Some young people see GPs or their dermatologist frequently. Aisha remembers being “in the doctors like every other week” for eczema when she was younger which “blurred into one massive experience”. Going to the doctors can be time-consuming, especially if you have to travel a long way. It can mean taking time off school, university or work for appointments. Being unable to see a GP soon enough can cause problems, such as when Anissa ran out of her prescribed steroid creams.
Lizzie has seen doctors (mostly GPs) many times for her eczema.
Lizzie has seen doctors (mostly GPs) many times for her eczema.
Age at interview: 19
Sex: Female
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I've probably seen them all my life, even in the beginning. But yeah I've been visiting a doctor for my eczema forever so, probably the first time I saw them, and I remember, is around like six years old maybe. But it's always been the same, like just getting prescriptions and like prescriptions over and over again, just reapplying for the same prescriptions all the time. So it's like a second way of life; you just end up, you know, cream is just part of your daily routine.
If a person gets on well with their doctors or nurses and feels there is progress being made with their skin, frequent appointments can be reassuring. For others, frequent appointments became a repetitive cycle: the same advice, the same treatments, no improvement.
Continually going to the doctors and trying prescribed medicines without any improvement is frustrating. Prescriptions can add up to be very expensive. Some people try to avoid going to the GP unless their eczema is really bad or became infected. Feeling fed up with repetitive doctor appointments made young people keen to be referred to dermatology specialists in the hope that more could be done to help with their eczema.
Anissa feels that the GPs she’s seen haven’t always appreciated how much eczema affects her.
Anissa feels that the GPs she’s seen haven’t always appreciated how much eczema affects her.
Age at interview: 20
Sex: Female
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So, when you’re dealing with doctors who don’t really, who don’t think of it as an actual condition – they just think of it as like, ‘oh, you’re being really, you’re just thinking about your appearance.’ When in reality you’re in pain and it’s, it, your skin’s changing and they’re not really giving you the information that you’re looking for. So you want to know, “Oh, what’s happened?” and they’re like, “Well, it happens.” And you’re like, “Well what does this mean?” And you feel like you’re not getting the right responses. But also when they’re giving you the creams, you feel like they’re not really telling you what the creams are doing. So you, so like I haven’t been told like, because I use steroid creams all the time, does that mean that my skin is eventually going to be very weak? Is it gonna mean that I have to use twice as much? Am I always going to be progressing onto stronger creams?
Is it gonna age my skin? And like, I’ve never really been told this. I’ve just been handed something and told like, “Try it. See how it works.”
Jessica saw many GPs and did her own research before being diagnosed with vulval eczema and receiving specialist treatment.
Jessica saw many GPs and did her own research before being diagnosed with vulval eczema and receiving specialist treatment.
Age at interview: 20
Sex: Female
Age at diagnosis: 20
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Over like summer, I started having like a really itchy like vagina. So now I sort of have vulvar eczema which is actually quite unusual. And obviously at the beginning with sor-that like—cos it’s, that’s really hard to go through the NHS because it’s quite like a gynaecological/dermatological problem, so no one really knows where to put it. And obviously, at the beginning they thought like, had an infection. Or like an STI and I’ve had like so many tests until Yeah, I was like telling my mum about it and she got quite frustrated, went to like a private doctor who finally diagnosed it as vulvar eczema and has given me like steroid cream and stuff.
So, like, when you like Google outright ‘itchy vagina’, the o-, first thing that comes up is you probably have an infection… that sort of thing. Yeah, I never really thought I had an STI, that seemed unlikely Yeah, for a while I was just sort of, sort of like, oh, I don’t really know what I have, but like oh they’ll figure it out. I am taking all these tests like, sort of thing. I’m pretty sure it was the Internet that first gave me the idea that I probably have eczema.
Some young people saw several different GPs because they’d moved (such as from home to university), couldn’t get an appointment to see the same GP each time or had deliberately switched to a different doctor. This could be very ‘hit or miss’ – sometimes they felt the doctor was better or worse than previous ones. Maham found she had to “explain my situation all over again” each time and would have preferred a consistent GP. Most people who had seen the same GP for years were pleased that the doctor knew them well.
Katie-Lauren talks about all the different medical professionals she’s seen and how they have helped (or not) with her eczema.
