Seeing the GP: Advice and tips for young people
Bad experiences of a GP consultation
Although people told us about many positive experiences of good GP care, some also talked about disappointing appointments when things didn’t go so well. Problems included:
• lack of information, explanation, and involvement in deciding what to do
• wrong diagnosis or long time to get referred to a specialist
• rushed appointments
• poor relationship with the GP
• seeing different GPs almost every appointment
• lack of knowledge of mental health
• not being listened to or taken seriously
Lack of information, explanation, and involvement in deciding what to do
When Emma was diagnosed with type 1 diabetes, the GP sent her to hospital straight away. Although she was diagnosed quickly, Emma felt shocked – she didn’t know what type 1 diabetes was or how it could affect the rest of her life. She would have liked more information from the doctor who diagnosed her but ended up asking her dad many of the questions she had because he was also a GP. Emma felt that her own doctor should have made sure she was okay after giving her news of ‘a life changing event’. She had no idea she’d be on insulin for the rest of her life. Jalé, who was also living with a long-term condition (hypothyroidism), would have liked more information when she was first diagnosed too. Hypothyroidism is when the thyroid produces less thyroid hormone than it should, which causes the metabolism to run too slow. She sometimes felt that she was only taken seriously if she used medical terminology, and took a book with her when she went to see the doctor. She did a lot of reading before the appointment and had highlighted all the symptoms in the book that she’d been having. Sarah felt disappointed when she saw a GP about her mental health. She felt that the doctor gave her very little information about the various antidepressants that Sarah could consider taking in the future and didn’t discuss the other options available (see below).
I was reading through and I was learning about all the different hormones and all the different problems. So I thought, 'OK I'll sit and highlight every symptom that’s in the book that I feel I have.' So I sat and highlighted them all. I went through all the different conditions and highlighted them ones.
And I thought if I take this to a doctor, they can't ignore it. It's, you know, it's right there. And as I was reading and I was asking other people [on an online support group] , find out what they'd been going through and stuff like that, I found that a lot of them were actually being ignored and I was thinking, 'Well, you know, how's that possible?'
And so when I went back to the GP just recently, I did feel very nervous in thinking, you know, he's just going to ignore what I'm saying. I'm not going to get seen by a specialist. He's just going to say, you know, "You're fine." And he took his blood test and he said, "You know, your T4's fine, but you are a bit low on your TSH, do you want me to up your dosage?"
So I said, "I don’t want anyone to up my dosage anymore because the more they up it, the worse I feel. And I would just really prefer to have a referral." And he said, "OK that’s fine, I'll give you a ‘book and choose’, a book." And so that’s what I did, and then I was told wait until I could be seen in July.
Simon, who has juvenile arthritis and Crohn’s, felt that some GPs were a bit sarcastic when he used medical terms or when he seemed to know more about his condition than they did. His regular GP was very good, but when that doctor was busy he would see others who often gave ‘short, abrupt explanations with no clarification’.
Susan wished that the GPs she’d seen had given her more information about preventing fungal toe infections. She kept getting them and saw different doctors four or five times until she ‘just kind of gave up with it and put up with it for a long time’. She felt frustrated that the creams she used didn’t work and would have liked to have been told at the first appointment that, for severe, ongoing infections, tablets would have been more effective and that fungal infections can take some time to go completely.
I mean ideally I would have liked to just have a cream that worked, but I don’t…I think that probably mine was quite a severe one [infection] so I think…I think maybe if someone had been quite clear that oral was really the only thing that was going to work.
The other thing is maybe just expectations because I think I was expecting it would get better all the time I was using the creams. When actually I think probably by the second or third cream it was quite clear that the cream wasn’t going to clear it. But no-one actually said, you know, ‘You’ve just…you’ve either got to live with this or just take the risk of the medication.’ It was more just, "Oh don’t worry we'll give you the cream and it will go," yeah.
Can you remember the time, the number of years or months or years-
Yeah years, definitely years, yeah, yeah.
So at one point you felt like giving up, so you were trying things that you'd read about on the internet, that wasn’t working either. So did you decide at any point to just give up completely or to go back or to see someone else, what happened?
Yeah, for a couple of years I stopped completely and it just kind of rumbled along at a low level, so I was fine. And then I had to have high dose steroids for another medical condition and it became very out of control, and that was quite recently. So now I'm actually considering going onto the oral medication [laughs] after all of that.
Oh so it's been going on for quite a long time -
It's still going on.
So it's been going on for a good five/six years or so?
Longer probably, yeah absolutely.
Wrong diagnosis or long time to get referred to a specialist
When Aaron hurt his wrist playing football, his usual GP was away so he saw another. This doctor told Aaron that he’d sprained his wrist and would be fine. Aaron saw the GP three times because the wrist pain was getting worse but felt that nothing was being done. He then saw another doctor when he moved home to go to university. An x-ray showed that he had a fracture:
He said it was a sprain and the first appointment you went away thinking oh I’m not really sure about that.
Yeah, but then I trusted him because I guess it’s a GP and, yeah. But then the second time I went I had a bit more doubt. And the last time I went I was really doubtful and thought I’d just wait until I go to university and sort it with the GP there.
And I went to a university which has the facilities, a sports uni, it’s [name of] University, so it has all the sports facilities. And they’re used to seeing people like that, so yeah I waited until I was there.
How would you compare that GP to your family doctor?
Not very good. Just not even like being personal to the patient, just not really giving an interest in the problem. And the fact that I’d gone back and said that the pain had got worse didn’t really make much difference I guess in his eyes. But, yeah, I knew that if it was my family [GP] that at least I could have got scans which is what I was after. I even said that to the person who was replacing her.
You suggested it to him?
Yeah, I suggested it but he didn’t seem very keen. I don’t know why that was, might not have been, he might have his own reasons, but yeah.
How could the appointments with him have gone better, what would you have liked in the ideal world to have happened in those appointments instead of thinking, ‘oh I’d better wait until I get to University’. If those appointments had gone better, you know, how, should they have gone really in the ideal world?
