For those who had medical professional help with alopecia, the main sources were:
- General Practice doctors (GPs) and nurses
- Dermatology consultants (skin specialists) and nurses (healthcare professionals specialising in skin)
Most people had seen both GPs and dermatologists about their alopecia. Usually people saw a GP first and not everyone had seen a dermatologist. Kayla grew up in New Zealand and hasn’t seen a doctor in the UK about alopecia as she was diagnosed when young and didn’t find treatments helped.
The difference between GPs and dermatologists was important to some people. They saw dermatologists as having more knowledge about alopecia and able to give a wider range of treatments, including steroid injections. Another important difference for some is that dermatologists can prescribe wigs whereas GPs cannot. Grace thinks GPs should refer onto dermatology clinics and ideally those specialising in alopecia as soon as possible. Arti says she had “issues with my [GP] doctor in terms of them taking it seriously” and referring her onto a dermatologist. Pharmacists had sometimes advised on over-the-counter treatments which can be bought without a doctor’s prescription, such as minoxidil.
Young people visited medical professionals for a range of things, including:
- getting a diagnosis of alopecia and information about subtypes
- to check if there are any other health conditions underlying the hair loss
- to find out about triggers
- to get treatments such as steroids in topical, tablet or injection form
- check-ups, including to see if treatments were working or about side effects
- for referrals which a GP can make so that a person can see a dermatologist
- for those who want to wear a wig, dermatologists can give prescriptions for wigs
- advice and treatment for complications associated with wearing a wig (for example, Kayla’s scalp sometimes gets sore and weeps from wearing wigs so her doctor gave her a solution to help dry out her scalp)
- mental health help for dealing with the emotional and psychological side of alopecia
- information about alternative and complementary therapies
- a ‘fit note’ (or a ‘sick note’) for time off or other special arrangements with work, school or university
Some people stopped seeing medical professionals after their diagnosis or after trying a couple of treatments without success. Some felt alopecia wasn’t something that doctors could do much about. Kayla says that alopecia is “not that medical” and, for this reason, Annie X feels “It’s not the doctors’ fault if they can’t prescribe anything.” Others continued to see doctors for alopecia and you can read more about repeat appointments here.
Early medical appointments
The main thing that happened in early medical appointments with GPs was getting a diagnosis and for many, referrals onto dermatologists.
Doctors usually examined the person’s hair and skin. Arti’s dermatologist looked for exclamation mark hairs which are a sign of hair falling out. Most people said they were okay with being examined because they saw it as part of the doctor’s job. Emily was told how big her bald patch was on her scalp. Most people’s GPs made a referral for the person to see a dermatologist, but there could be a wait of several weeks or months before an appointment was available. Michael’s parents paid for him to have private medical treatment and Hannah travelled further so that she could see a dermatologist sooner. Emily was pleased that she only had to wait two days to see her dermatologist.
Some young people had tests done, such as blood tests, when they first saw doctors about alopecia. Emily’s results came back showing she had low iron levels and her GP thought this might be the cause behind her hair loss. She was given some supplements to take and although her iron levels were at a healthy level when she was next tested, her alopecia continued. Rosie had blood tests taken which came back clear. Her doctors said they were checking for serious illnesses “which opened my eyes a little bit like ‘oh, this could be worse.” Ben’s doctor ran allergy tests and thought he was intolerant to gluten but cutting it out from his diet made no difference to his alopecia.
Sometimes treatment options were mentioned at early appointments, but others found their doctors had more of a ‘wait-and-see’ approach. Emily remembers being told by her dermatologist that they would “just keep an eye on it” and no other treatment was mentioned, so she didn’t see much point in going back for more appointments. She says that she can get information about alopecia through asking others with it online “at the touch of a button instead of having to make a doctor’s appointment and then for them to possibly not know because they don’t specialise in it.”