Messages for medical professionals treating young people with eczema

Based on their experiences of having eczema, the young people we talked to had advice to give to health professionals. Sometimes these messages also applied to others, such as their family, friends and partners, school/teachers and university/lecturers, and work colleagues. For example, many stressed that eczema can be physically and emotionally painful. The amount of eczema a person has doesn’t always determine how they feel about it.

Anissa’s doctor directed information about eczema to her parents when she was little.

Age at interview 20

Gender 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.

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Naomi explains about emotions and eczema.

Age at interview 17

Gender Female

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It’s been hard, it’s not easy; really isn’t easy to have eczema cos it’s a mixture of being physically in pain and emotionally in pain you know? You could have it severely and it not bother you in the, that much; you could have it a teeny bit and it completely destroy the way you think, the waylike your life, you might not want to leave the house cos you might have a massive scar on your face cos you’ve had eczema there or something you know. I justI reckon doctors and GPs shouldI mean a lot of them are very understanding, but they tell you the same thing; I want to hear something different that isn’t going to be, “Oh I’ll just give you thesethis cream,” and it’s like, well I don’t need anything from that, it’s just me paying for more stuff, like it probably won’t even work. They should do like trials and they give you like a free sample and try it for like a week I reckon. Cos that would bethat might be more successful than giving them medication that would flare it up without them.

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Aisha talks about what health professionals can do to help young people with eczema.

Age at interview 21

Gender Female

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I think they should know that it does affect people not just physically but mentally and sort of, yeh it definitely does affect people in just more than one realm of their life; it’s not just a skin condition. It’s not like a cut that you can put a plaster over; it’s something that needs to be addressed and, you know, looked after and stuff like that. And I would also say for them to not just shove it to the side really. Yeh, if somebody does come with you and they’ve come to you a couple of times and they’ve said to you, you know, they’ve tried lots of things and, I guess know when you think I think that point should be a kind of like, you know maybe we should get you a referral somewhere or, here let’s do this or something’, I don’t know. But, yeh get you an allergy test or something because you never know. I mean I don’t blame them; doctors obviously, they see what, so many patients in the day so, they can’t sort of keep tabs on everything but, I think if it’s a problem like that then, they really should know when to – I think just being referred should be a bit more open and a bit more easier to happen than just, you know having to be sort of severely scarred and crusty and flaky and whatnot, so yeh.

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Key messages for health professionals treating young people with eczema:

Be friendly and respectful

Give people choices – don’t automatically give a prescription for the same thing if they don’t find it’s helping or if they are struggling with side effects. Be careful not to suggest that it’s the young person’s fault that they have eczema or imply that you don’t believe they’re really using their treatments.

Take the young person’s concerns seriously

Don’t tell them they ‘just have to deal with it’ and that there’s nothing more you can offer. This is how Alice felt growing up with eczema and one of the reasons why she rarely seeks medical help with her skin. Aisha felt dismissed when her GP wouldn’t give her strong enough steroid creams for the severity of her eczema as a child. Refer for more specialist dermatology care when appropriate.

Recognise that everyone is different

This applies to triggers, how people respond to treatments and how they feel about their eczema. Lots of people wanted to find out more about their triggers. This might include talking about lifestyle aspects (diet, alcohol, smoking, sleep). Some had asked their doctors for allergy tests but been told they couldn’t have one with no further explanation.

Listen to what the person with eczema has to say and be open to talking about things they’ve read online

Jessica struggled to get doctors to believe that she had vulval eczema after reading about it online. Some of her doctors suggested other causes, even after diagnosis.

Talk to the young person as well as their parents

Vicky remembers times as a child when she was confused about what her parents and the doctor were saying. She thinks medical professionals should ‘make sure everyone that’s there [in the consultation] is involved’.

Explain about eczema causes as well as triggers

Katie-Lauren found it helpful when a GP nurse explained about the layers of the skin. Others thought doctors should explain more about links to other atopic conditions like asthma.

Explain about eczema treatment options

This includes the importance of emollients for managing eczema and the best ways to use these (including how to use them with steroid creams). Himesh thinks it’s important for doctors to talk about side effects too, such as with over-use of steroids. If a person who wants to try alternative therapies, be respectful and offer to talk with them about it.