Well cos I, when I just went in, as I say, he did these tests, these pressure tests, so I didn’t know what any of them were for. So I guess learning what he’s doing and why and maybe seeing, because I know some GP practices have the posters of say your hands and they go through, ‘oh it might be this part and this bone is connected to this and that might be why’. But yeah, none of that, so he did a couple of tests, didn’t tell me why, gave me a prescription for some pain killers, and then gone, that’s it.
And did you ever at that point look for more information or talk to anybody else?
I did some research online. But yeah, as I said, I just waited then until I was at university because I knew where I was going, and I knew that they would probably have a bit more knowledge definitely than that GP.
Winston saw two GPs and a nurse about a crooked (misaligned) toe, which he was told was a birth defect. Although it wasn’t serious and didn’t affect his health in any way, Winston felt self-conscious especially when changing after playing sports. He’d read online that people with similar problems had had surgery. He believed that the GP would refer (send) him to a specialist who could treat him, but never heard anything again.
When I did go for the – when I was in [place name] the doctor, he did look at my foot. And then they looked at it again when I was in [another place] again, and they just, they didn’t really say that much anyway. They just said, you know, that it had a defect or something like that and then that was it.
Did you feel they gave you the information that you were looking for?
No, not really because they didn’t, I didn’t get a letter or anything saying anything about it. So I wasn’t really sure if, because I think they were just, they didn’t really care about it simply because it was not like an injury or something that was an issue. It was just something that was slightly abnormal but it wasn’t going to cause an issue, so they just thought it was, you know, minor.
Can you remember anything about the doctor that you saw? So that, when you first went about your toe, can you remember the doctor that you saw, the appointment?
Yeah.
Were you happy with the appointment because at that point the doctor said – was it a he or a she?
It was a he.
He said that he would refer you and send a letter. Were you happy with that appointment?
Well not really. He didn’t, because I did ask him if they could do something, and then he said that “We'll let you know.” But nothing happened so it was, you know, it was a bit hazy but....
Rushed appointments
Lack of time and feeling rushed in appointments was a common worry. Young people said it could take them a while to feel comfortable and find the words to say what was troubling them. Shane saw a GP about his mental health and went back the next day and saw another doctor. The second GP prescribed him antidepressants after reading the notes from the day before. Shane recalled that this appointment felt very rushed.
I guess I was just being irrational with like my thoughts and stuff because I guess I just had broken sleep and stuff like that. So, with my thoughts, it was scattered. So it was go back to the doctors and then ended up with the medication, so yeah.
So that doctor that you saw, read the notes and saw, 'Ah this is the medication that’s been written on the notes.'
Hm mm.
Wrote a prescription for that?
Yeah.
So the doctor you saw the day before, you felt a bit more at ease with her. How about that doctor you saw the next day, can you tell me a bit about that doctor?
I was in the room for five minutes; was very, very rushed. They didn’t keep eye contact. They talked to the screen and not to me. And there was also a table in the way so it was very isolated and segregated between professional and patient.
Did that doctor introduce himself or herself?
No, they just said, "Hi," and, "Are you [participant’s name]?" and stuff like that and…
And did you mention that you'd been to see a doctor yesterday and had a chat about how you were feeling?
Yeah.
And then the doctor...did…was it a he or she?
He.
He. Did he ask you many questions or just said, "Ah, this is what's written and I'll prescribe you that."
Essentially just looked on the reports and prescribed me that. I guess it was just an off day for him, I don’t know. But yeah, I was in and out in five minutes and, yeah.
Sarah also felt rushed when she first spoke to a doctor about depression. She’d read about different antidepressants that patients can be prescribed but felt that these options weren’t discussed with her. The GP gave her a prescription but Sarah decided not to use it. Later, when she felt much worse, she saw another doctor who prescribed her a different medication.
Peter recalled that his GP was ‘quite sympathetic...but also quite brisk because they’ve got to get through quite a few people. And so it was sort of a whistle stop appointment almost. We got in there and then she just said what we needed to do and we left again quite quickly. So, for a long wait, it was a relatively short appointment.’ Peter didn’t mind because he was referred to hospital but felt that other people might have liked a longer appointment, more reassurance, and the feeling that they were being helped: ‘if it's just short and they don’t really care, then you feel a bit discarded’.
Poor relationship with the GP
It can be difficult to create a good relationship with the GP when people are regularly seeing different doctors or if they’ve had negative experiences in the past. Ish felt that it was hard to find a good GP and recalled going to the doctors’ four times with flu-like symptoms. The GP was reluctant to give him antibiotics but didn’t explain why. Ish felt that the symptoms he had should have been treated and that they’d caused him to have hearing loss in one ear. He felt that it was difficult to find a GP ‘that cares about you’ but that a good relationship with the doctor can help patients open up. He talks more openly to doctors he has a connection with.
So to me, if you’re open to me and you’re doing your job or maybe putting a little effort into it, then yes, I will open up to everyone and I will ask them. And just as an advice, your patient is more likely to tell them what exactly is going on, even if it’s something embarrassing or anything like that, if you actually have a connection with them. And then you’re actually doing your job correctly ‘cos if they’re going to give you mis-, you know like misinformation about what’s going on and they’re just going to say the basic, “You’re, yeah, the patient should know that they should be honest.”
But you know what I mean, if they’re embarrassed about it, like I don’t know, if someone’s embarrassed about the fact that they’re stomach’s constantly hurting or just, you know, doesn’t want to seem so called weak, they’re going to lie about it and they’re going to be like, “Yeah, the pain is just like, whatever. I can deal with it.”
But if you have a good relationship with your doctor you’re going to be like, “Yeah, it hurts so much I want to cry every single day.” You know, so to me that’s like, where a good relationship comes in, like you’re going to be honest if you have a good relationship with your doctor.
Mm. Yeah, absolutely.
I mean…..
Sorry, go on.
I mean, what I feel like just the whole system is like a little bit messed up, like most of the places that you’ve worked at, like throughout your life it’s all about what other people, you know, other people’s review about your career and how you do your job. [coughs] Sorry. I just feel like.
Do you want to stop?
Yeah, I have my tea.
If you want a break, just let us know.
