day I’m responsible for those feeling, but, you’re made, I feel, that I’m made to feel that, if I cry or, you know, I lose control a tiny bit, then, you know, it goes, comes right back I suppose to the psychology thing. That they think that, that, that you’re losing, you’re depressed rather than ill, rather than in pain. If you’re in pain you get upset because you’re in pain and you’re frustrated and you’re angry because you’re in pain and you can’t do anything about it and nobody knows what to do about it. So, of course, it’s natural that sometimes you’re going to cry. But, if you do cry, they treat you, some, quite often they treat you like there’s some kind of hormonal person who can’t deal with things, you know, that can’t deal with life and you’re going over the edge and you’re going to need more anti-depressants otherwise, you know, you got to get the Prozac down your neck otherwise you’re not coping sort of thing. And so they loose you feel that they lose sight on what you’re actually trying to tell them, what you’re actually trying to communicate to them, what you’re actually trying to say to them, that ‘I’m upset because I’m in pain every day and because I can’t get out of bed every day and because I’m crawling on my hands and knees to be able to get out of bed every day, to get things down my neck and you get so angry, frustrated by trying to explain that so many times, to so many different professionals, each of which have their own agenda, have their own specialist subject, have their own specialist area of your body that they want to analyse, that they don’t look at the bigger picture in the first place, they look at the different little sections and don’t put it all together, then it just tires you out and you end

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She was diagnosed age 15 and found doctors talking to her mother instead of her. She would have…

Age at interview 29

Gender Female

Age at diagnosis 15

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Certainly at the beginning, yes. You know, when I was 15 and my mum was going into the consultations with me, yes, most of the information was going to her rather than me.

How did it make you feel? You were in the same room and they were not talking to you but to your mother.

Not great. You know, I didn’t really feel like I was part of the consultation or part of the decision-making process. You know, I was the one who was having the seizures and taking the tablets, but I wasn’t really involved in.

Just having it.

Absolutely, just, you’re the one that had it but, ‘Don’t talk. I think throughout I would have wanted more information and I would have wanted more opportunity to ask questions. Because it is a complicated condition and, you know, it’s difficult to, to get your head around. So I would have wanted more opportunity to ask questions. When I was a teenager I think I would have appreciated some time in the appointment without my mum there, and maybe to have discussed the more embarrassing topics like sex and like alcohol, you know, without my mother there. And I think more information about different options.

And what about the language they use when communicating with young people? Did they use an easy-understand language? Or did they use long words?

I guess it varies from consultant to consultant. A lot of doctors I think do use terminology that maybe young people, and also adults, don’t understand. You know, there’s a lot of different words for seizure for example. And somebody might call seizures fits and somebody else might call them something else. So if the doctor is using terminology and isn’t explaining it to you, it can be very confusing. So I think if there is something that the doctor is saying that you don’t understand, then not being afraid to just say, ‘Excuse me, can you just explain this?’ You know, it doesn’t mean you’re stupid. It, it just means that, you know, you don’t have a degree in, in brain surgery, you know.

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Some young people have found it helpful to write down questions in a notebook in between appointments to make sure they won’t forget when they see their consultant. Many have found it useful to bring a parent with them when seeing the doctor because parents could then ask the questions that they might not have thought to ask themselves.

She is 22 years old and finds it useful to take her parents along to the consultation because she…

Age at interview 22

Gender Female

Age at diagnosis 16

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Definitely, definitely. And also it might be nice like at the end just, what I do now is, I repeat back what I’ve heard. So if they say to me, ‘You’re going to get an appointment through in three months’ time. We need you to attend this and bring your X-rays. And so I’ll repeat that and say, ‘Right, so you need me to attend this appointment in three months’ time. Are you going to send this to me? Do I need to ring you up and request this appointment? And what do I do if the appointment doesn’t arrive?’ So I repeat back. And I always take someone with me as well. I take, the only people I trust to go is either my mum or my dad. And at the age of 22 I still take my parents to hospital appointments, because it’s useful having another set of ears there. And they can ask questions that I don’t think of. And say if I get something that I wasn’t expecting, I’m usually in a bit of, like last time I was in a bit of a shock. And they was asking questions. And as I came out of the consultation I was thinking, ‘Oh, why didn’t I ask this? Why didn’t I ask that?’ And I asked my dad. But he’d asked the questions for me. But I didn’t realise what was going on because I was a bit shocked.

