Repeat visits to medical professionals
Most people saw their doctors about acne more than once. This might be because they needed a repeat prescription, treatments hadn’t worked or had caused unpleasant side effects, or acne came back after clearing up for a while. Molly stressed it’s important to know that treatments can take a while to work and her doctors explained that the medicines weren’t “overnight cures”. People didn’t always see the same doctor – including because they had moved address (such as going to university) or out of choice (if they felt the doctor hadn’t been helpful).
Molly had an upsetting first appointment with a GP but later found a doctor she felt was more understanding.
Molly had an upsetting first appointment with a GP but later found a doctor she felt was more understanding.
Age at interview: 20
Sex: Female
Age at diagnosis: 11
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My first appointment was really horrible in that like I was really in like, it sounds wei-, it sounds weird for it to be an embarrassing illness when like it’s literally on my face and like anybody can see it, like. I feel like sometimes that doesn’t make sense is to be embarrassed about it. But I j-, the first time I went I was really embarrassed and I kind of been trying to goad my mum into taking me for a while because she was really like against…I mean in her, from her perspective it was just a natural kind of puberty thing and I should just kind of, just let it go. But I think once she realised that like it was upsetting me and it wasn’t really going away as like a lot of, I think experiences people during puberty do, she took me. So I went to the doctor and he was like ‘What are you here for?’ and I was like ‘I've come about my skin,’ and his first comment was like ‘Well if you have-hadn’t mentioned it then I would have,’ which made me feel hor-, like really horrible and I was just like ‘okay’.
But I didn’t go and see that doctor again, I did find a doctor in the surgery who kind of had a bit more of a understanding of it and was a bit more sympathetic because I think some doctors, and the impression I’ve got at times is that they kind of think that with this kind of thing you’re wasting their time because it’s just a natural part of growing up. And like to a certain extent I do agree that like having spots or whatever is kind of a normal part of growing up but there has to be a, a point at which you’re like that's beyond the kind of the normal experience and like I think it’s sad if you feel like you’re wasting somebody’s time when actually like it does affect a lot of teenagers when it goes past that point. But yeah I found a doctor that was quite a bit better and was like really willing to like talk about it a bit more extensively so it was kind of trial and error really.
Lots of people tried several different prescribed acne treatments. Tom remembers his GP giving him a choice between a topical gel and antibiotic tablets. Rachael tried three different types of antibiotics but began to feel “hopeless” when these didn’t work and made her feel sick as a side effect. Some people said they would have liked something (e.g. a leaflet) about other young people’s experiences on various acne medications. Rachael didn’t know anyone else who had taken isotretinoin (e.g. Roaccutane) and said she would’ve liked statistics on the chances of having side effects too.
Many people felt fed up about trying each medication for a block of time, usually a few months. Chris’ treatments went up in strength (“I felt like they were giving me better things each time”) but only kept his acne “at bay” rather than clearing it. It can also be expensive trying different acne treatments if the person pays for prescriptions or opted for private medical care, and with travel to medical appointments (see also ‘finances’). Some people thought it was good though that their doctors gave them weaker treatments first rather than skipping to stronger medicines with worse side effects. Sometimes the early treatments worked well and there was no need for others.
Chris felt differently about his acne treatments as time went on.
Chris felt differently about his acne treatments as time went on.
Age at interview: 20
Sex: Male
Age at diagnosis: 17
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So what do you remember about that first appointment that you had with the GP?
I was kind of hopeful, like I was hopeful whatever they’d, they’d give me would sort it out, but it’s such a difficult thing to sort because there’s so many different treatments you have to do before they like consider putting you on like Roaccutane (isotretinoin) or anything. So I was hopeful, and, you know, like just, it’s just a matter of patience really and when, when one thing doesn’t work for you just have to keep going back really.
So, I mean, the feeling when I first went in wasn’t too bad. I just sort of, you know, it’s just something I have to get over. And just deal with.
But you sort of became quite frustrated towards the end of that?
