Young people wanted healthcare professionals they had seen about eczema to have reliable knowledge and give effective treatments, to be respectful and have good ‘bedside manner’.
Some young people had GPs and/or dermatologists/specialist nurses who they trusted and found really supportive and friendly. One thing they stressed is that doctors should give information that is easy to understand to the young person with eczema (not just their parents/guardians).
Anissa’s doctor directed information about eczema to her parents when she was little.
Anissa’s doctor directed information about eczema to her parents when she was little.
Age at interview: 20
Sex: Female
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What do you remember knowing about eczema as a child?
Not a lot. Obviously they direct everything to your parent. Which is a problem because once they’ve started directing it to your parent, they feel like you know what they’ve already told your parent, as an adult. So they don’t retell you the things they expect you to know, even though obviously you don’t know.
But I just, I just knew that I was in pain and that I had to be bandaged up. I didn’t really understand what it was wrong with my skin. No, like, I was never really told anything. I was just, lived through it without any information. Just being told, “Don’t scratch and do what we say.”
So really when you get to an adult they should, or a teen, because teens do have comprehension [laughs]. But like, they should be telling you exactly what your condition is, as if it was from new to start off with. Because the understandings different now and you can fully comprehend what it is, and they should be telling you that. But they just believe that as a child you understood and you’ve carried on.
Shams would have appreciated his doctors talking more about the social and emotional impacts eczema can have.
Shams would have appreciated his doctors talking more about the social and emotional impacts eczema can have.
Age at interview: 18
Sex: Male
Age at diagnosis: 7
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A lot of ‘em straight away from mentioning stuff for like the…I don’t know what…if it's deliberately or unintentionally, but none of them mention the sort of social implications that eczema would have, and I would be more happy if they did cos one of my first experiences after having really bad eczema I was in school for first day, and I remember this girl making a really bad comment towards me, cos back then I still used to wear t-shirts and cargo pants, walking around as I normally did before I had eczema. And those comments sort of caused me to be the sort of self-covered self I am, so I always now wear long trousers, long sleeved tops and… It r-really would have helped if a doctor would have said, "Look, if, if you did go back to school in this state, you may get a few comments or something like that; just be wary," and stuff like that. It would’ve helped, but I got no warning and there's sort of, not bullying, but sort of nit-picking, almost sort of alienating feeling that of some of the comments people made after seeing my condition was really, really hurtful when I was…especially when I was young, it was really hurtful during that time yeah.
Some young women, like Katie-Lauren and Naomi, said they prefer seeing female healthcare professionals as they feel more comfortable talking to them or having their skin examined. Others, like Vicky and Jessica, were less concerned and saw the examinations of eczema as just part of a doctor’s job.
Not everyone had positive experiences with the doctors, nurses or pharmacists they had seen. Feeling dismissed or patronised knocks a person’s confidence and makes them doubt whether the health professionals have their best interests at heart. Repeatedly being told to moisturise and not to scratch their skin was unhelpful advice for people who had coped with eczema for a long time. Vicky felt like the dermatologist was “nagging” her and didn’t trust that she had been using the prescribed creams.
Most of Hazel’s experiences with GPs have been positive. However, one doctor made her feel self-conscious with a comment.
Most of Hazel’s experiences with GPs have been positive. However, one doctor made her feel self-conscious with a comment.
Age at interview: 21
Sex: Female
Age at diagnosis: 3
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They just tend to like have a look at what it looks like and, obviously if it's not that bad when I go but I know that it's been worse, it's quite hard to tell them that I've been in pain or it's been quite uncomfortable, so that’s been quite hard. I think the last appointment that I had, I was quite disappointed because like the doctor kind of made a comment about something that I hadn’t gone in about and she was just like, "Oh like your top lip looks quite dry and maybe you should get something for that," and I was like, "Oh that’s not what I came in for but yeah OK." And I just sort of left and I was a bit upset by that because it's not really anyone's place to say that but, yeah, I think because I had gone in with like the intention of being prescribed a new sort of steroid creams, yeah that was a bit uncomfortable. But apart from that, everything else has actually been really good. They’ve sort of given me either the same thing or said, "Oh do you want to try something that’s similar or, you know, do you want to try something to wash with as well as to apply like daily." So, yeah, they’ve been really helpful apart from that one time.