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People who were told that they could text or phone their doctors and nurses if they had any questions said that this made them feel much more secure. (Also see ‘Getting on with your health care team‘ – for examples of good relationships between young people and their teams).

Getting treatment from the GP

Several young people we talked to said that they’ve developed a better and more personal relationship with their GP’s than with the hospital staff. In hospital they found it hard to deal with bossy or insensitive consultants. They found their GP’s easier to talk to about their emotions and problems to do with family and relationships. One young woman however, says that it’s difficult to go to see a GP on your own because they don’t pay attention to what you are saying. Another problem that several young people referred to was that receptionists are sometimes unhelpful and make it difficult for them to talk to their GP or get an appointment at short notice.

She feel very well supported by her GP but receptionists can be a problem when she needs to see…

Age at interview 22

Gender Female

Age at diagnosis 16

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You have a good support system there.

I mean my GPs are fantastic. I mean I’m so so lucky. Because there’s two at the practice, and they’re a husband-and-wife team. And if I can’t see one, I can always go and see the other. So they’re both involved in helping me. And my parents as well, they’re really, they’re really really supportive.

So it seems to me that when it comes to your GP you can, you have a good relationship.

Very very good.

In the doctor’s surgeries in particular. You’d ring up, I mean in one of my previous doctor’s surgeries, it wasn’t a very good one. I mean a very very large practice, very very large population. And I used to say, ‘Look, I really need to, to see someone. You know, I’m really quite in a lot of pain. And they said, ‘Okay, a week, and, and you can come in, in a weeks time. And I said, ‘Well, I really do need to see, to see someone. Or can, can I speak to someone on the phone?’ ‘No, the doctor doesn’t take no calls. I said, ‘But, you know, I really can’t wait that long. And because I’ve had that situation, I’ve ended up in Casualty. Because I’ve been in such an amount of pain and I can’t communicate with the receptionist that I need to speak to someone like quite urgently. And I know I’m wasting people’s time in Casualty. But it’s because I’ve had no other option. And it has been a problem in the past.

What I’d do is, I have rang back and spoke to a different receptionist. I’ve done that quite a few times. I’ve also discovered as well that there’s an NHS walk-in centre and you can have access to, if you’re really having that much difficulty getting a Gps appointment at your practice, you can go to the walk-in centre. You wait, you may have to wait a bit, but you can have access to a GP. Also I’ve, sometimes I’ve spoken to my GP and explained to him that is it possible like to communicate to the receptionist when I call, ‘You know, I’m not a time-waster. If I’m calling it’s because it’s a very unusual situation and I do really need some help? So I’ve done that in the past as well, and that seems to have helped.

So the doctor has spoken to them?

Yes. And also I don’t get angry and I don’t have a strop on the phone, because that’s the worst thing you could do. If, I mean before I’ve said, ‘Look, I, I need to see someone now and I’ve got quite stroppy and I’ve got quite rude. And if you’re rude to someone on the phone, and then they don’t care. They just think, ‘Oh, well, they’re just kicking off. They don’t really need to see a GP. So be persistent, but be persistent in a polite way.

