Help Shape the Future of Eczema Care: We’re Looking for New Trustees!
Are you passionate about making a real difference in the lives of the millions of people in the UK living with eczema? We’re looking for new Trustees to join our Board and help us shape a better future for everyone affected by this condition.
This is a fantastic opportunity to use your skills and experience to guide our strategy, strengthen our voice, and improve the support we provide. As a Trustee, you’ll play a vital role in helping us achieve our mission.
We’re particularly interested in hearing from individuals with professional expertise in income generation, health policy, or legal/HR. If you have skills in one of these areas and are ready to use them for a great cause, we’d love to hear from you.
If you are a passionate, strategic leader, consider joining our team and helping us make a lasting impact.
Thanks to your support, clearer topical steroid strength labelling is here.
Until now, steroid creams and ointments used in the UK didn’t clearly show their strength on the tube or box. Some showed the percentage of active ingredient, but that’s not the same as strength.
We conducted an online survey in December 2022, to find out more about people’s knowledge and understanding of steroid potency. We received 943 responses, from both adults with eczema and parents of children with eczema.
Your input showed how confusing the old system was and why clearer strength labelling was essential. 98% of respondents knew steroid creams and ointments come in different strengths. However, almost half said they didn’t know how many different strengths there were, and only 17% correctly answered ‘4’. 95% of respondents said they would like to see clear strength labelling on all steroid creams and ointments.
A report on the findings from this survey, and a further survey we conducted in Jan-Feb 2023 investigating awareness of specific topical steroid products, was published in the Clinical and Experimental Dermatology Journal. The research highlighted a worrying lack of understanding of steroid potency among patients. 1 in 5 respondents underestimated the potency of their topical steroid and almost a quarter overestimated this.
National Eczema Society gathered and led a coalition of medical organisations and charities, calling on the UK medicines regulator, the MHRA, to introduce consistent and clear potency labelling on topical steroid (TCS) tubes, packaging and patient information leaflets. We argued strength labelling is needed to support people to use steroid creams and ointments confidently and safely to treat eczema flare-ups.
Our Chief Executive Andrew Proctor attended meetings at the MHRA to push for this change. Healthcare professionals from dermatology advocated for implementation too. We recommended the MHRA use the words ‘mild steroid’, ‘moderate steroid’, ‘strong steroid’ or ‘very strong steroid’ on the labels, rather than saying ‘potency’ which not everyone understands.
The MHRA was reviewing its advice on topical steroid withdrawal (TSW) around the time it was considering changes to topical steroid strength labelling. We contributed to the TSW advice review as well.
We did it! They announced the introduction of clearer strength labelling of steroid creams and ointments in May 2024, in a routine update to MHRA stakeholders called a Drug Safety Update. The MHRA also highlighted its updated TSW advice at the same time. All topical steroid products should now clearly show strength levels on the packaging, tube and patient leaflet.
When announcing the change back in May 2024, the MHRA confirmed:
“Over the coming year, topical steroids will be labelled with their potencies to aid correct selection and to simplify the advice to patients requiring multiple steroid products of differing potencies. These will be labelled ‘mild steroid’, ‘moderate steroid’, ‘strong steroid’, and ‘very strong steroid’.”
Reflecting their announcement, the MHRA gave manufacturers 12 months to implement the new strength labelling, starting from late May 2024. Our community can now expect to see strength labelling on the packaging and tube of steroid creams and ointments, and this is also explained in the accompanying patient information leaflet.
What this means for you:
- Easier to understand the treatment you’ve been prescribed
- Clearer conversations with your doctor or other healthcare professionals
- More confident, informed decision-making using topical steroids, which so many in our community rely on to treat eczema flare-ups
This change is for you, our wonderful eczema community.
Thank you for your support. It took us three years to build the evidence and campaign for this important change and we did it! We believe this is a huge step forward in supporting people to use these medicines safely and effectively. And we think it’s a world first too!
Let us know if you’ve spotted the new labels on your steroid creams and ointments, we’d love to see photos of the strength labelling, too!
The National Eczema Society team was in Glasgow early July for the British Association of Dermatologists’ 105th Annual Meeting. As the UK charity dedicated to eczema, we’re here to make sure the condition is taken seriously, listened to, and properly understood by those shaping dermatology care.
From our patient support information stand, we were able to share updates with dermatologists on the research we’re funding, our campaign for clearer steroid labelling, and the trusted information we provide to help patients and healthcare professionals alike.
We’re proud to be the voice for eczema patients, because eczema deserves more attention, more understanding and much better support. Attending events like this gives us an opportunity to network and learning from other skin charities too.
We also get to hear about the latest research and developments. The conference programme covers all skin conditions and it was good see to see many sessions on eczema. Topics varied from henna tattoos and contact allergy, to wearable devices for self-management, to prescribing of emollients for older people with eczema. It was great to see so many presentations on the newer systemic treatments for more severe eczema, and hear reassuring updates from the A-STAR research study that is tracking the safety and effectiveness of these newer treatments.