Yeah, that’s the thing that how I feel like, I feel like the doctors are being kind of left out of that. I don’t think they should be able to, you know, advance on some level at their work unless they’re actually giving good service.
Seeing different GPs almost every appointment
Ambeya felt that her experiences of GPs were good when she was younger but had changed over the years because she rarely saw the same doctor. She found it difficult to build a relationship with ‘a family doctor’ that saw everyone in her family, as she had done in the past, and this put her off seeing them. She also felt that GPs expected young people to take more responsibility for their own health when they turned 18.
Well I think most of my experiences with GPs have been negative. I don’t really have many good things to say about them especially for the fact that my doctor keeps changing all the time. So, every single time I book an appointment for the doctor…you know usually if you have a family doctor, they’re supposed to have a family doctor, but every single time I go, it's someone completely different.
So, even though doctors type up their notes and stuff on the computer and all on our database or whatever it is, they don’t really understand us. Or they don’t even know how we were before, so I find it really uncomfortable. So, this is from when I was young, so now it's got to the point – I'm twenty years old now – and it's got to the point where I avoid the doctor as much as possible.
So now it's got to the point that if I do feel ill or anything, I just have to Google my symptoms and see what that’s related to and I just look up what medication and stuff I need to take. And I'll either go to the GP or I'll just go to Holland & Barrett [natural health store] because they do all these medicine home therapy stuff.
So, yeah, it's got to the point I've been avoiding GPs as much as I can now. Especially when after you hit eighteen, they think that you're old enough to look after yourself so, because that’s the vibe that they give off, I'd rather just not go to them at all. I'd rather just Google it.
So you said that you'd rather avoid going to the GPs?
Yeah.
And Googling. And is there anywhere that you go if you're feeling unwell – would you see a pharmacist, would you talk to your friends?
Well I do speak to my friends because most of my friends, they're either taking psychology or they're taking medicine or something. So they’ve got background knowledge of doctors and medical stuff. If I do have any health issues and stuff, the first point of contact I go to is Holland & Barrett.
Siobhan saw a few different GPs about mental health but would have preferred to see just one rather than having to repeat her story each time. It was hard having to talk again and again about self-harm.
Lack of knowledge of mental health
Auberon and Sophie felt that a lot of GPs knew little about mental health. Auberon was under the care of a psychiatrist and felt that his GP appointments were often rushed and he’d be advised to see his psychiatrist instead. At the age of 14, Nikki saw several GPs and found it hard to tell them in short appointments about how she’d been feeling. She’d been very depressed and was self-harming. A few doctors advised her to go for a walk or to exercise and she felt ‘pushed away’ and rejected. Later, when she told a school counsellor that she’d been hearing voices, she felt that she was taken seriously but only because doctors ‘care about particular buzzwords’. Sophie felt that GPs often wanted to rush through appointments about mental health as if they were the same as physical health problems. Other people recalled how hard it was talking about very personal things to a doctor they hardly knew. Sophie saw a GP six or seven times and felt ‘turned away’ when she couldn’t express her thoughts and feelings. Aged 14, she found it hard to open up but felt that the GP should have ‘picked up’ that, if she kept coming back, something must be wrong. She felt that her words had been ‘falling on deaf ears’, an experience that put her off seeing doctors.
I found it difficult because I felt like she knew nothing about mental health and she was kind of showing that quite clearly. And also, even though I was really upset, you know because I wasn’t, you know crying, it would have been nice if she'd attempted to comfort me maybe. Or said, you know, "If this isn't right for you, then we don’t have to talk about it." And that kind of thing.
But it was kind of a way of she wanted to just pile through it and just do it like any other appointment which, I don’t know, it wasn’t…it wasn’t all that kind of her to do I don’t think. So I’d say it would…people would just really, really appreciate it if you were much more kind of slow and understand like and.... You know if someone is upset, just like with any other illness you'd, you know be a bit, kind to them. You wouldn’t want to upset them even further so....
And you mentioned that it was obvious she didn’t really know much about mental health.
Yeah.
What kind of things gave you that impression that…?
Well she…the first kind of thing she did was she did this…it was like a kind of questionnaire thing on her computer, which was obviously some kind of…like she hadn’t even really spoken to me about it. And it was obviously some kind of generic mental health questionnaire. And it just kind of asked the oddest questions about things like, 'Do you sleep with a teddy bear at night; do you…' like really bizarre kind of questions. And it seemed like it was really aimed at a child or, you know, someone much younger. So yeah it was that. And then when I kind of said I don’t think this is right for me, she was just like, "Well I don’t know what else to do with you." You know, I don’t know – you can only take so much from that really so....
Like Sophie, Nikki also felt that it’s hard for young people to talk about mental health in short consultations. When the same person keeps going to the doctors’ about the same thing, though, the GP could ‘always assume there’s more behind the appointment’.
Can you remember how many times you went to see the GP at all?
Oh I've lost count; I don’t know, just loads.
So what could have…what could they do, GPs, to improve the situation there?
They need to realise that people aren’t going to tell you everything in ten minutes. They're trying their best, like it takes a lot of courage to go to a GP and say, "Like this is sort of what I'm experiencing." So I would always say like don’t take like…what they're saying…always assume there's more to it and always provide them with something even if, you know, they're not going to get help through the NHS, then…like helplines, charities, something like…like just never just let someone walk away because that could be…it could be so bad like you just never see them again. Like you cannot ignore anyone.
So a young person comes to see the GP, they might not tell everything that they're thinking or feeling. So you would advise that there may be more behind the appointment?
There always is, yes.
There's always more behind the appointment. How can…what could a good GP do in these situations? Say their ten minutes is coming up and they’ve heard a little bit – is there anything else that they could do? So they could give telephone numbers of helplines; could they follow-up again, maybe phone the person or –
Yeah, I had a really good experience of a GP like a few months ago which was like my first ever good experience of a GP really. She was really, really nice. She spoke to me on my level, on my terms, and what she did was she said which day she worked at the practice. She said that I could go back whatever time if I just want to chat. I think maybe just remind the person that they can come back, like they're not a waste of time, yeah.