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The GP ignored her when she was talking about a new treatment. She found it rude and felt angry…

Age at interview 22

Gender Female

Age at diagnosis 11

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And so I was still you know a young person away from home. And just going to a doctor that you didn’t know was you know a little bit daunting because I think when you ‘ with a long term health condition you ‘ I don’t know ‘ you get the feeling that you know a bit more than they do and then you kind of feel that they’re not really listening. And I’ve had an experience where I’d heard about a new a new a treatment for eczema a new drug and I wanted some information about it. And I went to see one doctor. And I had the information about this, this new pharmaceutical thing and she asked to spell it to her. So I did. And then she said, ‘Oh can you repeat that, I wasn’t listening. And so she actually said to me I wasn’t listening and that made me feel really angry. But you know she ‘ and for the rest you know for the rest of the appointment, she didn’t seem to acknowledge anything I said to her. She didn’t appreciate ‘ she didn’t acknowledge my knowledge and my experience because I told her several things that didn’t work for me and she pretty much ignored them. And just prescribed me something that in the past hadn’t worked for me at all and actually made my skin worse. So that’s my most negative experience, just feeling like you’re not being listened ‘ I wasn’t being listened to. And… but my most ‘ some experiences have, some experiences have been good. But I think the thing that… I lack is any kind of specialist, specialist contact because I don’t ‘ I’d prefer to… I’d prefer to know about more about eczema in general and I never get that information from the doctors that I see.

And I want to know you know the different’ the different types of eczema and what’s caused and what, what causes them and the latest research about it. And I think I’d like to, to know more about that and not always have to depend on doing my own research on the internet which you don’t know if it is reliable and things like that. So that’s ‘

How did it make you feel?

It made feel ‘ one my personal response was angry because I just felt my time had been wasted really. And I was feeling positive you know about going to see somebody about the problems I was having and then coming away no better off. And thinking well they’re supposed to, they’re supposed to help me and I’ve come away you know feeling still rubbish.

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The young people we talked to with asthma pointed out that their GP’s had always been very supportive and had been good at providing general advice but that it’s the role of the asthma nurse to give specialised and detailed information about their condition. They find GP’s good at helping them to deal with sudden changes in their symptoms (due to colds and flu, allergic reactions, etc.) while a nurse helps them with the information and advice for the long term control of their condition.

Thinks that GPs and nurses have different roles when it comes to help her with the long-term and…

Age at interview 24

Gender Female

Age at diagnosis 7

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Now regarding your GP how do you evaluate the kind of communication with him?

It’s good but I think it’s different with a nurse because when you go to see your GP it tends to be, you know oh this has happened this week and you know I need a fix for this. Whereas the nurse is more of a, more long-term care. You know I’ve gone to see my GP when and I’ve said, ‘You know I can’t breathe. I’ve, I think I’ve got bronchitis ’cause I always recognise the symptoms now. And so he says, ‘Fine you know give you some antibiotics. And so you don’t really get the sort of same care as you do with the nurse because the nurse talks to you about things in more depth and in a long-term sense. So you know, ‘Are you feeling different this month to three months ago. And you know looking at it like that rather than you know, ‘Oh you’re not very well today. Let’s do something about it. So sort of short-term fixes.

So it’s more like an assessment, a long term?

Yeah, yeah, exactly.

Based on your experience is there anything that they should improve regarding sort of how they relate to young people with asthma or?

It would have been useful to know about the nurse a while ago because I mean I only, I was only told yeah I think it was a couple of years ago. So I didn’t know about, I don’t know whether that’s a new thing that they’re trying to do or whether it’s being going for a while and I just didn’t know about it. But there’s, before that time there was nobody to really talk to about it and get that kind of advice. And I don’t know with my GP I don’t feel that I want to waste his time by talking about these things. Because I just, you know, they don’t have a lot of time anyway so you just want to go in and say, ‘Right this is wrong’ and he can fix it so you don’t go into depth and. And I don’t think. They, they don’t really volunteer that anyway. I think it’s more of a nurse’s role to give you that care perhaps [laugh].

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With the exception of young people with asthma most of the other young people we spoke to said that they don’t see their GP for anything to do with their condition. They see their hospital team for that. One young man with ME/CFS made the point that it’s difficult for both doctor and patient to establish good rapport because there’s no treatment for their condition. One young woman, also with ME/CFS, found that it was difficult to establish a relationship with her GP because she didn’t have any knowledge of what was happening to her, so was unable to talk about it in a clear way.