Katie-Lauren talks about all the different medical professionals she’s seen and how they have helped (or not) with her eczema.
Age at interview: 19
Sex: Female
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Where did you find out about the sort of antihistamines helping sort of limit and dampen down the eczema?
I only found out about that about six months ago. At university, I went to see the nurse and she told me about it, because doctors don’t really I don't know, doctors don’t really issue antihistamines for eczema. And maybe if you ask for them they would. I never thought about having medicine to control it. Because I always ask for something to help me sleep and I don’t really think they like giving stuff out like that. But it’s not really, it’s not really helping me sleep that I need. It’s stopping the itch, so the antihistamines work really well.
What was it like when you saw that nurse at your university? Was it your health centre or was it part of your…?
Yeah, it’s the medical centre which is part of the university. And I went to see her. I wasn’t really hopeful because nothing works. I’ve seen two dermatologists now and none of that’s worked. And she gave me, she actually explained to me, it’s the first time anyone’s ever explained why I have eczema like what causes eczema and the best ways to treat it. And he gave me a steroid and a big pump-y, like a big tub. And it really helped. I think it’s the first time I felt like anyone understood what I was going through. Cos she said that she had eczema when she was younger. So it was nice to talk to, like a healthcare professional who understood what it’s like having eczema.
And how does that compare to other times that you have seen doctors and the two dermatologists you’ve seen?
Well, at school, the doctors, I kind of felt like they push, they kinda push it aside. Like they’re not, they’re sort of like, “Oh, just give you a cream and it will solve it” or “You’ll grow out of it”, or “It doesn't really matter”. I did have one doctor in school who really tried, like she tried a lot and she was the one that referred me to a dermatologist and I was really excited to go see the dermatologist, because I’d been waiting years to be referred to a dermatologist. And then, I went to go and see him and he was not interested at all. He was really rude. And, he told me all the treatment I was doing was wrong even though I was telling him what I thought managed it, the things I’d found out that managed it. He was telling me that I was wrong, that I needed to forget everything my doctors have ever told me and he prescribed me medicine I’d had before and a cream I told him that didn't work. He wasn’t very nice.
Medical referrals – such as for seeing a dermatologist
Some people felt they received good medical care from their GP (some of whom specialise in skin) and were able to manage their eczema well with this arrangement. Others were keen to see a dermatologist, especially if they had been struggling with eczema for a long time without much improvement. For them, being referred by a GP to see a dermatologist (a medical professional who specialises in skin) was a welcome sign that someone was taking their eczema ‘seriously’. Cat said seeing a dermatologist felt like “a big step up”. Not everyone we talked to had seen a dermatologist – sometimes they were happy with seeing GPs or using shop-bought products, other times requests for a referral had been refused by GPs.
The belief that GPs are reluctant to refer to dermatologists was widespread. Some people found that their GPs wanted to keep trying different treatments. Those unhappy with this arrangement sometimes found it could be difficult to persuade their GP otherwise. Aisha said she has been “pushy” but ultimately doctors are in the “position of authority”. An exception is Cat who has found it easy to get dermatology referrals – once in her university city and a second time when she moved for work.
There’s often a few weeks wait before a dermatology referral ‘comes through’. George had forgotten about the referral until a reminder letter came in the post. Some people opted to see a dermatologist privately (not on the NHS, so they had to pay for the appointments) to avoid the wait. Jessica saw a private dermatologist out of “frustration” with her vulval eczema.
Laura says it’s repetitive seeing GPs about her eczema and moving a lot (such as between home and university) makes it harder to get a dermatology referral.
Laura says it’s repetitive seeing GPs about her eczema and moving a lot (such as between home and university) makes it harder to get a dermatology referral.
Age at interview: 22
Sex: Female
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And remembering to go to the doctor, get checked up and I think, unfortunately, the doctors, GPs aren't always as like don’t know as much about it as you'd like because they often say things and you're like, "Yeh I know I've had it for all my life [laughs] I know all that, you're telling me the same thing over and over." And they're also, because they can give you things like steroids and moisturising creams and sort of send you on their way and say, "Come back to us in a few months." So they don’t refer you straight away if you know what I mean.
Which is sometimes you're like, "Can you just refer me because I've done this appointment like hundreds of times. I know what's going to happen; I'm going to come back and then you're going to give me more creams and then I'm going to go away."
