Repeat visits to medical professionals for alopecia

Most people we talked to had seen doctors (GPs and/or dermatologists) about alopecia more than once. People didn’t always see the same doctor each time, sometimes because they had moved address (such as going to university) or out of choice (if they found a doctor unhelpful). Others had only been to see GPs and dermatologists once or a couple of times at the start of their hair loss. Part of the reason why some people didn’t go back to their doctors was because they didn’t feel much could be offered to them to stop the hair loss or help regrowth. Emily was told that her hair loss would stop and regrow in a year, but in fact it continued and became more extensive.

For those who had alopecia most of their life, their parents had usually first taken them to see doctors. Meghan’s mum took her to all her appointments growing up. She says it was “nice to have her through the whole process” and provided a “stable situation”. Some people, like Annie Y, hadn’t been back to see doctors for alopecia since they were young. Danny hasn’t been back to see a doctor about alopecia after a diagnosis was made and his general health checked when he was a toddler. Those who continued seeing doctors usually went on their own as they got older, especially if they lived away from family. They often talked to their family members about what had happened at appointments though. Some people liked having another person with them at their medical consultations. Most people went to a general dermatology clinic, but some had been to ones specially run for children and young people (paediatric dermatology). A few people had been to ‘transition clinics’ run for teenagers to help bridge them between paediatric and adult dermatology.

Emilie built up trust with her dermatologist when she was little and preferred this over new doctors who she had to re-explain her experiences to.

Age at interview 18

Gender Female

Age at diagnosis 4

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I do remember seeing this one doctor and I saw him for a long time and I liked him, he was a very nice doctor, so much so that this one day I bought these ladybird stickers and I came into his office and he was talking to me and I gave him a ladybird sticker because he was important. And he stuck it, he had some bookshelves and he stuck it on the end of a shelf and I hadn’t seen him for a long period of time and I can’t remember-, it was in high school last time I saw him-, and he still had the sticker after all those years he still had the sticker up there. But he, he left now, he’s retired and ever since I’ve had all sorts of different doctors, people who don’t really know me, I have to keep re-explaining how long I’ve had it for and them constantly telling me, You do realise it’s not going to grow back, I say, Yeah, perfectly aware of that. but I remember seeing him and I remember seeing-, going to my anger management classes but that’s about it, can’t remember the in-between parts of me losing hair, it’s just very strange.

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Grace talks about her transition from paediatric- to adult- dermatology.

Age at interview 18

Gender Female

Age at diagnosis 10

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I’ve only just turned eighteen really, so I’ve only just been put into the adult dermatology clinic. So, before then I was in the children’s dermatology, and there was, I think it was less busy, or something like that cos I wasI seemed to be able to having more frequent appointments than I have been now. I don’t know whether that’s because it was less severe, so there’s kind of more hope of giving treatments and stuff like that, that could kind of see if it will induce it. So, say if I was having steroid injections, I’d have to have them every set amount of period of time; I can’t remember if it was three or six months, something like that. But I’ve been put into the adult dermatology clinic, and throughout the whole of the children’s-,when I was in the children’s department I had the same consultant, which is really, really good, so there’s good continuity throughout the whole of my treatment really.

I went to the appointment at the dermatology clinic, which is at a completely different hospital, and it was with a different consultant, and it was kind of like, I had to try and explain my story again really, because I had to kind of explain all whatthey didn’t even have what treatments I had had, or my past experience was la la la. So, I had to, yeah I had to try and explain them, and they were kind of like, “Oh yeah, there’s nothing we can really do,” and you just think there’s ‘I’ve come all this way and la la la, to try and see if there’s anything they can do. But I’ve been told that the next appointment will be with this, the same consultant I had in the children’s dermatology clinic, but it is quite disheartening because you think, ‘Surely there should be kind of some kind of protocol to kind of help people transition. Because it was a massive jump being taken from children’s to adults, cos you’re kind of thrown into the abyss with all the other adults with various skin conditions. So, it was quite difficult, but yeah I’m not on any treatments at the moment.

Did you notice any other differences when you were moved to like the adult dermatology clinics, in terms of like how the staff explained things or?

