Some young people were happy with the help they had received from GPs and dermatologists, but many had advice they wanted to share with medical professionals treating young people with acne. Key messages were:
• be aware that although acne is a physical condition, it affects many people emotionally and psychologically.
Quite a few people said it was important for doctors to appreciate this and show understanding about how it impacts on their self-esteem and mood. A few people felt the teenage years are often a particularly difficult time with increased importance put on appearance, meaning acne can have big emotional impacts. Even if you don’t think their acne is severe or anything to be worried about, it may have a huge impact on their confidence, self-esteem and social life. Harriet says teenagers are “often quite self-conscious” and so doctors need to “tread carefully”. Sarah remembers feeling “quite offended” when she got a letter saying her acne was ‘severe’.
Ish thinks it’s important for doctors to be “understanding” about how acne affects a young person’s life.
Ish thinks it’s important for doctors to be “understanding” about how acne affects a young person’s life.
Age at interview: 22
Sex: Male
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Yeah. Exactly, as in like, people, especially with skin care, since it’s something, to be honest it’s the first thing other people notice about us, our skin and everything, our facial features. It’s like, I don’t even know, they are so understanding about it that this will affect your life, and we’re here to help you throughout that whole process and they’re, I don’t know, it just feels like they thrive to be, you know, bring the best out of yourself. So they’re not going to be like, “Yeah, this isn’t going to leave you a scar or anything like that.” They’re not guaranteeing anything, but your still feeling welcome there and you know that they’re trying their best to help you.
Naomi thinks doctors should have checked to see if her medications were working.
Naomi thinks doctors should have checked to see if her medications were working.
Age at interview: 22
Sex: Female
Age at diagnosis: 9
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Just like kind of they never really checked whether stuff was making a difference and like there were times when I’d just sort of ran out of medication or whatever and just thought what's the point of going back cos they’ll just give me more of this stuff and it’s not going to make any difference. So then I’d just not go and then just wait until I felt so bad that I had to go and make another appointment. And they never sort of like checked up on me to see like whether it was working and I just felt like it was never, never enough progress. So yeah, I think just kind of like taking it really seriously and like not wasting loads of time [laughs]. Cos I felt, I felt like I did just waste a lot of time being upset and unhappy about it and that could have been quicker and less painful [laughs].
Nina suggests doctors read between the lines and listen carefully to how acne is affecting the person who has come to see them.
Nina suggests doctors read between the lines and listen carefully to how acne is affecting the person who has come to see them.
Age at interview: 20
Sex: Female
Age at diagnosis: 12
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And it really is like you know, I think because like people at that age they don’t have like mortgages or things like that, you know, what job do I have to worry about so how they look is really important and yeah just recognising you know paying a bit more attention to what the young person is saying if they say ‘Oh it bothers me a bit’ realising that maybe a lot of the time that means it bothers me a lot but I don’t want to say that so taking the time to listen yeah I think and take it more seriously, not as in I don’t think people do an inadequate job but if, if like I mean I think they are all great professionals, you know, I don-it’s not like I’m saying they don’t do a good job treating people for acne but if they, I think the one thing that would be missing would be like the voice of a young person telling them actually it really is a huge issue for some people and you know, also those people tend to probably play it down and like, you know, please listen to them you know cos you never know maybe they might go on to be like really, really depressed or something like that or they might not or they might go on to have like scars on their face or they might not, like who knows but like you don’t know do you so like you know, that’s why yeah it’s important to just try and see things from their point of view and you know maybe going and find out, talk to some more young people about how they’ve experienced it because like that’s what we’re all. Yeah cos again like they don’t have much time with you do they just thinking about young people’s experiences thinking back to when they were young and stuff like yeah so I think just having a little voice in the back of your head of a young person being like yeah.
• understand that it may have taken a long time for the young person to visit a medical professional about their acne.
Many of the young people we talked to had initially tried to manage their acne without seeing a doctor and it could be years before they decided to see a medical professional about it. Seeing a doctor can feel like a big step. Rebecca found it “quite daunting” going for the appointment with her GP. Many said they wanted their GPs to refer them to dermatologists when initial treatments hadn’t worked. Some were concerned about the potential waiting times to see a dermatologist, especially if they felt their acne had already lasted longer than expected.
