Fund research for a cure, support and to raise awareness of Lichen Sclerosus

Fund research for a cure for Lichen Sclerosus as currently is no cure for this painful debilitating skin condition. The Government should also increase funding to improve awareness and treatment of this condition.

There is currently no cure for Lichen Sclerosus only strong steroid ointments which put condition into remission at best. There is some evidence to suggest it may be an auto immune disorder. It mainly affects women but can affect men and children. Sufferers can live in pain and be affected physically and mentally, but it can be misdiagnosed due to lack of awareness and can increase the risk of certain cancers.

The government is committed to supporting all those living with dermatology conditions including Lichen Sclerosus (LS).

The Government funds research on LS through UK Research and Innovation (UKRI) and the National Institute for Health and Care Research (NIHR).

The usual practice of NIHR and UKRI is not to ring-fence funds for expenditure on particular topics. Research proposals in all areas compete for the funding available. NIHR and UKRI welcomes funding applications for research into any aspect of human health including LS. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.

The Government acknowledges the difficulties which people diagnosed with LS face when living with such a debilitating skin condition.

With regards to research on LS, the NIHR and UKRI have commissioned research which seeks to benefit people living with the condition. For example, the NIHR has funded the PEARLS study which looks at treatments for LS flares. The study will test proactive versus reactive therapy for the prevention of LS exacerbation and progression of the disease by using steroid flare creams twice a week. It is a full randomised controlled trial and trial recruitment began in March 2023.

UKRI have funded a study which explores what it is like to have vulval LS, how people usually access diagnosis and care, and how it affects their quality of life. The study explores the views of women with LS of issues related to future clinical trials on the topic.

We know that there are research gaps on how conditions manifest and are experienced differently by men and women, and between different groups of women. The NIHR therefore continues to explore ways to address the lack of research into women’s health conditions, improve the representation of women of all demographics in research, plug the data gap and ensure existing data is broken down by sex.

Most adult and paediatric dermatology services are commissioned locally through Integrated Care Boards. However, to support patients with more complex or severe conditions, NHS England directly commissions some specialised services, for example specialised adult and child dermatology clinics.

Pharmacies continue to be the first port of call for many skin and rash issues and pharmacists can offer clinical advice and over-the-counter medicines where appropriate. If symptoms suggest it is something more serious, pharmacists can recommend that the patient see a general practitioner, nurse or other healthcare professional.

The NHS is transforming dermatology outpatient services to ensure that patients have better access to specialist care that works for them and that they are seen by the right person, in the right place, first time. The transformation focuses on a personalised approach for patients waiting for outpatient appointments, improving waiting times and offering choice for patients at the point of referral.

The NHS has launched a rapid access teledermatology advice and guidance service for general practitioners and is implementing technology such as digital imaging. A teledermatology roadmap is also available to integrated care systems to provide recommendations on optimising teledermatology triage and specialist advice.

Department of Health and Social Care