Seeing the same GP every time, someone a patient felt comfortable with, was also important. Shane felt like he’d been ‘passed around three different people’ but would have preferred to talk to the first doctor he saw, who he felt comfortable with. People’s main concerns were that:
• mental health consultations were often dealt with in short appointments and felt rushed
• it’s hard for young people to talk about mental health
• it’s also hard for them to open up to a GP they hardly know
• seeing the same GP is helpful
• other kinds of consultations (e.g. by phone or online) can be useful for young people when it’s hard to open up
Doc Ready is designed to help young people prepare for their first appointment with a GP to talk about their mental health.
[insert link to it in the Information and Resources section]
Not being listened to or taken seriously
Although Isaac’s most recent consultation was good– the GP listened, explained, and referred him to hospital quickly when he had a mole on his arm – his experiences at a younger age when he’d gone with an adult had been less positive. He recalled having a consultation about hay fever when he was eight, which he went to with his grandmother.
I remember one [GP] diagnosed me with hay fever which is a large inconvenience – hay fever's horrible. But I remember that one, they completely basically ignored me and listened to my grandmother.
And the other one, which was a lot more recent actually, it was more of when I was fifteen, which is only a few years ago, that I had a …I was in because of my eczema. And even at fifteen I was basically being ignored in favour of them listening to my parents – at the time my mother came with me. So they listened to her on the latter and I was just there, so yeah, even at fifteen they basically blanked me out, so yes.
So if we go back to that appointment when you went with your grandma.
Yes.
That was about hay fever. Did they ask you anything at all like, you know, are you sneezing a lot, are your, you know, eyes itchy?
They asked me a few questions but I answered to the best of my abilities at eight. And they basically just looked at my Gran and she repeated basically what I'd said. But they listened to her and wanted her to speak as well. Even though she repeated what I said, they still wanted her to be the one saying it, which was yeah.
When you left that appointment, what did you think? Do you remember what you thought at that time when that appointment finished?
I can remember thinking I hope this goes away but also that I was slightly annoyed that they had not paid any attention on mine to what I'd been saying.
Later, at an appointment about eczema, Isaac felt that the GP spoke and listened to his mum ‘in favour of’ him. He was given a prescription and felt that nothing had been explained to him. He also felt that, at 15, he was ‘still being ignored....my voice meant very little to a doctor in an appointment that was for me’.
You went later because of eczema?
Yes, yes, at fifteen and they yep, big skin rash, really red, had to go into hospital for it once. They still just sort of listened to my mother and then gave me some prescriptions that they didn’t even bother telling me what was on it. They didn’t read the name of it. They didn’t…they just said, "Give this to the chemist and follow the instructions." No help really; they just sort of said, "Here's a prescription, go and get it." So yeah...
Did they say it's eczema?
They told me it was eczema, yeah, they did say that. At the time I didn’t really know what eczema was. I just knew I was itchy. But they didn’t really explain anything. They just sort of presumed I…they either assumed I knew what it was or just assumed my mother would explain it to me and I just sort of was told to…I could go, so yeah.
And leaving that appointment can you remember what you thought then and...
That one was a bit more annoyed in general at the whole thing that I was basically still being ignored at fifteen; that my voice meant very little to a doctor in an appointment that was for me, so yes.
How would that appointment have been better? What should have really happened do you think in your opinion?
The doctor should have asked his questions more direct – or she – at me rather than my parent who was with me at the time. Being spoken to directly other than through my parent would have been better; being taken more seriously – that in general really, just being taken more seriously in my own appointment would have been made it better, yes.
Jalé saw different GPs several times before she was diagnosed with hypothyroidism. For a few months her symptoms were dismissed as stress related and she felt that the doctors didn’t take them seriously. Jalé discussed the same symptoms in four different appointments – stomach pains, being unable to sleep, and feeling depressed – and was given a pregnancy test each time. She wondered if the doctors would have asked her to take four pregnancy tests had she been older.
Do you feel that you're always taken seriously or listened to because you mentioned that, at the beginning, you went quite a few times before?
Yeah, no I don’t think I always have. I mean the first, when I was a lot younger, it was, "You're stressed or it's growing pains." And as I've got older just before, in fact just before I was seen for the ultrasound, and I was telling them I was having abdominal pains, I was asked to take four pregnancy tests. Every time I went there, I was told to take a pregnancy test before they would continue talking to me. And it was like…
Was this by the GP?
Yeah, and it was like it's on your screen that I'd clearly had a pregnancy test twice, and it's come back negative twice. Unless you don’t appreciate your own work, then clearly that’s not the case. And clearly you need to be talking about something else. And literally they just would not talk to me and would not absorb what I say. As soon as I said abdominal pains he said, "Well I think we should check."
And the first time, I think if anyone, woman, said that, I completely understand. The second time, fair enough sometimes they get it wrong, fair. But after that I was just sat there like this is actually ridiculous now. Like it's reached the point where you can see it on the…it's not like you don’t even know that it's happened. You can see it on the screen that it's, you know, it is what it is and actually I'd like to be spoken to like an adult going through what I'm going through.
And...but I then I kind of felt like I had to kind of do it because, you know, that’s the doctor and the doctor's not going to continue this conversation until I've done what I've been asked to do. And I just felt that that was completely just unfair. And I felt, if actually I'd have been older, I don’t think I would have been asked to take four pregnancy tests just…
So it's the four times that you went in?
Yeah, so the four times I went in. Before I was spoken to, they would check my records, ask when I was last seen, and then ask me to take a pregnancy test.
There? They would give you a…?
Yeah, so well they'd give it to me and then yeah I'd go. Well I'd still be there but I'd go and take a pregnancy test, come back in, then they do their dip and la, la. And they go, "Oh OK well you're not" and then carry on. And I was just like, "Well I know I'm not; I could have told you that myself," you know there's a…
They kept going back [talked together]…
Yeah, I just kept going and going. And that was all they could come up with. And I mean I was going back again and again at the beginning, and it was just stress. And then when I'd been going back again and again since, it's just, "You must be pregnant." And it's like, "No there are other problems."