Hester explains how a young person may feel “a bit embarrassed” about asking for help for acne, and may have low self-confidence, so it’s important to reassure them.
Hester explains how a young person may feel “a bit embarrassed” about asking for help for acne, and may have low self-confidence, so it’s important to reassure them.
Age at interview: 21
Sex: Female
Age at diagnosis: 15
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To take it seriously and to know that the person that's come in to you might actually not really realise that what they have is, is serious, or that it will be taken seriously. That they're probably going to be quite embarrassed to be seeking medical advice for something like that. They probably think that they should really just be buying, you know, face washes and stuff like that. And they probably are going to feel a bit embarrassed to be asking for help. And yeah, just to be, yeah, positive. And to offer them something quickly and to say, “You did the right thing in coming to a doctor.” And I think putting people at ease as well that a lot of the young people who have acne will be, you know, they're young so they're not like necessarily as confident, especially in a medical environment where as like, you know, medical professionals and you're kind of sitting there as a young person, having not really had much experience with doctors and professional environments. And feeling a bit out of place. But also, as someone who has acne, you're naturally going to have very low self-confidence. So I think knowing that most people that walk into that room are, are going to be really lacking in confidence in general. And yeah, are usually, are usually used to trying to keep their head down, so [laugh]. They're not used to like being kind of assertive and saying, “Arr, I want treatment for this.” So, trying to put people at ease is quite important and making them feel quite relaxed in that environment so they can have like a open discussion about what they might want and they can ask lots of questions as well cos they might not be that knowledgeable. And so they can ask questions and maybe just even explain to people what acne is. And yeah, just really breaking it down, what you, yeah, what you can do for them.
Feeling you are being listened to is important and Deborah says that medical professionals should be aware how even “sighing” can put people off coming for help.
Feeling you are being listened to is important and Deborah says that medical professionals should be aware how even “sighing” can put people off coming for help.
Age at interview: 25
Sex: Female
Age at diagnosis: 12
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It's sometimes the GPs and the nurses that spend all their time dealing with infections and diseases, and proper - proper medical, medical things that can sometimes make you feel not listened to. Or just some offhand comment. Or even something as simple as just sighing can, can really put you off going and seeking medical help, because you don't feel like you're being listened to. Or that it's not important enough. So just really taking the time to listen. Cos if someone's - it's probably taken them a really long time to get to the GP. So if they've taken the time to get there, make the appointment, then you need to take the time to understand why they're there, and appreciate where they're coming from with it, and that they need help.
While it’s good to be honest about the extent of someone’s acne, Molly thinks doctors should acknowledge that a young person coming to see them may already feel “mortified” about being there.
While it’s good to be honest about the extent of someone’s acne, Molly thinks doctors should acknowledge that a young person coming to see them may already feel “mortified” about being there.
Age at interview: 20
Sex: Female
Age at diagnosis: 11
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My advice is to just be, be really aware and of the fact that like a lot of teenagers who go to doctors like they’re probably at an age where like it’s just, it feels like it’s mortifying and it’s like the- the worst thing and they probably don’t wanna be there. And it’s not something that I don’t think, nobody enjoys it and like yeah just be really aware that like it’s probably really difficult for them to come to you and, and kind of I think it’s really important to be honest about how severe it is but also be aware that like being too, like there’s got to be a line like being too expressive about how bad it is can also be really unhelpful. And also be honest in the sense that like I’ve never had a doctor who’s pretended it’s gonna work immediately and that’s been really helpful. But had I been to a doctor who had said like ‘this is, you know, a cure, here you go’ that would’ve not been, I would, that would’ve been really upsetting when it wasn’t. Cos yeah it, you do want a miracle cure and the fact is there isn’t a miracle cure so you should never pretend that there is. Which I’ve never had experience of but I would just warn against that in case.
• recognise that young people with acne will have different expectations of the type of advice and help they want. Some will want to know lots about acne and be involved in decisions about treatments, but others won’t.