Yeah. Oh definitely, yeah, like when, when you go on one treatment and you go sort of you think you’re getting better and then you don’t and it just takes up months and months and, nothing’s working for you. It’s very frustrating. And, you know, it’s not like you’re just doing that, you’re trying other things, you’re using new face scrubs. It is something where you do everything you can. And, yeah, I suppose frustration is like probably one of the most sort of common emotions that I experienced. Whilst having it, I guess.
Naomi saw GPs about her acne for many years.
Naomi saw GPs about her acne for many years.
Age at interview: 22
Sex: Female
Age at diagnosis: 9
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The GP’s were generally like really nice about it but I think like through my teenage years in particular they, they perhaps weren’t, weren’t as like quick to, to do something about it because, you know, everyone has that attitude like ‘oh it’s just a teenage thing, it’s a phase’ and like, not that they didn’t take it seriously but I think they would, they just kept being like, “Oh, you know, just wait and see, just like wait a few more months,” and like every time I waited it just, it was longer that I was having to, you know, feel so awful about myself and so I think that was quite frustrating. and so then often it like, you know, it would, it wouldn’t be until I went and was like really upset and emotional that they’d actually do something about it and you know, say like, “Oh, well, this obviously isn't working. Let’s move onto something else.” And like, I think that was like frustrating because I just kind of felt like they weren’t they didn’t really understand.
Naomi didn’t feel confident enough to ask her GP to try something else, even though the treatments didn’t seem to be working.
Naomi didn’t feel confident enough to ask her GP to try something else, even though the treatments didn’t seem to be working.
Age at interview: 22
Sex: Female
Age at diagnosis: 9
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Usually the decision was ‘do I carry on with what I'm doing now or do I kind of go up to the next level?’ And I think usually I would be the one pushing to try something stronger because nothing was working and I was frustrated but I think often I think my, my lack of confidence in going to all these appointments kind of meant that when I, particularly with the GP ‘cos I’d be going because I’d run out of whatever I was taking and so then they’d say, “Okay well shall I just prescribe some more?” And I’d kind of be wanting to try something else because it wasn’t working but like didn’t have the confidence to say, “No, I don't want more of this. I want something that’s gonna work” and so I’d just say, “Yeah, okay, I’ll have more.” and I think, yeah that was part of the problem because I guess I did have a choice and I could have said, “No, this isn’t working for me. Can you give me something else?” but yeah. Also I just wanted to, I always wanted to leave so I’d just be like, “Yep, fine, I’ll take a prescription and go.” yeah but that meant that there were times when I was just on the same thing for so long and it wasn’t working and I’d go and get more and it still wasn’t working so that’s quite frustrating.
Referrals (e.g. to dermatologists or for mental health support)
Going back to the doctor over and over again without any improvement can be frustrating. If the medicines prescribed by GPs (like topical treatments and antibiotics ) didn’t work, some people were referred to dermatologists (who can prescribe isotretinoin). Not everyone we talked to had seen a dermatologist – sometimes they were happy with seeing GPs or using shop-bought products. Other times, people had asked for a dermatology appointment sooner but their GPs were reluctant to make the referral. This felt unfair and like the doctor didn’t understand the emotional impacts acne can have. Some people opted to pay to see a dermatologist privately in the hope of their acne clearing quicker.
At first, Harriet didn’t realise seeing a dermatologist about acne was an option.
At first, Harriet didn’t realise seeing a dermatologist about acne was an option.
Age at interview: 21
Sex: Female
Age at diagnosis: 12
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So when they kind of stopped working, I’d, or ran out and I didn’t feel like they’d been working, I probably should have then gone back to the, back to the GP and said, “This doesn’t work.” But you, you sort of like start to lose faith a bit when you’ve been at it for a couple of years and nothing seems to work. So I sort of stopped going back, tried to do my own thing, then eventually went back and, yeah, they said, “Go to the dermatologist.”