Yeah, cos obviously in the children’s derm- children’s dermatology clinic, it was all very bright and kind of colourful, and even though, obviously it’s not for me as a seven-six-seventeen year old, it almost does make the experience better because you’re kind of in this environment that’s been made comfortable for children. So, for someone who’s going there a bit kind of nervous, or what’s she going to say, what are we gonna what am I going to have done; it was very kind of nostalgic kind of calming and like, yeah basically nicer. And then to go to this this adult dermatology clinic, it was very kind of dark and gloomy, and I think it was almostit’s probably the juxtaposition of both of them together, is that they probably made the other one look darker, because the other one was so kind of bright and for children and stuff. But yeah it was kind of very much the you’re kind of in with the rest of them.

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Seeing doctors and trying treatments was an ongoing part of having alopecia for some of the people we talked to. If a young person gets on well with their doctors or nurses and feels there is progress being made with hair regrowth, frequent appointments can be reassuring. Rosie isn’t having treatments currently but likes seeing her dermatologist occasionally for a ‘check-up’ and update. Michael sees his doctor every three months for steroid injections to help his eyebrows regrow. For others, repeat visits to the doctors became tedious and gave no new information or treatment options that would be helpful. Meghan thinks going to the dermatologists at the hospital for treatments added stress in her life. Grace explains that seeing a new doctor usually involves being told “the gumpf that I’d heard a million times about the treatment, like ‘this is not really treatable.” It can be frustrating going back to the doctors and either trying treatments all the time or being told there are no treatment options to try, as well as:

  • expensive with prescriptions costs, private medical care and travel costs to appointments;
  • time-consuming and some people required time off school, university or work for appointments;
  • emotionally and physically tiring.

Some people didn’t see a doctor frequently but would go if their alopecia returned after regrowth or became more severe, for example if they had more hair loss or it started to affect new parts of their body. Others who still had alopecia didn’t go to see doctors about it anymore as they didn’t see much point in it. Elizabeth says she has “given up” with seeing doctors and trying medical treatments. Annie X prefers alternative therapies and a holistic approach with attention to diet over conventional medical treatments like steroid creams as “it felt wrong” to be “putting chemicals on your scalp.” However, as Rochelle was shocked to discover, some products sold as ‘natural’ and ‘herbal’ actually also contain steroids. Some people said they didn’t want treatments, but saw their dermatologist for NHS-entitlement wigs.

Hannah used to see a dermatologist often about her alopecia for treatments.

Age at interview 21

Gender Female

Age at diagnosis 16

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I used to see them quite regularly, cos I used to try different treatments. So I started on like steroid lotions and steroid creams and like the shampoos and everything and I did all of that. And I had odd bits of regrowth, but then it would just fall out when I stopped using them. And then I went to having injections, steroid injections and I had about, I think it was four rounds, four or five rounds of them every couple of months. But when I finished again it would just fall out again and I had seven months of regrowth when I was having injections with the steroid lotions, but like, it was like a corticosteroid lotion. But then as soon as I stopped it like three months later, I was bald again, so it didn’t really work [laughs].

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Meghan went back to her doctors recently after hearing about topical immunotherapy treatment. She had previously stopped trying treatments after deciding with her mum that light therapy after steroid injections would be too much.

Age at interview 20

Gender Female

Age at diagnosis 10

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When I went to the doctor’s last year they said there’s a, a newish age treatment called topical immunotherapy where they rub like a harsh chemical on your- on the patches and it induces like an eczema type reaction and your body fights that and I’ve heard the success rates are quite good which is what I’m in the process now of finding the hospitals that do it and that’s why I’m getting referred from the GP. But it’s-, I’m two months in now waiting to see if they’ll do it where I live or if I have to travel and if they’ll fund me and things like that, so it’s quite a long process trying to find out what hospitals do this treatment. But that’s the last thing that I have left cos there was one treatment the reason when we stopped treatment, they wanted to move me onto- I don’t even know what’s called but they made, they, they make you take this, this pill which made your skin more sensitive to UV light and your eyes and stuff so you have to wear like sun glasses and then you sit in a almost like a giant circular sunbed with the patches on show. But I at that point that was when me and my mum just like totally drew the line, like needles were enough like, like that was the stabbing enough and then moving on to something as big as that where I’d have to stay in hospital once a week I thought that was just too much.

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