Some people said it was important for doctors to get a clear idea at the start what each person’s priorities were. For some people, it is important to find out why they have acne and to know what they could do to prevent or manage it. Having a doctor explain a little about the causes and triggers of acne can be helpful. As Harriet said, knowing about the hormonal causes of acne could “reassure them that it’s not because [they’re] doing something wrong”. For those who were interested in self-help, getting advice about diet and changing bedding/towels regularly was welcome information. Others were more interested in their doctor taking the lead in finding a solution. Abbie thinks many teenagers just want their acne “gone”, and aren’t interested in “the whole specifics”.
For Becky, trying to find the cause of her acne, so that she could prevent it, would have been helpful.
For Becky, trying to find the cause of her acne, so that she could prevent it, would have been helpful.
Age at interview: 19
Sex: Female
Age at diagnosis: 16
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I think they should firstly provide, maybe provide more options, and maybe to, try to find out the, the main cause of the acne. Because sometimes they just suggest a lot of things for me not, to do or not to do. But it really put a lot of restrictions to my life. So maybe I think doctors should find the main cause of the acne and, yeah. So, for example, I don’t think that chocolate is a main reason for causing me acnes. So if I completely quit eating chocolate, which is my favourite, it just reduces a lot of fun in my life [laughs].
Harriet says she would have found it useful to have had quite specific advice about managing her skin from her GP.
Harriet says she would have found it useful to have had quite specific advice about managing her skin from her GP.
Age at interview: 21
Sex: Female
Age at diagnosis: 12
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It’s a difficult balance. I think it’s something that you want early on. Cos like my first trip to, to a GP, it would have been so useful to maybe have lists of things that you should try not to do or like have a, an outline of your routine or, and saying things like, “Try not to touch your face too much. Always make sure, you know, you’ve got a clean towel and a clean pillowcase. Drink lots of water. Get lots of fresh air.” Things like that, just really simple, obvious things, but kind of given to you in a, in a sort of accessible way when you first go to the doctor. It would be so helpful and kind of would save you all that time of trial and error and maybe not finding things out until a few years later. But when it gets to the point where you’re quite late on in the process and people are telling you these things, it just, it gets a bit tiring. Because you’re like, “Well, obviously I’ve tried that”.
• be open about treatment options
For some, it wasn’t just important for doctors to recommend or prescribe a product but to discuss the benefits and side effects/risks of treatment options as well as advice about prevention. It could be frustrating if a doctor was prescribing one cream after another without considering the individual’s situation. People valued knowing that their doctor had put thought into the treatment options presented to them. Molly felt it was important that GPs be honest with young people that there isn’t a “miracle cure” for acne. A few people who had taken isotretinoin and benefited from it felt it should be offered earlier and that the worst side effects shouldn’t be over stated.
Being given different options was important to Emma.
Being given different options was important to Emma.
Age at interview: 20
Sex: Female
Age at diagnosis: 10
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I guess looking back to what you said earlier about how much input and sort of decisions I got to make about my treatment. I think that’s a good thing like being, like them suggesting to me, “These are two topical treatments and which one do you think you would sort of prefer?” I think that was quite a sort of important thing to like make me feel like I had some control over like improving, in trying to make, you know, sort of improve the condition of my skin rather than just being sort of given sort of different things and feeling like ‘arr, it’s not working. You know, I want what I wanted’ so I think that was important. Yeah, particularly. But also being understanding, like having the treatment after, being treated for the acne then having the scar treatment. The fact that my dermatologist recognised that it was something that was bothering me. I think that was really good because I really did want something done and I didn't feel I could necessarily ask for it. But she sort of said, you know, “These treatments are available and other people have had them after the acne. Is that something you’d like?” That was really important.
Although he himself developed depression whilst on isotretinoin, Will thinks the risks of the treatment should be balanced with the likelihood of it happening.
Although he himself developed depression whilst on isotretinoin, Will thinks the risks of the treatment should be balanced with the likelihood of it happening.
