Alopecia UK attends the 104th BAD Annual Meeting

The British Association of Dermatologists (BAD) Annual Meeting is a crucial event for dermatology professionals across all conditions and specialisms, including hair loss. CEO Sue Schilling and Trustee Lynn Wilks represented Alopecia UK, engaging with a multitude of clinicians and contributing to the discussion on alopecia treatment and support. 

The Role of Patient Support Groups like Alopecia UK 

Patient Support Groups, like Alopecia UK, play a vital role at medical conferences. We bridge the gap between healthcare professionals and our community, providing first-hand insights into experiences and needs. We aim to ensure that as many dermatologists as possible hear the patient voice, to take away learning to their clinics, in the hope that this can improve treatment pathways and influence hospital policies.  The conference also provided us an opportunity to meet with leaders in other charities that are supporting patients with dermatological conditions. 

Engaging with Clinicians the Promise and Challenge of JAK Inhibitors 

This year’s conference saw more footfall to Alopecia UK's stand than previous years and given the recent recommendation of ritlecitinib for use on the NHS, it is unsurprising that many doctors were interested in what patients are saying about JAK Inhibitors.  

Many clinicians expressed a strong desire to prescribe these treatments. However, they are currently limited by the availability of ritlecitinib in their clinic, and by processes and systems out of their direct control. This frustration highlights the need for more widespread access to innovative treatments that can significantly improve the lives of those with alopecia, and directly links to our work to advocate within the NHS for fairer treatment for those that need it. 

We offered all of the doctors who visited our stand the opportunity to have some Alopecia UK materials sent to them, and 19 clinics now have a new batch of materials, whilst many more doctors prefer to signpost to our website. 

Wig Provision Concerns 

Wig provision was another critical topic of discussion. The reduction in NHS wig provision is an ever-growing concern, affecting many patients who rely on wigs for their self-esteem and daily functioning. Sue and Lynn emphasised the importance of consistent and accessible wig provision across the NHS, in line with the Charter for Best Practice for NHS Wig Provision. Sadly they repeatedly heard from clinicians that it is becoming harder to prescribe wigs in many NHS Trusts across the UK. 

Dr. Marianne de Brito's presentation on wig provision 

We met Dr. Marianne de Brito two years ago at the 2022 BAD conference when we were talking about the Charter for Best Practice for NHS Wig Provision.  She was curious about the challenges from a doctor’s perspective.  Marianne investigated wig provision across non-private patients in the UK via an online survey. Overall, for non-private patients with severe alopecia, most doctors reported that wig provision would be straightforward (52%), but a large minority reported variable difficulty, due to patient or other factors (33%), and 5% reported it would be impossible. The remaining 10% did not know. There were respondents from all regions of the UK. The inconsistency reported highlights the need for standardisation to ensure all patients have equal access to essential services. 

Sue said, “We are grateful that a short conversation 2 years ago alighted this interest and culminated in Marianne’s study. I would like to thank Marianne for taking on this project and presenting the data on behalf of Alopecia UK at the conference.” 

British Hair and Nail Society Session 

Both Sue and Lynn attended the British Hair and Nail Society meeting. The session featured an impressive line-up of speakers, two of Sue’s highlights were: 

Dr Matthew Harries spoke about the new BAD treatment guidelines for alopecia areata, as well as JAK inhibitors and future therapies for alopecia areata. It is clear that for alopecia areata there is healthy pipeline of treatments in trial at the moment.   

Dr Emma Amoafo asked “Do patients with afro-textured hair who are experiencing hair loss feel understood by their dermatologists?" Her cross-sectional study aimed to analyse patient perceptions of their dermatology experience with hair loss and caring for afro-textured hair. Emma talked about the importance of race concordance between clinicians and patients, with many respondents saying that their consultation was more beneficial when they were seen by a doctor with afro-textured hair and were disappointed when signposted to leaflets that featured hair loss in non-afro-textured hair.

And, at Alopecia UK we know we must do more to increase representation on our website.  Emma has produced a memory aid and template to support those dermatologists who do not understand afro-textured hair and says that more education is needed. She also signposted to the British Association of Dermatologists patient information leaflet (BAD PIL) ‘Caring for Afro-textured hair’ available here.

Sue also attended the GRASS-UK Steering Committee during the conference as Alopecia UK are supporting by providing expertise and access to patient viewpoints. The Global Registry of Alopecia areata disease Severity and treatment Safety- United Kingdom (GRASS-UK) is a prospective disease register designed to study the safety and effectiveness of alopecia areata (AA) treatments in “real-world” NHS practice. 

We thank the British Association of Dermatologists for inviting Alopecia UK to attend their annual meeting.