I didn’t even realise it was something that would have been an option. So sort of I kept going back to see if there was anything else they could do. But I never realised that sort of the end goal would be to get to see a dermatologist. But, but, yeah. So I, I didn’t realise quite how severe it was I think until I got to see the dermatologist.
Okay.
Because, yeah, as soon as he saw me he was like, “Okay, we’re gonna put you on the hard stuff” [laughs].
Naomi saw a dermatologist privately when her acne returned, having previously had a long treatment process through the NHS route.
Naomi saw a dermatologist privately when her acne returned, having previously had a long treatment process through the NHS route.
Age at interview: 22
Sex: Female
Age at diagnosis: 9
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I mean the first time I went I didn’t really know what to expect and like I knew that it was just going to be a kind of stronger version of medication and that was why I was in a hospital rather than the GP, but like I didn’t really understand what was going on. and yeah but then the second time obviously, I’d, it had come back and the GP had made me try some other stuff that I’d had before but it had never worked and of course it didn’t work. and so I was kind of frustrated and just really upset that something that I thought was over had just kind of come back. and the fact that I was like going back to this hospital and like I didn’t want to have to go through that again but I knew I was going to. and then yeah the third time was possibly even the worst because I felt like it was my fault and, and because I was having to go privately so I felt guilty about the fact that I was like spending all this money on something that most people would just say was like a vanity thing and like, you know, “Why, why don’t you just wait and go to the NHS doctor?” And like even though no-one ever said that to me – it felt, it felt so bad because it felt so like selfish. But and I remember I went in and, you know, you have to like sign a form to say that it’s like to say that you’ll pay for the appointment and I just remember they kept saying like , “So you're a private patient?” and I was like, “Yeah, I’ve come here privately,” and then they were like , “So do you have insurance?” and I was like, “No, I don’t have insurance, I’m paying for this privately.” and then they were, they were like, “You know you have to pay for this?” and I was like, “Yes. Just let me get-,” and I was just like crying and like, “Please, just let me-, I just really, really want to see the dermatologist.” and yeah so that just felt really awful and like obviously every time I went to see every time I started the Roaccutane (isotretinoin) like the second and third time, it felt like, it felt good in that I was finally doing something that I knew would work because it had always worked for me but it was also really emotional because it felt like a huge step back and like ‘oh I’m back where I was before’ and you know, back to square one, all this kind of stuff. That’s like just really emotional [laughs].
Molly would like to see a dermatologist but finds her GPs reluctant.
Molly would like to see a dermatologist but finds her GPs reluctant.
Age at interview: 20
Sex: Female
Age at diagnosis: 11
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I think I’ve raised it like twice and both times it’s kind of dismissed that that wouldn’t be something that we would do, cos obviously I’d need like a referral from them. Which at the time I felt was quite like unjustified because like I had been on treatment for a few years and like it wasn’t like, if I’d gone to them like initially and been like ‘I want to see a dermatologist’, like I’m probably, I'm pretty sure that they would want to maybe like have a go at their own treatment. So like yeah, I’ve never actually, maybe if I’d pushed it like I was always like ‘okay well, we’ll do it your way then’ but like I’m definitely at a point now where I’m more willing to be like ‘I want to see a dermatologist’. And I've always like, apart from that I’ve always felt quite in control of the treatment. So now that I’m kind of resolute, maybe I was like kind of half-hearted and like, especially cos I always linked the dermatologist to the stronger treatment, which I was unsure about. So I didn’t really force it. But definitely now that I do want to see a dermatologist I feel comfortable to be like, I don’t know how that will work out but I think I can kind of ask for it, I won’t feel bad about asking for a referral after like nine years of seeing GP’s locally.
There can be a wait before a dermatology referral ‘comes through’ – Chris said “don’t be shocked if you get like a three week or even a month sort of waiting list” and Naomi’s wait was over two months. Some people also found it hard to get follow-up appointments at suitable times. Rachael had to miss school to make the dermatology appointments but says her teachers understood.