Yeah, how did that make you feel?
It's…I find it more patronising more than anything else because it's just like, is that the only solution you can have for a young lady whose got anything wrong with her stomach. And surprisingly enough actually, most of the pain has moved from my stomach now, so it's the last thing I'll mention, so that’s not the first thing that comes out.
But it is just the most patronising thing to come out with because, to be fair there's other questions you could ask me that would have secured you the fact that I'm not pregnant. And it's just like that’s the first thing you come up with before I've even finished talking, it's, "Oh yeah, you must take a urine sample, you must be pregnant."
And you reach the point where I might as well turn up with my own pregnancy test and just go, "I'm not, so can I carry on talking now?" And it is, it just feels like a complete disregard to everything else you’ve said, like you're not absorbing the fact that, yes I've said to you I've got abdominal pains, but I'm also telling you that I can't sleep. And I'm also telling you that I feel quite depressed. And you're not taking any of those on. You're just taking the one that will quickly get you out of the office." Because if I turn out to be pregnant then it's, "Oh you're just a silly girl who didn’t know she'd end up pregnant." And that’s not the case for everyone. You know, you can't take it all the same.
• lack of information, explanation, and involvement in deciding what to do
• wrong diagnosis or long time to get referred to a specialist
• rushed appointments
• poor relationship with the GP
• seeing different GPs almost every appointment
• lack of knowledge of mental health
• not being listened to or taken seriously
Lack of information, explanation, and involvement in deciding what to do
When Emma was diagnosed with type 1 diabetes, the GP sent her to hospital straight away. Although she was diagnosed quickly, Emma felt shocked – she didn’t know what type 1 diabetes was or how it could affect the rest of her life. She would have liked more information from the doctor who diagnosed her but ended up asking her dad many of the questions she had because he was also a GP. Emma felt that her own doctor should have made sure she was okay after giving her news of ‘a life changing event’. She had no idea she’d be on insulin for the rest of her life. Jalé, who was also living with a long-term condition (hypothyroidism), would have liked more information when she was first diagnosed too. Hypothyroidism is when the thyroid produces less thyroid hormone than it should, which causes the metabolism to run too slow. She sometimes felt that she was only taken seriously if she used medical terminology, and took a book with her when she went to see the doctor. She did a lot of reading before the appointment and had highlighted all the symptoms in the book that she’d been having. Sarah felt disappointed when she saw a GP about her mental health. She felt that the doctor gave her very little information about the various antidepressants that Sarah could consider taking in the future and didn’t discuss the other options available (see below).
Jalé felt nervous about seeing the GP. She thought he would ignore her but he referred her to hospital.
Jalé felt nervous about seeing the GP. She thought he would ignore her but he referred her to hospital.
Sex: Female
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And I thought if I take this to a doctor, they can't ignore it. It's, you know, it's right there. And as I was reading and I was asking other people [on an online support group] , find out what they'd been going through and stuff like that, I found that a lot of them were actually being ignored and I was thinking, 'Well, you know, how's that possible?'
And so when I went back to the GP just recently, I did feel very nervous in thinking, you know, he's just going to ignore what I'm saying. I'm not going to get seen by a specialist. He's just going to say, you know, "You're fine." And he took his blood test and he said, "You know, your T4's fine, but you are a bit low on your TSH, do you want me to up your dosage?"
So I said, "I don’t want anyone to up my dosage anymore because the more they up it, the worse I feel. And I would just really prefer to have a referral." And he said, "OK that’s fine, I'll give you a ‘book and choose’, a book." And so that’s what I did, and then I was told wait until I could be seen in July.
Susan wished that the GPs she’d seen had given her more information about preventing fungal toe infections. She kept getting them and saw different doctors four or five times until she ‘just kind of gave up with it and put up with it for a long time’. She felt frustrated that the creams she used didn’t work and would have liked to have been told at the first appointment that, for severe, ongoing infections, tablets would have been more effective and that fungal infections can take some time to go completely.
Susan’s infection was severe. She wished she’d been told that tablets would be more effective than creams. She’s had fungal infections for over 6 years.
Susan’s infection was severe. She wished she’d been told that tablets would be more effective than creams. She’s had fungal infections for over 6 years.
Sex: Female
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The other thing is maybe just expectations because I think I was expecting it would get better all the time I was using the creams. When actually I think probably by the second or third cream it was quite clear that the cream wasn’t going to clear it. But no-one actually said, you know, ‘You’ve just…you’ve either got to live with this or just take the risk of the medication.’ It was more just, "Oh don’t worry we'll give you the cream and it will go," yeah.
Can you remember the time, the number of years or months or years-
Yeah years, definitely years, yeah, yeah.
So at one point you felt like giving up, so you were trying things that you'd read about on the internet, that wasn’t working either. So did you decide at any point to just give up completely or to go back or to see someone else, what happened?
Yeah, for a couple of years I stopped completely and it just kind of rumbled along at a low level, so I was fine. And then I had to have high dose steroids for another medical condition and it became very out of control, and that was quite recently. So now I'm actually considering going onto the oral medication [laughs] after all of that.
Oh so it's been going on for quite a long time -
It's still going on.
So it's been going on for a good five/six years or so?
Longer probably, yeah absolutely.
When Aaron hurt his wrist playing football, his usual GP was away so he saw another. This doctor told Aaron that he’d sprained his wrist and would be fine. Aaron saw the GP three times because the wrist pain was getting worse but felt that nothing was being done. He then saw another doctor when he moved home to go to university. An x-ray showed that he had a fracture:
The doctor didn’t seem interested in what Aaron told him. He didn’t explain anything about the tests he did and prescribed painkillers.
The doctor didn’t seem interested in what Aaron told him. He didn’t explain anything about the tests he did and prescribed painkillers.
Sex: Male
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Yeah, but then I trusted him because I guess it’s a GP and, yeah. But then the second time I went I had a bit more doubt. And the last time I went I was really doubtful and thought I’d just wait until I go to university and sort it with the GP there.
And I went to a university which has the facilities, a sports uni, it’s [name of] University, so it has all the sports facilities. And they’re used to seeing people like that, so yeah I waited until I was there.
