The Lichen Sclerosus Guide has won a category in the 2025 Picker Experience Network Awards (PEN Awards). The team was awarded first place in the ‘Communicating Effectively with Patients and Families’ category. The guide has been written by both people with vulval LS and expert healthcare professionals and researchers from the University of Bristol, University of Nottingham, East Lancashire Hospitals NHS Trust, and Nottingham University Hospitals NHS Trust.
LS is a skin condition that can affect anyone at any age, but it most commonly affects women. Although it can appear anywhere, it mainly affects the genitals, and in women or those assigned female at birth, this is known as vulval lichen sclerosus. However, awareness and knowledge about it is often limited even amongst healthcare professionals.
The online guide contains information about symptoms, diagnosis, treatment, and support, and includes videos explaining what happens to the skin in LS, vulval anatomy and self-examination, and how to apply treatment to the vulva.
The online resource which is linked to the NHS Conditions A to Z website and has been integrated into ‘Advice and Guidance’ templates for primary and secondary care, also includes a treatment template plan which is being widely used in NHS clinics.
The Picker judging panel praised the Lichen Sclerosus Guide for its inclusive, evidence-based approach to tackling stigma and improving health literacy. They commented that: “It empowers patients, supports clinicians and bridges gaps in care, making it a model for effective communication and partnership in healthcare.”
Dr Sophie Rees, Research Fellow in Qualitative Research in Bristol Medical School: Population Health Sciences (PHS) and one of the online guide’s authors, said: “We’re delighted to have received this award. The LS Guide tackles a poorly understood and stigmatised condition and empowers patients with the information they need to self-manage their condition.
“Over 80% of people responding to feedback about the online resource say they feel more confident managing their condition because of the LS guide. It’s great that the guide has recently been added to the NHS website on the lichen sclerosus page.”
Dr Caroline Owen, Consultant Dermatologist at East Lancashire Hospitals NHS Trust, and one of the online guide’s authors, added: “Vulval lichen sclerosus can be really isolating as people often feel embarrassed to disclose or talk about their symptoms with family and friends. We have had great feedback from patients who tell us that they have found the guide supportive and reassuring and it is wonderful that it has been recognised in this way.
“We included a treatment template plan that both doctors and patients can download and complete, as well as a video demonstrating the proper application of topical treatments. These have been particularly helpful as there can be confusion and anxiety about the use of topical steroids, which are crucial for effectively treating and managing this condition.”
The research team are now studying the impact of vulval LS on children and young people with the condition, and their parents or caregivers.
Dr Rees said: "it's too soon in our study to say what is required, but we hope to be able to find out what children with this condition need so that the Lichen Sclerosus Guide can support them too."
The Lichen Sclerosus Guide is a co-produced, comprehensive, freely available web-based resource to support patients with vulval LS. It includes written and video information, and downloadable resources.