Most people went to a general dermatology clinic, but some had been to ones specially run for children and young people. Devan and Emma had been worried about seeing a dermatologist for the first time, but found them “really nice”. Will and Hester said their dermatologists answered questions in more depth than GPs had. Ish thinks it’s important doctors are friendly to young patients so they can “open up” about things which might be affecting their acne. Some dermatologists examined the person’s skin and, as for Emma, took photographs to compare changes at the next appointment.
Rachael describes at a typical dermatology appointment for her.
Rachael describes at a typical dermatology appointment for her.
Age at interview: 18
Sex: Female
Age at diagnosis: 16
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So, I'd go in to the hospital; go wait in the dermatology area, sign in. Then, like often the waiting times are quite long at the hospital so I found that quite annoying. Yeah and then I'd just go in and they're really friendly. They weren't often that long – just sort of spoke a bit. Like, I'd tell them whether I thought there was any improvement and then they'd tell me whether they thought there'd been any improvement as well. And, I often took my Dad to these and he'd like also like say, "Yes there's been an improvement," or, "No there's not," cos obviously he's been able to observe me for a longer time. It would just sort of like collect all our three views on the situation and then think of where to go from there.
How often did you get to see your dermatologist, was it regular appointments?
It was I think, sometimes cos it was through a hospital; it was quite hard to like get appointments. And I had to miss a few lessons occasionally as well cos they're always on a Thursday morning. But they, I think probably like a few months apart maybe. So, they weren't really regular but I think it's quite good to have them not too often as well.
And were you still able to see your GP in that time or?
No I was completely dealt with through dermatology and then if they needed to like contact my doctor they could, but I didn’t see the doctor anymore.
Sarah’s experience of seeing doctors and getting treatment has been inconsistent.
Sarah’s experience of seeing doctors and getting treatment has been inconsistent.
Age at interview: 22
Sex: Female
Age at diagnosis: 16
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Moving away from university and not, and having a break in your healthcare and having to register with a new GP and not having an ongoing relationship with the GP has undoubtedly made it harder and has I think been a reason why I have not sought as much medical advice as I might have. It’s taken me a while to work out how to navigate the NHS and it would be a lot easier if I’d been based in one place the whole time.
Could you say a bit more about that process of learning how to navigate NHS healthcare?
Yeah. I think when I was in contact with dermatologists I’d get very frustrated at the length of waiting time to get an appointment and appointments being rearranged and that kind of thing. And I never really followed up on it because acne didn’t feel like a particularly urgent problem. When I was dealing with ulcerative colitis which was an urgent problem, I had to develop a, I had to be more assertive, I had to say, “No, I need an appointment sooner than this”. But it’s difficult to say that with acne because it’s not, you know, it’s not really making you ill in the same way that a gastro-intestinal problem is for example.
Devan didn’t find his first dermatologist ‘young person friendly’.
Devan didn’t find his first dermatologist ‘young person friendly’.
Age at interview: 18
Sex: Male
Age at diagnosis: 13
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I’ve seen three different dermatologists. The first person I didn’t like them. He was quite, he wasn’t let’s say ‘young person friendly’, he was quite, he expected me to know everything about my medication that I’d had with my doctor, when you’d have thought he’d of had that information from the doctors already. And the one, the one that sort of put, spotted that, the dermatologist that spotted that my acne should have started to improve sort of spoke to me about that, she was sort of with me for a few of the appointments but now she’s left and I’m now being treated by another, the sort of, I think she’s one of the higher up dermatologists that’s there anyway.
And again, the doctors, it’s just a case of spotting somebody who’s available, really.
With the first dermatologist that you didn’t really like, his sort of, his tact and everything how did you go about getting a different person?
I just sort of rang them up and told them that I didn’t like him. And I wanted to sort of move to the other hospital but apparently if I’d have done that I’d have had to wait even longer to get the medication because I’d have been put back to the bottom of the waiting list. So they just sort of said grin and bear it. But thankfully, somehow he doesn’t see me anymore, it’s somebody else that speaks to me instead.