Sarah’s eczema returned whilst she was at university. Because she’d had it since she was a child, she found it unhelpful having GPs repeat what she already knew about eczema.
Sarah’s eczema returned whilst she was at university. Because she’d had it since she was a child, she found it unhelpful having GPs repeat what she already knew about eczema.
Age at interview: 23
Sex: Female
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He just gave me the creams. Which was kind of what I wanted anyway. Like I kind of felt like ‘I know what’s going on. Like I’ve had eczema before. I just need the creams’. He was like, “Cool,” gave me the creams. And then, then when it wouldn’t went, wouldn’t, sorry, when it wouldn’t go away and I kind of thought ‘okay, this isn’t working like. Or I need some, something else now. I need to try a different treatment’. And I went back. I remember the GP was quite patronising when she was talking to me about it. So she was like, “Well.” You, like there’s some things that if you’ve had eczema for a while like you know, okay, you’ve got to wear cotton clothing. That’s one of the first things they tell you. And she was like, “Oh, like, well, are you wearing cotton clothes?” I was like, “Yeah, yeah, I know that wearing cotton clothes helps.” She like picked up my cardigan and was like, “Oh, well, is this cotton?” And I was like, “Well, I don’t know if this is cotton or not. Like this is quite a loose cardigan. I don’t think this cardigan is giving me eczema every day.” It was really strange. And you feel a little bit like ‘I’ve had this condition and I’ve told you I’ve had it since I was born. Like that kind of advice isn’t gonna help me. I need like some more, more advice really and like more detailed’. Yeah, it was a bit annoying [laugh]. I think they’re not necessarily like experts in eczema. And I think it’s a bit unfortunate because it’s not the sort of condition that you usually need to go like to a hospital about. And it’s definitely not-, I mean most people have eczema and they don’t even go to the GP about it. They just like deal with it. Because it’s, it’s not like a hugely sickening thing that you can’t cope with. So like most eczema I think is treated by GPs. And then like it would be great if they were more clued up on it.
Being both ‘independent’ and ‘supported’
Parents had often first taken the young person with eczema to see a GP. As they got older, some people wanted to be more “independent” and go to appointments alone. Laura says it was when she moved from home to university that seeing doctors about her eczema went from “we” to “just me”. However, some people found it helpful to continue having a family member or close friend involved. Even if the parent didn’t sit in on the appointment, sometimes they gave advice about what to say to the doctor. Jessica’s mum helped her get appointments and paid for private dermatology care.
Shams' mum took him to doctors’ appointments when he was little. He listened to the doctor and translated for his mum.
Shams' mum took him to doctors’ appointments when he was little. He listened to the doctor and translated for his mum.
Age at interview: 18
Sex: Male
Age at diagnosis: 7
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That was the sort of, my first taste of sort of random independence where I had to start translating for my mum cos there would be occasions where doctors could not get translators or interpreters in. So, it would kind of end up being my responsibility to, having to make sure I understood what I had to do with certain creams and how to use them. My mum also had to understand it, and it was really difficult in my early years cos admittedly I was naïve; I was a child so half the time I didn’t pay attention, or I ignored all the doctor was saying which usually brought back problems later on when you got the medication. Fortunately enough obviously medication has the instructions written on but if a doctor has sort custom instructions, like specifics.
So, he'll say like sort of ten millilitres of this, or something like that, and if a prescription only says, 'Take it twice a day,' that’s when the real problem kicks in. Medication may say take it twice day, but it won't specify how much you're meant to take and if I haven’t been paying attention that’s going to make a big prob…that’s gonna cause a big problem to a dosage or what I take. So, it’ll later result in having to call back the doctor and my-myself being there present, phoning the doctor up and saying, "How does so and so work cos I did not catch you earlier?"