Says that doctor-patient relationship is difficult because doctors are used to treating your…

Age at interview 23

Gender Male

Age at diagnosis 15

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I went to see an ex GP who had become a remedial doctor and he diagnosed me with ME. I knew I had ME but I hadn’t been officially told it. No doctor, no doctor until I went to see this doctor with a special interest, this guy that I did this course with next year. He was the first doctor to say that I had ME. That was seven years after getting it.

I think doctors find it quite difficult because it is untreatable without wanting to be too negative. I mean it is treatable in the sense that you rest but doctors want to be able to give you a drug and they can’t do that. I think they find that really difficult. I have had some interesting chats with medical students because they really want to learn more about it. Because you know, I think at least one person already knows at least one person who has got ME and it is getting more and more common I think and so people ought to know more about it. But it was difficult eight years ago, just because someone, a doctor telling to rest is not good enough really and I am not saying it is their fault because I understand the situation but it is not good enough just to say rest because that is not substantial enough.

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A few young people prefer to avoid going to A&E departments because, in their experience, the staff there don’t really understand their condition or the treatment they’re following. It could be tiring for people, having to explain things to do with their health condition and treatment particularly to those not directly involved in their care.

Her diabetes and cystic fibrosis require a very specific treatment. She finds that apart from her…

Age at interview 21

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I do like my doctors, they’re all good. I think, if I did, I’ve always had someone that, with them being specialists that they know about the condition, they don’t, they’re not all deadpan me, they’ll just get on with it, whereas, if I go to see, I mean, when Dr. [name] referred me to Professor [name] for the CF for diabetes, she was quite the same, she was really good. But if I see anyone out of that field, seeing, one of them aren’t available, someone else is having to do the clinic, there’s a complete difference, you can tell they don’t fully understand the treatment that you’re taking. What’s going on, and especially with the diabetes and CF, I had to see a different diabetes doctor and he just didn’t understand why I was, my diet hadn’t changed, and he didn’t get the fact that I had Cystic Fibrosis, and I had to explain, and Gps, huh, huh, well.

What about Gps?

Well, Gps I just don’t go and see. They’re just, they’ve got, it is so general, they just don’t, I’ve had a GP ask me many a time, so when did you get CF? [Laughs]. Yeah its genetic, I was born with it [laughs] and I get things like, ‘Oh we need to go through your medication’, and they don’t understand. I’ve actually sat in front of a GP, and basically explained what was wrong, and what drugs I had to have, and they’ve just sat there. I could have said I want Black Tar Heroin and they would have wrote it down. Which isn’t a good thing, but they just don’t, A&E as well, I don’t get on in A&E. No I tend to wait until like my consultant is available and I’ll go and see them because I’ve been rushed into A&E before. I actually had a meconium ileus equivalent, which is basically a bowel blockage, and I had to explain that I had CF, I knew what was wrong and I had to said, ‘Look I’ve got this, I need to get, like have gastrograffin or something, and he did tests on us to make sure I wasn’t pregnant.” And I was like, I wasn’t happy. I was hysterical by this point because I was in so much pain, so he sedated us, and he didn’t even know I had diabetes, he hadn’t asked us anything, so I wasn’t a happy bunny. I got, I think I left at four in the morning, and at seven I was back at the hospital to see Dr. [name], who basically just touched like the top half of my stomach, and was just like ‘I can’t believe he didn’t know. I don’t get on with A&E.

He basically went when I told him things, he went outside, he read a book, they’d got a chapter on CF or something, came back in and told us what CF was and what treatment I was taking, I was like, ‘I know that, I’ve just told you.

This was a doctor or a medical student?

This was an A&E doctor. Scary [laughs]. So, I’ve got, I’ve got very little confidence in other doctors, rather than my consultants, which is, I think most people would say I was probably a pain in the arse for other doctors, other than the consultants, but they have [laughs], who wants specialist care? [Laughs].

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Getting on with your healthcare team

Consultants, nurses, physiotherapists and other health staff can all play a very important role in helping young people understand their condition and how it needs...