If treatments from the dermatologist had been successful in clearing up acne, the person was ‘discharged’ (meaning the appointments stopped). Emma remembers talking about being discharged from dermatology at her appointments and reassured she could come back if her acne returned.
Chris had a follow-up appointment with his dermatologist after finishing his course of isotretinoin tablets.
Chris had a follow-up appointment with his dermatologist after finishing his course of isotretinoin tablets.
Age at interview: 20
Sex: Male
Age at diagnosis: 17
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So after the full course, you have, I had a follow up appointment. It’s quite, they, they’ll ask you how you think it’s gone and things like that. They’ll, they’ll give you the option if you want to continue on it. So, I was on it for five months and they’re like, “Do you want it for another month”? And I was like “Yes, if like, if you’re sort of letting me have another month. I’ll go on another month”. And they’re like, “Yeah, that’s totally fine”. So they gave me another month and that was sort of. I was happy with that so.
It is like it, they are quite they’ll take your sort of perspective into it. Obviously, to a certain extent they’ll consider how long you’ve been on it for and whether it’s worth doing another month, but if you, if they feel like, you know, you might benefit from another month or even if it just sort of, sort of benefits your sort of, I don’t know how you feel about - like you might think in your head, ”Oh another month is what I need”, it might not do anything, but if, if you feel that way then they’re probably more likely to, to prescribe it to you.
Just for your own peace of mind.
Another kind of referral is for mental health and self-esteem support. Not many people had asked for (or been offered) professional help with emotional impacts from acne though. Marga was offered anti-depressants but didn’t want to take more tablets in addition to antibiotics for her acne.
Rebecca picked her acne. It became an obsessive behaviour, even after her spots had cleared up. She would like her GP and local Child and Adolescent Mental Health Services (CAMHS) to know more about the psychological condition dermatillomania.
Rebecca picked her acne. It became an obsessive behaviour, even after her spots had cleared up. She would like her GP and local Child and Adolescent Mental Health Services (CAMHS) to know more about the psychological condition dermatillomania.
Age at interview: 18
Sex: Female
Age at diagnosis: 12
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And how about when you went back and wanted some support and some help with dermatillomania?
Well, originally the doctor that I saw for dermatillomania, he just thought I was a bit weird. He just like, he asked me to show him what I was picking at and he just looked at me kind of dazed out like, “There’s nothing there.” And so he kind of just referred me to the mental health services cos he didn’t know what to do. He didn’t know what it was.
And what happened after you were referred to the mental health services?
Well, the person that I saw wanted to kind of, not see me sort of thing. Because she just thought it were like a skin condition, even though the GP previously said it’s not really relevant to the skin condition, but-, because I didn’t really have one at the time when I went to see the GP. So they kind of wanted to send me somewhere else.
And is it mostly since then mental health services rather than dermatology that you have seen? Or have you seen both?
I actually haven’t seen a dermatologist at all. Because I was adamant that it was something that I knew wasn’t related to my acne anymore, because my acne wasn’t always there.
But they wanted me to go to see a dermatologist. But like I knew that it weren’t related to that.
Naomi felt anxious about her medical appointments and didn’t feel her doctors were interested in hearing about the emotional impacts of acne.
Naomi felt anxious about her medical appointments and didn’t feel her doctors were interested in hearing about the emotional impacts of acne.
