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
painful. The amount of eczema a person has doesn’t always determine how they feel about it. 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.