Hazel started going to GP appointments for her eczema on her own when she was 16/17 years old.
Hazel started going to GP appointments for her eczema on her own when she was 16/17 years old.
Age at interview: 21
Sex: Female
Age at diagnosis: 3
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I didn’t really know what to say at first. It is a bit of a weird thing not having someone who can just say, but then it makes a lot more sense because you're the person that needs the help so, you do know what to say, it's just thinking about it a bit more. And then being able to respond to anything they ask you, and not just that turn and say, "What did I say?" It's like making your first phone call or like making your first appointment; you just have to get past it, but yeah it was fine.
Cat found it quite easy to get a dermatology referral from her GP, after her mum encouraged her to ask.
Cat found it quite easy to get a dermatology referral from her GP, after her mum encouraged her to ask.
Age at interview: 24
Sex: Female
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And do you recall the first time that the dermatologist was mentioned when you went back to the GP in university?
Not really no. I think I might have asked. I think, well I think my mum told me to ask [laughs]. I think that was the sort of the first thing, and they're like, they're like, "Well come back in like two weeks or something, and if it's still not fine and sort of refer you then," sort of type thing. But yeah I think it was, yeah my mum who was like just go and ask to be referred, which it was actually quite easy, I thought it would be more difficult than it was, but they were sort of like, "Yeah sure," so.
What was it you'd anticipated might be difficult about getting a dermatology referral?
I just thought that GPs just wouldn’t refer you cos, you know it's not like, it isn't a massive thing. But once you’ve been back for sort of three or four times within sort of two months or something, I think they just sort of realised that this sort of normal stuff isn't going to work.
Another change over time for some young people was feeling more confident to speak up about what they had like for their eczema treatment or to ask questions.
George feels he has become more confident with ‘maturity’. This helped him tell his doctor how much eczema was affecting him and he was referred to a dermatologist.
George feels he has become more confident with ‘maturity’. This helped him tell his doctor how much eczema was affecting him and he was referred to a dermatologist.
Age at interview: 17
Sex: Male
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So my family GP who I’ve-, I trust quite a lot. She’s known I’ve had eczema for a long time but I’m not really sure why she hasn’t referred me to a consultant dermatologist so a specialist because I think she didn’t realise how bad it was until I was more vocal about it which was when I could. Cos when I was young I didn’t really know how to explain it so my mum had to do it but so yeah, now when I can talk about it and how much it hurts she understood how bad it was and sent me to someone who knew what they were doing.
Maham takes in a list of questions to structure the topics covered in her medical appointments about eczema.
Maham takes in a list of questions to structure the topics covered in her medical appointments about eczema.
Age at interview: 21
Sex: Female
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The problem I’ve found is that when I go in I have quite a long list of questions to ask so I say, “Oh I’m gonna talk about this, I’m gonna talk about that”, and then when I go in, because it’s just all quite hurried I either forget all the things I wanted to ask, or I’m just like, “OK”. They say, “Do you have any more questions?” and I say, “No, I don’t”, but I actually do but because their clock is ticking they don’t want me to sit around and wait until the question comes back to me. So then sometimes I sort of would go in with a list of questions so that I wouldn’t forget.
But most times I would just go in and then I would forget what I wanted to ask them and then… It’s also if you go in with four problems but you’ve only told them you’re coming in for one…So I’d be like, “Oh, I’d like to see someone”. They’d say, “What, what’s the matter?” And I’d say, “Eczema”, but then I’d also have like, I don’t know maybe something else on the side, then you say, “Oh, I’d like to ask you one more thing”, and then they say, “OK, sure”. And then you say, “One more thing”. And then they say, “OK”. And then you’re kind of embarrassed to ask the fourth time. So I’d find, yeah, just sort of initiating the conversation would be a little bit more difficult but towards the end I’d just go in with a list of questions and then they’d know that I had this agenda in mind. And that was a bit easier.