Age at interview: 22
Sex: Female
Age at diagnosis: 9
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So there was never any time to explore the emotional side of the of the condition or, or really like talk about the impact it had on my life because they were always just interested in the medical perspective and I guess like that was what I was looking for from them, I just wanted then to fix it. But like yeah I could never really have explained how much it meant to me and yeah I think that was quite, quite kind of almost hurtful just because, for them, I was just like five minutes of their time just writing out a prescription and yet for me that appointment meant so much and like I’d be worrying about it for days beforehand. And like I’d usually be crying before I even got to the appointment because just like going into the dermatology unit of a hospital was just like so emotional for me and like and then like having to wait for so long. And yeah at one time it was like an hour and a half but usually it wasn’t as bad as that. but yeah and you’d have this like appointment and I would have been like thinking about it for ages and thinking about what I was going to say and all this kind of stuff and I’d get there and my mind would just be completely blank and all I could do was just sit and cry and like answer questions and it was just miserable [laughs]. and in fact like when I, so, the last course of Roaccutane (isotretinoin) I had three appointments with the consultant and like the first one was just a complete mess, I just cried through the whole thing and then the second one I was doing really well and I hadn’t cried until I sat down in the chair and he turned to me and he just said, “How are you doing?” and I just broke [laughs]. Because I think like the first couple of months of the treatment are always kind of the worst because everything feels like it’s getting worse because obviously it has to get worse before it gets better, and all that kind of thing. and then the third one I managed to get through without crying but it was just like, you know, and it felt like such a waste of an appointment because I had so many things that I kind of wanted to say about like how it affected me. But they never asked so, you know, yeah, we never really talked about that. And they’d always try and like make small talk [laughs] he’d be like, “Oh, so what are you doing at university?” and it’s like I don't want to talk about this, I want to talk about the fact that this is like destroying my self-confidence and like really ruining my life and I just want you to fix it [laughs].
Ollie had positive experiences with his dermatologists understanding about how young people might feel about their acne.
Ollie had positive experiences with his dermatologists understanding about how young people might feel about their acne.
Age at interview: 16
Sex: Male
Age at diagnosis: 13
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I know there's obviously a massive range in how people feel about their acne. A lot of people, destroys their confidence I think, and with some people they don’t really mind too much. And the, obviously the dermatologists and the GPs know that whole range, and so they treat everyone as sort of like that their acne is a priority, which I mean in a dermatology clinic that’s…you go there to get your acne sorted out and although it was sort of slow to get the appointment, but that was just because it's quite a complex thing to do. To get the actual treatment was really, really fast after I got there, and obviously they make it a priority; they know that for some people it's really, really… impacts heavily on their life, so that they know how to get it quickly and so and I thought they were really helpful and really understanding overall.
It was usually the young person’s parents who encouraged them to see a doctor and sometimes family members came to appointments too. Others preferred to go to appointments alone but often talked to their parents about how their acne was and treatment options. Chris wanted to be “independent in that sense” as he felt “it’s my skin condition, like, I’m old enough to book a doctor’s appointment and go get this sorted out”.
Molly finds it helpful to sometimes have her mum’s support with acne appointments and treatment.
Molly finds it helpful to sometimes have her mum’s support with acne appointments and treatment.
Age at interview: 20
Sex: Female
Age at diagnosis: 11
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Do you remember what sort of age that first transition would have been where you started going to the appointments on your own?
I think it was probably like once I was just going for like, so I initiated a lot of check-ups on my own, so the doctor would be like maybe come back in like two months and when it was just check-ups like it didn’t really make sense, and I wasn’t having any like side effects, it didn’t really make sense for my mum to come because I was literally just going there to say ‘it’s all fine can I have another prescription?’ So once I was like in a course of medication, she didn’t come but when I was exploring my options and going to different doctors, that’s when she did come. And like so, I mean it probably sounds quite sad, when I go to the Roaccutane (isotretinoin) my mum is coming with me to the doctor just because like I think asking for like a referral can be quite daunting so it would be useful to have somebody else there.
And when I go to the dermatologist my mum will also probably go with me, because I mean like she’s also very aware of like the history of it so it’s sometimes useful to have somebody in the surgery with you. Especially if it’s something you’re embarrassed about, like my mum’s not gonna be embarrassed on my behalf about it, I say she’ll probably be, she need, she doesn’t generally interject but like if, if I wasn’t saying something like she’d probably be willing to mention it.
Yeah. So that’s like, she knows your history of treatments and stuff as well.
Yeah, I mean she knows kind of, I mean more like my history of like how long I’ve had it like and she knows I’ve had a lot of like medication. I mean even I’m not very well versed in like the history of medication, I’d probably need to look at like my medical records.
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