And then when they do refer you it takes a while and, you know, your life when, especially as a young person you're often like flitting about, going to different houses, different areas, so keeping up with the same GP is difficult. And so they don’t really follow your story and it is like when you have a skin condition – it is like a story, it's not like, 'Here's some antibiotics, it will go in three days,' or, you know things like that. So you kind of need one professional or, you know a few sort of a regular, someone who knows what's happening.
Seeing a dermatologist was a “turning point” in terms of information and treatment for Aman.
Seeing a dermatologist was a “turning point” in terms of information and treatment for Aman.
Age at interview: 23
Sex: Male
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And one thing I found especially was with the GPs they’re not always as knowledgeable as you think they are. So, growing up, you just kind of take it as a given that your GP knows everything about every condition. And then, kind of come 14, 15 you start realising well, they’re just prescribing me the same thing over and over again and seemingly expecting a different response. So, if I was going to give any advice that I’d say, go and talk to a dermatologist, because they’ll know exactly what your skin needs and the different types of eczema and will have different types of treatment for it. Whereas, a doctor might only recommend hydrocortisone or one specific treatment. And, so the times when I’ve been to a dermatologist they’ve really kind of [laughs] I’ve said, “Well you know, the doctor told me to use this,” and they’ve basically turned around and said, “Well, you know, that’s not really going to affect it because you’ve got this type of eczema” or “It’s a bit too bad for that kind of cream. It’s not really gonna have an effect”.
Aisha was pleased to see a dermatologist after years of asking, but feels she was discharged too soon.
Aisha was pleased to see a dermatologist after years of asking, but feels she was discharged too soon.
Age at interview: 21
Sex: Female
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Personally, I don’t think doctors really know how to treat it, if that makes sense. Sort of your normal GPs – I don’t think they really do cos it's, I don’t know how common eczema is. I mean, I guess people do sort of suffer from the odd occasion of dry skin and maybe like a flare up here and there. But, I think for people who have it chronically, I don’t think they know what to do. I think that’s why it took so long for me to be seen by a dermatologist.
But when you do go to a dermatologist they do understand and it's like, oh finally somebody is understanding me. But then, because they think… what happened with me and what happens with my sister is that, once sort of the eczema has gotten a little bit better, they're like, "Oh hooray, hazar. you know, it's cleared," and it's like not really, this is just perhaps a better day than most. So, you get discharged and then you have to go through the whole process again of going to your doctor and asking them and then them sort of finding- I mean that’s what I'm in, that’s the process that I'm in at the moment.
Some people had seen dermatologists specially trained to treat children with skin conditions (paediatric dermatologists). This was really helpful for Aadam who got help with keratoconjunctivitis (an eczema-related eye condition). The age at which a young patient moves from a paediatric to adult dermatologist varies. For Aadam, this was at age 16. There’s usually a ‘transition’ appointment in paediatric dermatology to check that the young person understands about managing their eczema before they become an adult dermatology patient.
Himesh is age 17 and will soon be moving from paediatric dermatology to adult dermatology. He is unsure about what to expect from this change.
Himesh is age 17 and will soon be moving from paediatric dermatology to adult dermatology. He is unsure about what to expect from this change.
Age at interview: 17
Sex: Male
Age at diagnosis: 10
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So at the moment you’re at a children’s dermatology unit, is that right?
Yeh.
And will you be moving onto an adult, adult clinic at a later date?
Yeh unfortunately I have to, they told me this last time I went, I think a month ago, ‘cos I’m coming to that age I will have to get referred to an adult clinic. But I’m not really looking forward to that because apparently there’s a huge difference because like they don't tell you what to do apparently in the adult clinic whereas in the children’s clinic I guess they go more in-depth if that makes sense. But you have to be by yourself in the adult clinic so you have to, I guess pay more attention and they’re not going to help me out as much as the children’s nurse would.
Vicky was referred by her dermatologist to a paediatric dermatology specialist but she found it a bad experience with wet-wrapping.
Vicky was referred by her dermatologist to a paediatric dermatology specialist but she found it a bad experience with wet-wrapping.