Age at interview: 21
Sex: Male
Age at diagnosis: 14
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I think there’s a lot of big scary talk in terms of, well from what I remember, I remember being quite terrified of the consequences [laughs] like I thought that, you know, I would commit suicide or my liver would just pack up or whatever. I think there’s a lot of quite severe talk when they describe the side effects, you know, at the end of the day everything has side effects, you know, from paracetamol, whatever. And, you know, they can be, you know, fatal, the side effects of paracetamol, you know, whatever, but I think in a way sometimes they ramp up the fear factor.
Maybe a little bit too much possibly and I think actually the more, the less severe sort of side effects in a way are more, should be more important to, to be discussed maybe. [Talking in background] So these, these more, these, yeah, like the emotional sort of feelings, the sort of dried up skin, all this kind of stuff I feel is less severe, but actually I feel like it’s got more, it’s got the capacity to affects more people than these, these kind of big scary events. So actually a focus more on these sort of side effects are actually more important than kind of the big scary talk of, you know, people committing suicide and whatnot I think that’s maybe less important in many ways.
Because actually that, you know, those cases are in the minority I think. I’d imagine it’s safe to say like I think, you know, every drug comes with its risk and, you know, it is a, it is, yeah it can be, it can be dangerous, but I think actually being made aware of these more sort of subtle or these more widespread issues I think is more important probably for health care professionals. But I think yeah, I think they’re quite right in giving you, you gotta give the patients’ the facts and stuff, you know, that is important. But sometimes yeah this big scary talk is, I think it put a lot of people off it. I think I was very lucky in the sense that my mum was quite a, she was quite reasonable, she was quite balanced, you know, in her, sort of understanding of like, you know, medicine and whatnot, so she, you know, read up on a lot of journals about, you know, the sort of pros and cons and stuff, but I think if people didn’t have that access to that sort of knowledge I think a lot of people would be like there’s no way I’m touching that. There’s absolutely no way I’m doing that.
So I think it’s important to, yeah. To make people aware that yes, you know, there are these, these big, big sort of risks, but actually, you know, these are in the minority of cases and actually you will, you will go through, you may go through some kind of difficult times, but ultimately they’re not that, for me, maybe I was lucky, that it wasn’t that bad kind of thing, you know, obviously it wasn’t fantastic, but it wasn’t that bad.
• make time to talk through the emotional impact of acne as well as the physical side and treatment options.
As Naomi explains, “I want[ed] to talk about the fact that this is destroying my self-confidence and really ruining my life”. Some people feel it would be helpful if doctors gave encouragement and enquired about how acne was affecting people’s self-esteem and mental health. Only a few people mentioned doctors asking them about mood and this was usually in the context of them taking isotretinoin, for which depression and feeling suicidal is a possible side effect.
Naomi thinks medical professionals should take the emotional side of acne more seriously. Her dermatologist never took time to talk through the emotional impact her acne was having.
Naomi thinks medical professionals should take the emotional side of acne more seriously. Her dermatologist never took time to talk through the emotional impact her acne was having.
Age at interview: 22
Sex: Female
Age at diagnosis: 9
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I just think that the most important thing would be like taking it seriously. Well I mean not that they didn’t take it seriously but just being so sensitive to the fact that it’s like, it’s such a big thing and like yeah maybe it is just a phase but like the most damaging thing is saying that to someone or implying it or just yeah just suggesting that its, it’s something that you need to get over and like. I think yeah, so treating it like a, like a disease like something that you can fix is just like, I think yeah that was really important for me and... And yeah just, I think like being sensitive to the emotional side of it because I think, I don’t know, like you don’t want to make comparisons but like people with other diseases like, you know, cancer or diabetes like obviously it has a massive impact on their life but having something so obvious on your face and particularly in such like a formative time of your life has a huge impact. And I think I never really felt like the medical professionals really understood that and maybe that was my fault for not saying anything but like yeah. Sometimes I just thought like ‘do you not realise how bad this is?’
And you just, you’d be seen so quickly and they’d just ask, “Is this working? Have you had any side effects? Go and do a pregnancy test. Pick up the prescription.” and yeah 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.
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.
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