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National Eczema Society

John Montgomery5 min read

National Eczema Society

The National Eczema Society (NES) is a UK charity (registered charity 1009671, England and Wales, and also registered in Scotland) for people with eczema and their carers. It was founded in 1975 after Christine Orton wrote to The Guardian about her child’s eczema, proposing “we should form a society for sufferers and their relatives”. Hundreds of readers wrote in support (Wikipedia; local-authority directory listings). It is funded by public and company donations and by membership. It is run by a small staff team that includes a dermatology nurse specialist, led since 2018 by Chief Executive Andrew Proctor, and governed by volunteer trustees (eczema.org, accessed 2026). Its Medical Advisory Board is chaired by consultant dermatologist Professor Carsten Flohr. The charity’s website now also uses the name “Eczema UK” (eczema.org, 2026); this vault keeps “National Eczema Society”, the name used on its factsheets and on the 2024 statement. Its US counterpart is the National Eczema Association.

National Eczema Society [relates] National Eczema Association National Eczema Society [relates] British Association of Dermatologists

Factsheets and helpline. The NES’s nurse-supported Helpline is its “first point of contact for anyone affected by eczema”, giving guidance on management and treatment (Wolverhampton Information Network listing; St John’s DermAcademy). Its factsheets are a Track B patient source written to be consistent with NICE and NICE CG57. This vault draws on them for:

Some of its practical advice goes beyond trial evidence, for example on silk clothing and mite measures. The vault logs those as conflicts in the relevant notes.

Conflict: [National Eczema Society factsheet, reviewed Nov 2023] states that Elidel (Pimecrolimus) is licensed in the UK from 3 months. [NICE TA82/CG57, 2004] refers to children aged 2 and over. Already logged in NICE CG57 / Pimecrolimus — unresolved; see open_questions.

National Eczema Society [supports] Emollient Therapy National Eczema Society [relates] Clothing and Fabrics National Eczema Society [relates] House Dust Mites National Eczema Society [supports] Pimecrolimus

Topical steroid withdrawal statements. In January 2021 the NES and the British Association of Dermatologists issued a position statement on Topical Steroid Withdrawal (TSW). It was replaced in February 2024 by a joint statement from the NES, the British Dermatological Nursing Group and the BAD. That statement acknowledges TSW, also called red skin syndrome or topical steroid addiction, but notes that there is no clear medical definition and very little research. It lists conditions that can mimic TSW: eczema relapse, rebound erythema, steroid rosacea and perioral dermatitis, infection, contact allergy, erythroderma and adrenal suppression. Its central message is that concerns about TSW should not put people off topical steroids when they help, and that alternatives should be offered to people who would otherwise stop (NES/BDNG/BAD 2024). The MHRA directs prescribers to it. In 2024/25 the NES ran its first research grant round. Two of the four funded projects study TSW: a University of Nottingham PhD on how TSW is discussed in consultations, and Edinburgh pump-priming work on its scale and molecular mechanisms (Wikipedia, citing NES 2025).

National Eczema Society [relates] Topical Steroid Withdrawal National Eczema Society [opposes] Steroid Phobia MHRA [supports] National Eczema Society National Eczema Society [funds] Topical Steroid Withdrawal

Research and policy role. The NES is a registered patient/carer stakeholder in NICE technology appraisals, for example lebrikizumab and nemolizumab. It supports UK trials and studies including the RAPID Eczema Trials programme, Kids in Control (child self-management), the SLEEP study and TRANS-FOODS, which looks at peanut sensitisation through eczematous skin in babies (Wikipedia). For parents of toddlers, the charity is the main UK lay voice between NHS guidance and online communities. Its TSW stance places it firmly in Track B, while acknowledging the experiences that drive parents toward Track A.

National Eczema Society [relates] NICE National Eczema Society [relates] Peanut Oil Sensitisation

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