Aisha says that the doctor telling you about a plan/pathway for treatment can offer “structure” instead of feeling like you’re being given cream after cream (emollients and steroids). Having a choice of treatment types and brands was valued. Ele would like more of a role in deciding treatments rather than her doctors’ “like it or lump it” attitude. Hazel likes that her doctors are “very aware that a lot of people might need to use alternative things and sort of change it around rather than just stick with the same thing”. Laura is interested in trying homeopathy (a kind of alternative and complementary therapy) and wants to talk to her GP about this.
Some young people feel they now take the lead on treatment decisions, rather than following doctor instructions. Aadam says he is very informed about his eczema and now only sees his GP to get prescriptions filled out. Others don’t feel equipped to make decisions on their own about their eczema and could feel let down by their doctors’ lack of support.
Anissa says that the GPs she’s seen don’t take much interest in her eczema. For example, her doctors haven’t spent much time examining her skin.
Anissa says that the GPs she’s seen don’t take much interest in her eczema. For example, her doctors haven’t spent much time examining her skin.
Age at interview: 20
Sex: Female
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They’ve never wanted to look at it unless I’ve insisted on them looking at it. So when it first spread to my breasts, I actually didn’t know what it was because it was, it looked, well it looked like eczema but it looked a lot worse, especially because I didn’t expect it to go there. So only once I’ve insisted that they look at it. But they’ve never been like, “Oh, well you’ve been on this cream. Oh, how long’s it been sore? Maybe I should take a look at it. Maybe you shouldn’t be using your steroid cream. Maybe you should be on a better one because oh, it doesn’t look good or anything.” They’ve never wanted or cared to look unless forced to by me.
Okay.
[Laughs]
Okay, so they just sort of take what you say about it and just assume that that’s…?
Yeah but what I say about it, I don’t talk to them as if I’m informed. I’m like, “Well, you know, it’s kind of like, you know?” And they’re like, “Whatever.” [laughs].
Okay.
So, it’s not like I’m like ultra-confident and like, “Yes, this is what I need.” And they’re like, “Well you know your skin.” It’s just like, “Oh, well, meh”
So what’s it been like when you’ve sort of persuaded a GP to look at an area of eczema? Like, you sort of said when it was on your chest. What was that like?
It was really quick for them to say, “It’s eczema. You need to do this. Just apply the moisturisers. Apply the normal cream.” Which makes it even more ridiculous that they don’t just do that as standard because well obvious-, eczema’s really easy to spot, especially if you know the person has eczema. So seeing a rash on a different part of their body, you can pretty much guarantee that it is. But when you’re the person, you can’t. You’re not a doctor. You don’t know if it looks slightly different. If it’s in a different place you didn’t expect, you don’t know that.
Evie uses ‘photo diaries’ to record how her eczema changes. She shows these to her dermatologist to help them understand her situation.
Evie uses ‘photo diaries’ to record how her eczema changes. She shows these to her dermatologist to help them understand her situation.
Age at interview: 20
Sex: Female
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Could you say a bit more about photo diaries and what those are?
Yeah. Well basically I did it a lot round the time of my exams, so kind of every couple of days or when it was really awful, and especially when you get out the shower as well and you can see like the borders of your eczema where it's gone red. Take a picture, sort of make…k-keep a note…keep a note of like the date and time you took it on your notes, and then you can tell the doctor like, "Ooh this is what it looked like at this cold snap, for example like in the winter, and this one looks like now and now it's warming up," so they can see actively that, yes you really do want like to fix this, and they can see exactly how bad it was and the seriousness of the situation, not cos you’ve got it on a good day and it's quite healed up cos they could just discharge you then and there and you…you'd be none the wiser.
Yeah. And how do your doctors respond when you’ve sort of shown them the photo diaries you’ve kept?
They're quite impressed actually. Like, I don’t know if they don’t see it very often or if they, they see I'm clearly quite keen to find an end to this, and they, they are quite appreciative cos they flick through and they see, OK well that’s…especially when they're showing the medical students as well – you're helping educate them at the same time.
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