How would you compare that GP to your family doctor?
Not very good. Just not even like being personal to the patient, just not really giving an interest in the problem. And the fact that I’d gone back and said that the pain had got worse didn’t really make much difference I guess in his eyes. But, yeah, I knew that if it was my family [GP] that at least I could have got scans which is what I was after. I even said that to the person who was replacing her.
You suggested it to him?
Yeah, I suggested it but he didn’t seem very keen. I don’t know why that was, might not have been, he might have his own reasons, but yeah.
How could the appointments with him have gone better, what would you have liked in the ideal world to have happened in those appointments instead of thinking, ‘oh I’d better wait until I get to University’. If those appointments had gone better, you know, how, should they have gone really in the ideal world?
Well cos I, when I just went in, as I say, he did these tests, these pressure tests, so I didn’t know what any of them were for. So I guess learning what he’s doing and why and maybe seeing, because I know some GP practices have the posters of say your hands and they go through, ‘oh it might be this part and this bone is connected to this and that might be why’. But yeah, none of that, so he did a couple of tests, didn’t tell me why, gave me a prescription for some pain killers, and then gone, that’s it.
And did you ever at that point look for more information or talk to anybody else?
I did some research online. But yeah, as I said, I just waited then until I was at university because I knew where I was going, and I knew that they would probably have a bit more knowledge definitely than that GP.
It seemed like the doctors didn’t care because Winston’s problem wasn’t serious. He would have liked more information about what was wrong with his toe.
It seemed like the doctors didn’t care because Winston’s problem wasn’t serious. He would have liked more information about what was wrong with his toe.
Sex: Male
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Did you feel they gave you the information that you were looking for?
No, not really because they didn’t, I didn’t get a letter or anything saying anything about it. So I wasn’t really sure if, because I think they were just, they didn’t really care about it simply because it was not like an injury or something that was an issue. It was just something that was slightly abnormal but it wasn’t going to cause an issue, so they just thought it was, you know, minor.
Can you remember anything about the doctor that you saw? So that, when you first went about your toe, can you remember the doctor that you saw, the appointment?
Yeah.
Were you happy with the appointment because at that point the doctor said – was it a he or a she?
It was a he.
He said that he would refer you and send a letter. Were you happy with that appointment?
Well not really. He didn’t, because I did ask him if they could do something, and then he said that “We'll let you know.” But nothing happened so it was, you know, it was a bit hazy but....
Lack of time and feeling rushed in appointments was a common worry. Young people said it could take them a while to feel comfortable and find the words to say what was troubling them. Shane saw a GP about his mental health and went back the next day and saw another doctor. The second GP prescribed him antidepressants after reading the notes from the day before. Shane recalled that this appointment felt very rushed.
The GP talked to the computer screen and made no eye contact. Shane was ‘in and out in 5 minutes’.
The GP talked to the computer screen and made no eye contact. Shane was ‘in and out in 5 minutes’.
Sex: Male
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So that doctor that you saw, read the notes and saw, 'Ah this is the medication that’s been written on the notes.'
Hm mm.
Wrote a prescription for that?
Yeah.
So the doctor you saw the day before, you felt a bit more at ease with her. How about that doctor you saw the next day, can you tell me a bit about that doctor?
I was in the room for five minutes; was very, very rushed. They didn’t keep eye contact. They talked to the screen and not to me. And there was also a table in the way so it was very isolated and segregated between professional and patient.
Did that doctor introduce himself or herself?
No, they just said, "Hi," and, "Are you [participant’s name]?" and stuff like that and…
And did you mention that you'd been to see a doctor yesterday and had a chat about how you were feeling?
Yeah.
And then the doctor...did…was it a he or she?
He.
He. Did he ask you many questions or just said, "Ah, this is what's written and I'll prescribe you that."
Essentially just looked on the reports and prescribed me that. I guess it was just an off day for him, I don’t know. But yeah, I was in and out in five minutes and, yeah.
Poor relationship with the GP
It can be difficult to create a good relationship with the GP when people are regularly seeing different doctors or if they’ve had negative experiences in the past. Ish felt that it was hard to find a good GP and recalled going to the doctors’ four times with flu-like symptoms. The GP was reluctant to give him antibiotics but didn’t explain why. Ish felt that the symptoms he had should have been treated and that they’d caused him to have hearing loss in one ear. He felt that it was difficult to find a GP ‘that cares about you’ but that a good relationship with the doctor can help patients open up. He talks more openly to doctors he has a connection with.
People who have a good relationship with their GP are more likely to be honest about embarrassing problems. GPs should only progress if they give helpful advice.
People who have a good relationship with their GP are more likely to be honest about embarrassing problems. GPs should only progress if they give helpful advice.
Sex: Male
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But you know what I mean, if they’re embarrassed about it, like I don’t know, if someone’s embarrassed about the fact that they’re stomach’s constantly hurting or just, you know, doesn’t want to seem so called weak, they’re going to lie about it and they’re going to be like, “Yeah, the pain is just like, whatever. I can deal with it.”
But if you have a good relationship with your doctor you’re going to be like, “Yeah, it hurts so much I want to cry every single day.” You know, so to me that’s like, where a good relationship comes in, like you’re going to be honest if you have a good relationship with your doctor.
Mm. Yeah, absolutely.
I mean…..
Sorry, go on.
I mean, what I feel like just the whole system is like a little bit messed up, like most of the places that you’ve worked at, like throughout your life it’s all about what other people, you know, other people’s review about your career and how you do your job. [coughs] Sorry. I just feel like.
Do you want to stop?
Yeah, I have my tea.
If you want a break, just let us know.
Yeah, that’s the thing that how I feel like, I feel like the doctors are being kind of left out of that. I don’t think they should be able to, you know, advance on some level at their work unless they’re actually giving good service.
Ambeya felt that her experiences of GPs were good when she was younger but had changed over the years because she rarely saw the same doctor. She found it difficult to build a relationship with ‘a family doctor’ that saw everyone in her family, as she had done in the past, and this put her off seeing them. She also felt that GPs expected young people to take more responsibility for their own health when they turned 18.