Give people choices

About which treatments/brands of emollients (and potentially Protopic/tacrolimus ointment) to try. You may need to look up their medical notes to find out what they’ve used in the past, as the young person may not remember details if they’ve had eczema for a long time. Naomi thinks it would be good if GPs had samples of emollients to try (as some dermatologists have).

Prescribe suitable quantities of treatments

Like emollients and steroid creams and/or repeat prescriptions for these. Going back to see a GP solely to be prescribed a treatment that is working well is time-consuming and can be expensive (with travel to the appointment and, for some, prescription charges).

Stay up-to-date with research and information about eczema

Which you can share with the young person. Many people felt their GPs didn’t know much about eczema and it can be upsetting to feel ‘stuck’ in a cycle of being given one prescription after another for emollients or steroid creams that aren’t working. Cat liked that her dermatologists did their own research as well as treat people with eczema.

Be aware that the emotional and social impacts on young people with eczema can be enormous, including suicidal feelings

Let people know it’s okay to talk about emotional distress and that there is support (like counselling) available. Ask the young person about how eczema affects them – physically but also emotionally and in their daily lives. Georgia has completed forms about the emotional impacts of eczema at her dermatology appointments but says the results are never discussed with her. However, be sensitive when asking about eczema as it may make the person feel more self-conscious if a comment comes out of the blue.

Hazel stresses that doctors should be careful with their questions and comments about eczema.

Age at interview 21

Gender Female

Age at diagnosis 3

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Judging like whether it’s OK to ask like sensitive questions. Don’t make judgements about how you think someone might look because they might not have noticed it or they might not want to talk about that. And, yeah, judging whether it’s appropriate to ask them how they feel as well, because if it’s something that they definitely don’t ever want to talk about, don’t ask them that. But they’ll only tell you it’s a difficult one but, especially if it’s something that you can definitely see, just being really careful about what you say and how you phrase it. Don’t ever sort of point it out as You’ve got a huge patch of eczema on your face. Sort of be like, “Is there anything else?” if they’ve come in talking about something else. So, if they’ve come, “Oh I’ve got eczema on my foot,” and you say, “I can see it’s all over your arm,” that’s not great. But, yeah, just being I guess tactful and sensitive cos it is sensitive.

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Georgia has researched online about topical steroid withdrawal. She’d like to explore other treatment routes with her dermatologist.

Age at interview 20

Gender Female

Age at diagnosis 4

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One thing I’ve come across recently is topical steroid withdrawal and addiction. When I’ve been using, when it got quite severe and I was referred back to my dermatologist, I was put on courses of prednisolone and Trimovate and I’ve had Protopic and Betnovate. Which are all, Protopic isn’t a steroid but they’re quite, the Betnovate and the Trimovate I think are quite potent. And I wanted to stay away from that because, as I mentioned earlier, I like naturally occurring products, something that’s not gonna have serious side effects on my skin. Which, what I’ve been reading up on is skin thinning, it becomes red and it can deteriorate. And it wasn’t really something I’d wanted to, I didn’t wanna go down that route because my skin is already quite red anyway. And I think it, it’s a bit harsh. But after talking with my dermatologist, who wasn’t too happy for me to go down the route without steroids I think. Because it has such a, it does have a really high success rate. I won’t, I won’t deny that. They’ve been using them for 50 years or so and they are really successful with people that have severe eczema. But after reading up on topical steroid addiction and withdrawal, some of the symptoms, such as regularly infected skin, it’s constantly swollen, red. There’s like a scent of iron actually that I noticed on my skin, which is quite odd. And reading up on some of these people who do suffer with it and are going through the withdrawal of it. It’s, it’s quite severe what they go through. Even though s-, steroids are such an easy route to go down. They, you just put it on for about three weeks or so and use it intermittently, and your eczema is gone. But these people are trying to sort of push the toxins and steroids out of their body, and have been for about two or three years. And they’re still going through symptoms of s-, swollen skin, it’s red, it’s cracked, it’s infected all the time. And I don’t think mine is as severe as theirs, possibly because mine is more stress related and my allergies aren’t as bad as theirs. But it is still a route I would like to explore. And I think I would really appreciate it if it was an option that doctors and dermatologists were more prepared to explore. Rather than accepting that the only route is sort of scientific research instead of going down the herbal route. And sort of just allowing a bit more preference from the patient, not necessarily what they’ve found to be successful in the past.

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