Some young people were happy with the help they received from GPs and dermatologists, but many had advice they wanted to share with medical professionals treating young people with alopecia. Key messages were:
- be aware of the emotional and social impacts alopecia can have, including that seeing doctors can add to distress;
Many of those affected felt that alopecia wasn’t always taken seriously by medical professionals, even though it can have a big emotional impact. As Elizabeth explained, it’s not just the visible hair loss but also the “invisible stuff” of the emotional and social effects. Many people talked about the way alopecia had affected their confidence and self-esteem as well as experiences of bullying. Often, they didn’t feel their doctors really understood this. Some talked about times when seeing a doctor about alopecia had actually caused more upset and made them feel worse by making comments or ushering them out of the appointment too quickly.
- give young people time in appointments to make sense of their diagnosis of alopecia and ask questions about it;
Be aware that people may have waited a long time for the first appointment about hair loss and could be frightened about what their symptoms mean. Krista thinks it’s important people with alopecia areata are given more time in appointments to think and talk about the condition. Her advice to doctors is “don’t just turn them away from your office and say ‘it might get better, it might get worse’.”
- provide information about alopecia to those who want it;
Young people wanted different types and amounts of information. The main things people wanted to know were about alopecia causes and triggers, treatment options and what the future might hold. Hearing that there are no certain answers can be difficult. Beth found that her dermatologists explained things well, but it could still be a lot to take in. Some people talked about wanting more input with treatment decisions, but others felt they had been left with all the responsibility to look into options. Many people wanted their doctors to give them information about side effects and risks of treatments as well as being realistic about the chances of success. Becky feels she and her mum had to do this for themselves after treatment options were listed without detail. Many people wanted information about wigs, including how NHS entitlement processes works. Laurel feels the option of wigs should have been raised with her sooner.
- offer emotional support as well as medical treatment options;
Emma thinks it’s important doctors discuss different types of psychological support and avoid “jumping to offering somebody antidepressants for when you’re feeling low”. She suggests counselling as one option as well as signposting to alopecia support groups. It was helpful for many people to find out from their doctors that there are support groups online and meetings all over the country where they could talk to others with alopecia. However, some people cautioned that online information and support isn’t a replacement for what doctors can or should offer.