The GPs know little about Ambeya’s medical history. She prefers looking up her symptoms online and talking to friends or going to a natural health shop.
The GPs know little about Ambeya’s medical history. She prefers looking up her symptoms online and talking to friends or going to a natural health shop.
Sex: Female
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So, even though doctors type up their notes and stuff on the computer and all on our database or whatever it is, they don’t really understand us. Or they don’t even know how we were before, so I find it really uncomfortable. So, this is from when I was young, so now it's got to the point – I'm twenty years old now – and it's got to the point where I avoid the doctor as much as possible.
So now it's got to the point that if I do feel ill or anything, I just have to Google my symptoms and see what that’s related to and I just look up what medication and stuff I need to take. And I'll either go to the GP or I'll just go to Holland & Barrett [natural health store] because they do all these medicine home therapy stuff.
So, yeah, it's got to the point I've been avoiding GPs as much as I can now. Especially when after you hit eighteen, they think that you're old enough to look after yourself so, because that’s the vibe that they give off, I'd rather just not go to them at all. I'd rather just Google it.
So you said that you'd rather avoid going to the GPs?
Yeah.
And Googling. And is there anywhere that you go if you're feeling unwell – would you see a pharmacist, would you talk to your friends?
Well I do speak to my friends because most of my friends, they're either taking psychology or they're taking medicine or something. So they’ve got background knowledge of doctors and medical stuff. If I do have any health issues and stuff, the first point of contact I go to is Holland & Barrett.
Lack of knowledge of mental health
Auberon and Sophie felt that a lot of GPs knew little about mental health. Auberon was under the care of a psychiatrist and felt that his GP appointments were often rushed and he’d be advised to see his psychiatrist instead. At the age of 14, Nikki saw several GPs and found it hard to tell them in short appointments about how she’d been feeling. She’d been very depressed and was self-harming. A few doctors advised her to go for a walk or to exercise and she felt ‘pushed away’ and rejected. Later, when she told a school counsellor that she’d been hearing voices, she felt that she was taken seriously but only because doctors ‘care about particular buzzwords’. Sophie felt that GPs often wanted to rush through appointments about mental health as if they were the same as physical health problems. Other people recalled how hard it was talking about very personal things to a doctor they hardly knew. Sophie saw a GP six or seven times and felt ‘turned away’ when she couldn’t express her thoughts and feelings. Aged 14, she found it hard to open up but felt that the GP should have ‘picked up’ that, if she kept coming back, something must be wrong. She felt that her words had been ‘falling on deaf ears’, an experience that put her off seeing doctors.
Sophie felt that the GP ‘knew nothing about mental health and she was kind of showing that quite clearly’. The questionnaire seemed to be aimed at children.
Sophie felt that the GP ‘knew nothing about mental health and she was kind of showing that quite clearly’. The questionnaire seemed to be aimed at children.
Sex: Female
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But it was kind of a way of she wanted to just pile through it and just do it like any other appointment which, I don’t know, it wasn’t…it wasn’t all that kind of her to do I don’t think. So I’d say it would…people would just really, really appreciate it if you were much more kind of slow and understand like and.... You know if someone is upset, just like with any other illness you'd, you know be a bit, kind to them. You wouldn’t want to upset them even further so....
And you mentioned that it was obvious she didn’t really know much about mental health.
Yeah.
What kind of things gave you that impression that…?
Well she…the first kind of thing she did was she did this…it was like a kind of questionnaire thing on her computer, which was obviously some kind of…like she hadn’t even really spoken to me about it. And it was obviously some kind of generic mental health questionnaire. And it just kind of asked the oddest questions about things like, 'Do you sleep with a teddy bear at night; do you…' like really bizarre kind of questions. And it seemed like it was really aimed at a child or, you know, someone much younger. So yeah it was that. And then when I kind of said I don’t think this is right for me, she was just like, "Well I don’t know what else to do with you." You know, I don’t know – you can only take so much from that really so....
It’s hard to talk about feelings in a short appointment. There’s usually more behind the visit. GPs should give information about helplines and charities.
It’s hard to talk about feelings in a short appointment. There’s usually more behind the visit. GPs should give information about helplines and charities.
Sex: Female
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Oh I've lost count; I don’t know, just loads.
So what could have…what could they do, GPs, to improve the situation there?
They need to realise that people aren’t going to tell you everything in ten minutes. They're trying their best, like it takes a lot of courage to go to a GP and say, "Like this is sort of what I'm experiencing." So I would always say like don’t take like…what they're saying…always assume there's more to it and always provide them with something even if, you know, they're not going to get help through the NHS, then…like helplines, charities, something like…like just never just let someone walk away because that could be…it could be so bad like you just never see them again. Like you cannot ignore anyone.
So a young person comes to see the GP, they might not tell everything that they're thinking or feeling. So you would advise that there may be more behind the appointment?
There always is, yes.
There's always more behind the appointment. How can…what could a good GP do in these situations? Say their ten minutes is coming up and they’ve heard a little bit – is there anything else that they could do? So they could give telephone numbers of helplines; could they follow-up again, maybe phone the person or –
Yeah, I had a really good experience of a GP like a few months ago which was like my first ever good experience of a GP really. She was really, really nice. She spoke to me on my level, on my terms, and what she did was she said which day she worked at the practice. She said that I could go back whatever time if I just want to chat. I think maybe just remind the person that they can come back, like they're not a waste of time, yeah.
• mental health consultations were often dealt with in short appointments and felt rushed
• it’s hard for young people to talk about mental health
• it’s also hard for them to open up to a GP they hardly know
• seeing the same GP is helpful
• other kinds of consultations (e.g. by phone or online) can be useful for young people when it’s hard to open up
Doc Ready is designed to help young people prepare for their first appointment with a GP to talk about their mental health.
[insert link to it in the Information and Resources section]
Not being listened to or taken seriously
Although Isaac’s most recent consultation was good– the GP listened, explained, and referred him to hospital quickly when he had a mole on his arm – his experiences at a younger age when he’d gone with an adult had been less positive. He recalled having a consultation about hay fever when he was eight, which he went to with his grandmother.