Age at interview: 19
Sex: Female
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It was my dermatologist referral, he said cos where it was, my eczema was extreme. He said that we were sort of at a loss of what to do so he referred me to there to say, is there anything you can recommend and they, they agreed to see me. So I remember like my parents made a day out if it, we went up to [city of hospital] and that. And we got there and they literally looked at me and they spoke a little bit about that medication that was on trial that they’d only tried on boys my mum said no to that and then they said, “Well all we can do is wet wrap her then.” So they just wet wrapped me, literally from neck to ankle. And I was just crying and screaming cos where they’d put it all across my chest as well, so I felt like I couldn’t breath, I had panic attacks, it was horrible. I got on, got outside the hospital and ripped it all off and I remember thinking that ‘oh, that hospital is crap’.
Another kind of referral is for mental health and self-esteem support, as eczema can be difficult to cope with emotionally and psychologically. Most people hadn’t talked much with their doctors about emotional impacts or been offered formal support, such as counselling. Some brought up the topic themselves with their doctors. The reaction from their doctors was not always seen as appropriate though, such as being instantly offered anti-depressants. Support for damaged confidence can also be important even after eczema clears up as there may be visible scars left and low self-esteem may remain.
Aman says the doctors he saw whilst at university were more aware of the distress related to eczema than previous doctors.
Aman says the doctors he saw whilst at university were more aware of the distress related to eczema than previous doctors.
Age at interview: 23
Sex: Male
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Have any of your doctors whether it’s GPs or dermatologist ever talked to you about sort of the emotional and psychological impact eczema could have?
As I was growing up, not too much. In university and stuff like that, yes, a lot more, because you’re at a bit more of a fragile time I think. ‘Cos you, you move away from your parents and you don’t you have that, you don’t have that same support network that you would at home. So, they’ve only talked about the times where I’ve gone in at a flare up stage in the middle of exams thinking, oh god, you know, this is just the worst thing ever. And, yeah, having that kind of calming down moment where y’know, they say it’s not really the end of the world, even if you fail your exams, what was more important is, is your own health. And so that kind of puts it in perspective and I wouldn't necessarily say that doctors speak or think about that as much as they could do.
Aisha struggled with scars from her eczema. Her doctor told her about ‘skin camouflage’, a service previously run by the Red Cross and now by the charity Changing Faces and some dermatology departments.
Aisha struggled with scars from her eczema. Her doctor told her about ‘skin camouflage’, a service previously run by the Red Cross and now by the charity Changing Faces and some dermatology departments.
Age at interview: 21
Sex: Female
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And so I went to the doctor I think when I was about 14 and the doctor sort of said, "OK well there's this thing called sort of coverage make-up that the Red Cross do and we could go and sort of get that sorted for you if you like?" And I thought, 'Yeh that’d be good,' because it's sort of used for like burn victims and just people who have really heavy scars, like wine marks and etc etc. So, me and my mum and my sisters, we went down to [town name] and we went to the Red Cross clinic and I got it done and it was all sort of very like, like a movie sort of set with like prosthetics and everything everywhere and all these different shades of make-up. And, I put it on and I just, I'd not even put it on my, they not only put it on my face but they also put it on sort of my arms and the back of my legs, and I just looked like a completely different person, it was just, it was really sort of uplifting and I was like, "Wow this means sort of…" It just made me feel that tiny bit more confident even though, having eczema for years, obviously sort of knocked me down internally but, just at least I didn’t sort of show it on the outside.
The emotional side of having eczema is something that Katie-Lauren would like healthcare professionals to be more aware of.
The emotional side of having eczema is something that Katie-Lauren would like healthcare professionals to be more aware of.
Age at interview: 19
Sex: Female
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I think sometimes the doctors are just focused on like maintaining it, so managing it rather than finding a way to overcome it. And I don’t really think that they think about how you feel about having eczema. I mean, I know they’re not like psychologists or anything, but they’re your doctor. They should make you feel better, emotionally as well as like physically. So I think if someone keeps going back for eczema they should ask you how it affects your life, because people might not be so willing to volunteer that information.
Yeah.
Especially when you go see a doctor, because you feel a bit nervous sometimes. Like there’s so many times I’ve been to the doctor, I’ve been like ‘right, I need to say this to them’. But it’s just gone so quickly that I’ve like left with my prescription and I’m just like, ‘I should have said something’, but they don’t, they don’t, they see you as a patient sometimes and not just as a person.
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