We know a lot of people with eczema worry about possible side effects of using steroid creams and ointments (called ‘topical steroids’) to treat eczema flare-ups. This includes concerns about the risks of topical steroid withdrawal (TSW), which feature widely on social media.

TSW is complex and we have so much still to learn. It’s hugely frustrating there is relatively little research into the causes, symptoms and treatments. These symptoms can be extremely painful and distressing. We have more information on topical steroid withdrawal here.

One of the many challenges is that the symptoms people experience when stopping using topical steroids can appear similar to those of untreated or poorly-controlled eczema.

National Eczema Society worked with the British Association of Dermatologists in 2021 to produce a joint position statement on TSW, in response to widespread patient concerns. We believe it is important for healthcare professional organisations and patient groups to work together to find better ways of diagnosing and supporting people with TSW.

Topical steroid withdrawal – updated joint statement

We’ve collaborated again with the British Association of Dermatologists, and also this time with the British Dermatological Nursing Group, to update the statement. The revised and expanded TSW joint statement has been published today (22 February 2024). This builds on the earlier document, setting out what we know about TSW from the latest medical information available. We have summarised the research and clinical evidence and clarified the terms used. Lots of healthcare professionals contributed to the revised joint statement, including members of the Society’s Medical Advisory Board, as well as people with eczema.

Many children and adults in the eczema community rely on topical steroids to treat eczema flare-ups. It’s very important patients and carers know how to use topical steroids safely and effectively. If you are concerned about overusing topical steroids, or of stopping using these medicines, then we advise you speak to your doctor or other healthcare professional. It is also super important for healthcare professionals to take the time to explain to their patients how to use topical steroids safely and effectively.

The UK medicines regulator, the MHRA has produced guidance on topical steroid safety National Eczema Society was pleased to contribute to the review. As you can see from the webpage, there is advice on TSW for both patients and prescribers.

National Eczema Society is calling on the MHRA to introduce clearer strength labelling of topical steroids to support the safe and effective use of these medicines. This change needs to happen and is supported by patients and healthcare professional bodies.

You’re invited to a talk organised by the West Surrey and North East Hants Support Group of National Eczema Society at 2pm on Saturday 24 February 2024.

Our speaker, Dr Alpa Kanji, will be explaining how habit reversal therapy combined with topical treatments can help people with eczema break the habitual itch-scratch cycle. Dr Kanji is a dermatologist working at St John’s Institute of Dermatology in London and she teaches habit reversal therapy.

The event is being held at The Pavilion Woodbridge Road, (next to the cricket ground) in Guildford GU1 4RP. Entry is free but donations are very welcome. National Eczema Society literature will be available.

The talk is also being filmed and can be viewed online live and later on National Eczema Society’s Facebook page www.facebook.com/eczemasociety. You don’t need a Facebook account to watch the livestream.

Dr Alpa Kanji MA PhD (Cantab) MRCP CCT (Derm) is a scientist by background, having researched bacterial genetics for which she was awarded a PhD at the University of Cambridge. She completed her medical and dermatology training in London and is currently undertaking a fellowship in paediatric dermatology at St John’s Institute of Dermatology. Dr Kanji is particularly interested in atopic eczema, including the mind and skin connection, and is passionate about empowering patients to manage their skin condition as well as possible. She teaches habit reversal therapy, which encourages patients to change longstanding habits of scratching and picking their skin.

We face so many challenges living with eczema. For almost 50 years, National Eczema Society has been working tirelessly to support and champion the needs of people with eczema and their families. We still have have more work to do and we need your support!

Please donate to our Talk Eczema Christmas appeal if you can.

Eczema is complex condition, involving our genetics, immune system, environment and skin barrier. It affects each of us in different ways and there are no simple answers to managing eczema well. This also makes it hard to explain to others what it’s like to live with eczema.

We find ways of coping and getting on with life. We have no choice. The challenges of managing inflamed, painful, cracked skin and the relentless itch are ‘normal’ for too many people. We mostly face these challenges alone, or in silence, but we need to Talk Eczema to help others understand and get better medical care. National Eczema Society wants to give people with eczema a louder voice, by running campaigns and encouraging people to Talk Eczema.