It was really exciting to hear how researchers are now exploring how treatments can change how eczema progresses (so called ‘’disease modification’), to prevent future symptoms. Dr Paula Beattie gave an excellent talk on the importance of fully considering people’s other health issues when treating moderate to severe eczema. The use of Artificial Intelligence (AI) in dermatology care was a hot topic this year, and good to see talks on hyperpigmentation in skin of colour, the mental health impacts of skin conditions, and topics like photosensitive atopic dermatitis that don’t usually get a lot of attention.
It was also very encouraging to have two sessions on topical steroid withdrawal (TSW), focusing especially on communication and TSW. These were well attended by the dermatology community and a sign awareness is growing.
Huge thanks to Dr Alia Ahmed and Dr Maria-Angeliki Gkini for their clear, compassionate advice on how clinicians can better support patients experiencing TSW. Our key takeaways were:
– Patients often feel dismissed or distressed in clinical settings
– The mental health impact is not well recognised
– Validating patients’ experiences matters, even when views differ
– More research is urgently needed!
National Eczema Society is proud to fund in this space and look forward to guidance on TSW from the British Association of Dermatologists soon.
We were proud to recently host the National Eczema Society’s Annual Medical Advisory Board (MAB) meeting, an important opportunity to bring together expert voices from across dermatology to guide our work.
Since its founding in 2021, the MAB has played a vital role in shaping our organisational strategy, research priorities, and campaigning, and we’re deeply grateful for the continued insight and commitment of its members.
This year’s meeting was an energising and collaborative session, allowing us to:
- Share updates on the eczema research projects we’re funding through our growing grants programme
- Explore emerging developments in the medical and research landscape
- Reflect on the reach and impact of the trusted health information we provide for people living with eczema
We’re also marking an important moment in the MAB’s leadership. After four years as inaugural Chair, Professor Celia Moss OBE is stepping down from the role, we’re delighted she will remain on the Board as an active member. Celia has helped to shape the MAB from the start, ensuring it reflects the needs of both clinicians and the eczema community. We are incredibly grateful for her guidance, experience and unwavering support.
We’re equally pleased to announce that Professor Carsten Flohr will now take on the role of Chair. A leading figure in eczema research and clinical care, Carsten is currently in the second year of his second three-year term on the MAB. He brings extensive academic and strategic leadership, and as head of a severe eczema clinic, he sees first-hand how devastating this condition can be.
We are hugely thankful to Professor Flohr for stepping into this important role and for the expertise he continues to share with the Society.
We’re delighted to share that we will be funding four ground-breaking eczema and TSW research projects in our first-ever grant round!
This is a milestone moment for the Society, in our 50th year.
Meet the researchers:
PhD Studentship Award – The Christine Orton Memorial Award
Talk TSW – Talking about Topical Steroid Withdrawal in Healthcare Consultations
Researchers including Dr Paul Leighton, Dr Laura Howells, and Dr Lydia Tutt at the University of Nottingham, are exploring how people with eczema and healthcare professionals talk about topical steroid withdrawal (TSW).
Together they want to create a tool that helps support better conversations and improve care for those impacted by TSW.
“This is an incredibly exciting new chapter for the National Eczema Society as we begin directly funding research for the first time”, said Andrew Proctor, chief executive of National Eczema Society.
“We are especially proud to honour our founder, Christine Orton, by naming our first PhD studentship after her — a fitting tribute to her visionary work and lifelong dedication to improving the lives of people with eczema.“
PhD Studentship Award
Evaluating Effects of Sunlight and Other Environmental Exposures in Atopic Dermatitis
Researchers led by Dr Kirsty Rutter and Dr Zenas Yiu at the University of Manchester, are exploring how sunlight and other environmental factors impact eczema symptoms. They are also investigating whether wearable UV sensors and data tools can help people manage their eczema more effectively.
Pump-Priming Award
The Lived Experiences of Women with Atopic Dermatitis – Natural Language Processing (LEAD NLP)
Professor Carsten Flohr and his team at King’s College London are using AI and interviews to understand better the challenges women with eczema face – especially during pregnancy. Their research aims to improve care and guide better support for healthcare professionals.
Pump-Priming Award
Scratching the Surface: Investigating the Scale and Molecular Mechanisms of Topical Steroid Withdrawal
Dr Alice Burleigh and Professor Sara Brown, at the University of Edinburgh, are investigating how topical steroid withdrawal (TSW) develops. Their research could lead to better ways of diagnosing and treating TSW in the future.
It is National Eczema Society’s aim that our research grant round becomes an annual award.
Explore information on future funding opportunities.
On this International Nurses Day, we want to extend our heartfelt thanks and appreciation to Julie Van Onselen, our esteemed Dermatology Nurse Advisor, who has been a vital part of the NES community for over 25 years.
Julie’s dedication, expertise, and passion have made an immeasurable impact on our work and the lives of those we support. Most recently, she has led our Exploring Eczema series with insight and compassion, sharing her knowledge in ways that truly empower and educate. Her regular contributions to our members-only magazine, Exchange, continue to inform and inspire, and her guidance as a member of our Medical Advisory Board helps to shape our approach and priorities.
Julie exemplifies the very best of nursing, skilled, empathetic, collaborative, and driven by a genuine desire to improve care. We are incredibly lucky to have her as part of our team, and we thank her deeply for her tireless work and longstanding commitment to NES.
Thank you, Julie, for everything you do.