Isaac felt that the GP ignored him and listened to his grandmother instead. She just repeated what he’d told the doctor.
Isaac felt that the GP ignored him and listened to his grandmother instead. She just repeated what he’d told the doctor.
Sex: Male
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And the other one, which was a lot more recent actually, it was more of when I was fifteen, which is only a few years ago, that I had a …I was in because of my eczema. And even at fifteen I was basically being ignored in favour of them listening to my parents – at the time my mother came with me. So they listened to her on the latter and I was just there, so yeah, even at fifteen they basically blanked me out, so yes.
So if we go back to that appointment when you went with your grandma.
Yes.
That was about hay fever. Did they ask you anything at all like, you know, are you sneezing a lot, are your, you know, eyes itchy?
They asked me a few questions but I answered to the best of my abilities at eight. And they basically just looked at my Gran and she repeated basically what I'd said. But they listened to her and wanted her to speak as well. Even though she repeated what I said, they still wanted her to be the one saying it, which was yeah.
When you left that appointment, what did you think? Do you remember what you thought at that time when that appointment finished?
I can remember thinking I hope this goes away but also that I was slightly annoyed that they had not paid any attention on mine to what I'd been saying.
Isaac felt annoyed and that the GP should have spoken directly to him, not to his mum.
Isaac felt annoyed and that the GP should have spoken directly to him, not to his mum.
Sex: Male
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Yes, yes, at fifteen and they yep, big skin rash, really red, had to go into hospital for it once. They still just sort of listened to my mother and then gave me some prescriptions that they didn’t even bother telling me what was on it. They didn’t read the name of it. They didn’t…they just said, "Give this to the chemist and follow the instructions." No help really; they just sort of said, "Here's a prescription, go and get it." So yeah...
Did they say it's eczema?
They told me it was eczema, yeah, they did say that. At the time I didn’t really know what eczema was. I just knew I was itchy. But they didn’t really explain anything. They just sort of presumed I…they either assumed I knew what it was or just assumed my mother would explain it to me and I just sort of was told to…I could go, so yeah.
And leaving that appointment can you remember what you thought then and...
That one was a bit more annoyed in general at the whole thing that I was basically still being ignored at fifteen; that my voice meant very little to a doctor in an appointment that was for me, so yes.
How would that appointment have been better? What should have really happened do you think in your opinion?
The doctor should have asked his questions more direct – or she – at me rather than my parent who was with me at the time. Being spoken to directly other than through my parent would have been better; being taken more seriously – that in general really, just being taken more seriously in my own appointment would have been made it better, yes.
Jalé felt that the doctors were ‘patronising’. They seemed to ignore the other symptoms she was describing, apart from stomach pains.
Jalé felt that the doctors were ‘patronising’. They seemed to ignore the other symptoms she was describing, apart from stomach pains.
Sex: Female
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Yeah, no I don’t think I always have. I mean the first, when I was a lot younger, it was, "You're stressed or it's growing pains." And as I've got older just before, in fact just before I was seen for the ultrasound, and I was telling them I was having abdominal pains, I was asked to take four pregnancy tests. Every time I went there, I was told to take a pregnancy test before they would continue talking to me. And it was like…
Was this by the GP?
Yeah, and it was like it's on your screen that I'd clearly had a pregnancy test twice, and it's come back negative twice. Unless you don’t appreciate your own work, then clearly that’s not the case. And clearly you need to be talking about something else. And literally they just would not talk to me and would not absorb what I say. As soon as I said abdominal pains he said, "Well I think we should check."
And the first time, I think if anyone, woman, said that, I completely understand. The second time, fair enough sometimes they get it wrong, fair. But after that I was just sat there like this is actually ridiculous now. Like it's reached the point where you can see it on the…it's not like you don’t even know that it's happened. You can see it on the screen that it's, you know, it is what it is and actually I'd like to be spoken to like an adult going through what I'm going through.
And...but I then I kind of felt like I had to kind of do it because, you know, that’s the doctor and the doctor's not going to continue this conversation until I've done what I've been asked to do. And I just felt that that was completely just unfair. And I felt, if actually I'd have been older, I don’t think I would have been asked to take four pregnancy tests just…
So it's the four times that you went in?
Yeah, so the four times I went in. Before I was spoken to, they would check my records, ask when I was last seen, and then ask me to take a pregnancy test.
There? They would give you a…?
Yeah, so well they'd give it to me and then yeah I'd go. Well I'd still be there but I'd go and take a pregnancy test, come back in, then they do their dip and la, la. And they go, "Oh OK well you're not" and then carry on. And I was just like, "Well I know I'm not; I could have told you that myself," you know there's a…
They kept going back [talked together]…
Yeah, I just kept going and going. And that was all they could come up with. And I mean I was going back again and again at the beginning, and it was just stress. And then when I'd been going back again and again since, it's just, "You must be pregnant." And it's like, "No there are other problems."
Yeah, how did that make you feel?
It's…I find it more patronising more than anything else because it's just like, is that the only solution you can have for a young lady whose got anything wrong with her stomach. And surprisingly enough actually, most of the pain has moved from my stomach now, so it's the last thing I'll mention, so that’s not the first thing that comes out.
But it is just the most patronising thing to come out with because, to be fair there's other questions you could ask me that would have secured you the fact that I'm not pregnant. And it's just like that’s the first thing you come up with before I've even finished talking, it's, "Oh yeah, you must take a urine sample, you must be pregnant."
And you reach the point where I might as well turn up with my own pregnancy test and just go, "I'm not, so can I carry on talking now?" And it is, it just feels like a complete disregard to everything else you’ve said, like you're not absorbing the fact that, yes I've said to you I've got abdominal pains, but I'm also telling you that I can't sleep. And I'm also telling you that I feel quite depressed. And you're not taking any of those on. You're just taking the one that will quickly get you out of the office." Because if I turn out to be pregnant then it's, "Oh you're just a silly girl who didn’t know she'd end up pregnant." And that’s not the case for everyone. You know, you can't take it all the same.
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