Our charity relies on donations from wonderful supporters like you. Your gift, no matter how big or small, helps to create a better future for people with eczema and their families. It’s quick and easy to donate through our website here. Thank you!

Very best wishes of the season from everyone at National Eczema Society and a happy New Year!

National Eczema Society is raising awareness of the true impact of eczema during National Eczema Week this year (9-16 September 2023). Our More than “Just an Itch” campaign will highlight the debilitating nature of eczema and its profound effect on people’s lives, shining a light on the mental health impacts of eczema that are so often overlooked.

We recently conducted an online patient survey to better understand how eczema affects people’s emotional, social and personal well-being. Shockingly, 91% of respondents said their eczema made them feel self-conscious or embarrassed, and 83% were envious of those who do not have eczema. Around 4 in 5 respondents thought that eczema reduces patients’ quality of life. A big thanks to everyone who took part in the survey.

Living with eczema can be physically uncomfortable, but it also takes an emotional toll. The persistent itching, pain, and visible appearance of eczema patches can lead to feelings of self-consciousness, low self-esteem, and social anxiety. People with eczema may experience frustration, embarrassment, along with greater anxiety and depression due to the constant struggle with their skin condition – it really is More than “just an itch”.

Our campaign’s core objective is to encourage people to have open conversations about eczema and how this affects their mental health and emotional well-being. Through sharing stories of eczema patients’ experiences, resilience, and coping mechanisms, we want to help reduce the stigma associated with the condition and foster an environment of empathy and understanding.

We are producing a series of engaging videos and podcasts for the campaign, helping to raise awareness of the wider impacts of eczema that are not acknowledged enough. We also want to encourage and empower people to open up and share how they really feel about living with this long-term condition.

As part of the campaign, we are going to launch an appeal page for More than “Just an itch”, to help National Eczema Society continue its campaigning work to raise awareness and improve medical care for the many people who are suffering with poorly controlled eczema. Do please donate if you can. By standing together as an eczema community, we can foster greater understanding and support for those living with eczema and challenge the stigma associated with the condition.

To donate to our More than “Just an Itch” campaign Text ITCH to 70450 to donate £5.

(Texts will cost the donation amount plus one standard network rate message, and you’ll be opting into hearing more from us. If you would like to donate but don’t wish to hear more from us, please text ITCHNOINFO instead.)

National Eczema Society has worked with other charities to create a Patient Charter for people living with atopic eczema, developed in collaboration with Sanofi. The new Patient Charter is being launched today (6 July 2023) in Westminster, where we are speaking to parliamentarians about the issues that matter to people with eczema.

Most people have heard the name ‘eczema’ and know about some of the more obvious symptoms like skin rash. But it’s hard to appreciate just how devastating eczema can be, unless you or someone close to you has the condition. Eczema is a complex immune-mediated condition that has wide-ranging psychological, social and financial impacts, as well as the more obvious affects on people’s physical health.

From surveys, we know 4 out of 5 people with eczema say the condition has negatively impacted their mental health. Anxiety, depression and suicidal thoughts are much more common amongst people with moderate-to-severe eczema. In a 2021 survey, a third of respondents said they spend at least an hour every day managing their condition, doing things like applying emollients and other topical treatments. Half of the adults who took part in the survey reported having to take time off work because of their eczema.

Our patient charter makes a number of key recommendations:

  • Improved access to specialist dermatology care and psychodermatology services
  • People living with eczema to become genuine partners with healthcare professionals in their own care
  • Better education to help people self-manage eczema and improved mental health support
  • Dermatology services are supported to provide patient-centric care.

You can read the patient charter here, which has the full text of our vision for better care for people living with atopic eczema.

National Eczema Society is excited to be co-funding the 2023 UK Dermatology Clinical Trials Network research awards. These are focusing on projects to improve care for people of colour. The Society is awarding a £10,000 grant for the best research proposal to help make life better for people of colour who have eczema. This is in addition to the UK DCTN research award for any aspect of dermatology in skin of colour.

Applications can include work related to outcome measures and pilot or feasibility work, including surveys and qualitative research methods. Please consider applying! The closing date is 17 July 2023.

More information here.