National Eczema Society has taken the difficult decision to close its eczema helpline and stop providing personalised eczema advice. This change has been implemented today, 18 March 2024. We understand this will be disappointing for supporters and others who have used the Society’s helpline in the past and appreciate the advice provided. We have been pleased and proud to have supported people through the helpline for many years.
The Society produces a wide range of information about eczema and how to treat the condition. This is available through our website, factsheets, booklets, membership magazine, webinars and videos. We’re planning to grow these resources in the future, which are used and valued by millions of people in the eczema community.
We are a relatively small charity, serving a large community of people affected by eczema – over eight million adults and children in the UK and their families. With limited funding, we have to make difficult choices over how to allocate our limited resources to achieve the biggest impact for people with eczema.
We want to focus more on our work supporting eczema research, to develop better treatments and ultimately a cure, and campaigning for better eczema care for all sufferers. These changes will enable us to become a stronger collective voice for the eczema community. Too many people are struggling to achieve a good quality of life because of their eczema and we need better care urgently.
We recommend you speak to your doctor of other healthcare professional for advice about managing your eczema. If you have urgent healthcare needs, then contact NHS 111 or call an ambulance.
Organisations including the Samaritans and Mind, offer support with the emotional impacts of living with eczema – do contact these organisations directly if needed.
We will keep the situation under review and should the charity’s funding position become stronger in the future, then we will reassess the viability of having a helpline service.
If you have any questions about this, please email Andrew Proctor at info@eczema.org
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.
Wednesday 6 March, 6-7pm
Register for the webinar here.
Partnering with St John’s DermAcademy, we’re excited to bring you a webinar on all things eczema itch! This webinar will cover the reasons behind eczema itch, exciting research developments and the most effective ways to manage this challenging eczema symptom.
The webinar will be livestreamed via Facebook and the recording will remain available to watch afterwards. To be able to participate in the webinar, however (for example, by asking questions), you would need to register in advance and join on Zoom.
Programme
6.00 Welcome and overview of the evening by Dr Satveer Mahil
6.05 ‘Why does eczema itch?’ by Dr Sarah Drummond, Senior Clinical Fellow
Dr Sarah Drummond explains why eczema is itchy, highlights exciting research developments in eczema itch and looks at new treatments that are in the pipeline.
6.20 ‘Top tips for managing eczema itch’ by Julie Van Onselen, Dermatology Nurse Practitioner
Julie Van Onselen provides expert advice on how to manage itch, the best way to use creams and ointments, and how changes to your lifestyle and environment can help.
6.35 Panel discussion/Q&A
7.00 Close
Webinar speakers and chair
Dr Sarah Drummond
Senior Clinical Fellow in Medical Dermatology and Medical Education, St John’s Institute of Dermatology
Dr Sarah Drummond graduated from the University of Edinburgh and completed her training in dermatology within the West of Scotland. Her areas of interest include medical dermatology, in particular, immune mediated inflammatory diseases. She also has an interest in medical education and is an Honorary Clinical Lecturer at the University of Glasgow. Currently, Sarah is the Senior Clinical Fellow in Medical Education and Medical Dermatology at St John’s Institute of Dermatology.
Dr Satveer Mahil
Consultant Dermatologist
St John’s Institute of Dermatology
Guy’s and St Thomas’ NHS Foundation Trust
Dr Satveer Mahil is a Consultant Dermatologist at St John’s Institute of Dermatology, Guy’s and St Thomas’ NHS Foundation Trust and Reader at King’s College London. She graduated from the University of Cambridge and completed integrated academic training (NIHR Academic Clinical Fellowship and NIHR Clinical Lectureship) in Dermatology at St John’s Institute of Dermatology. During her MRC-funded PhD, she used genetic information to gain novel insights into the mechanistic basis of different forms of psoriasis and define new therapeutic targets. After her PhD, she was awarded an MRC Clinical Academic Research Partnership Award and she currently holds an NIHR Advanced Fellowship. Her translational research seeks to optimise outcomes for individuals with inflammatory skin diseases including psoriasis and eczema. She is director of St John’s DermAcademy (dermatology education academy).
Julie Van Onselen
Dermatology Nurse Practitioner
Julie is a Dermatology Lecturer Practitioner with 30 years’ experience in clinical dermatology, education and training. Julie works with many patient support groups, including National Eczema Society (NES), PAPAA and Ichthyosis Support Group. Julie is a clinical nurse adviser for NES and medical advisory board members. Julie is a health care writer and PCDS executive committee member. She is passionate about improving care in dermatology through educational initiatives for patients and health care professionals.
Other panellists
Dr Alpa Kanji, MA PhD (Cantab) MRCP CCT (Derm)
Dr Alpa Kanji is a scientist by background, having completed research in 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. She has a particular interest in atopic dermatitis, including the mind and skin connection, and is passionate about empowering patients to manage their skin condition optimally. She also teaches Habit Reversal, which encourages patients to eradicate longstanding habits of scratching and picking their skin.
Arlene McGuire
Mpharm, PGDip CPP, Independent Prescriber
Specialist Pharmacist Dermatology & Allergy Guy’s and St Thomas’ NHS Foundation Trust
Arlene has been practicing hospital pharmacy for 13 years, and became a Specialist Dermatology & Allergy Pharmacist in 2013. Arlene has a special interest in psoriasis and immunotherapy, qualifying as an Independent Prescriber in this field. Arlene is a member of the BAD clinical guideline group and was involved in the update of the Guidelines for Biologic therapy in Psoriasis 2020. Arlene started a national network for pharmacists working within dermatology across the UK in the hope that this can be a platform to share expertise and best practice.
Andrew Proctor
Chief Executive of National Eczema Society
Andrew Proctor leads National Eczema Society as its Chief Executive. The charity provides information and advice for people with eczema and their families, raises awareness of the condition, supports research and campaigns for better care. Andrew contributes patient experience for a number of research projects, including the BEACON and BEACON-omics trials.
If you’ve got eczema, the festive season brings its challenges, but we’ve got some tips to help you have a relaxing time while looking after your skin. This article was published in Exchange 186, Winter 2022.
1. Decorations
Trees, lights and decorations provide lovely Christmas cheer, but the dust they harbour can play havoc with eczema. Try to go for options that are smooth and easy to damp dust. If tree sap is a trigger for you, you might need an artificial tree.
2. Pace yourself
Christmas is a time when everything we learn about looking after ourselves during the rest of the year seems to go out of the window. Back-to-back nights out, long shopping trips, travel and family get-togethers can all take their toll. Have fun – but remember, sometimes less is more.
3. Be honest
Living well with eczema means making some adjustments in life. If something isn’t going to work for you – whether a get-together or an event – just explain clearly, but kindly. If someone gets it wrong, that’s not their fault, but don’t put your needs second.
4. Stay cool
Central heating and crowded rooms aren’t great for eczema. Plan ahead, dress accordingly, and step out for fresh air if you need to.
5. Routine
After a late night it’s easy to skip the emollient ‘just this once’. But hard-won routines can quickly unravel – especially as other daily routines melt away over the festive period. Staying on top of things is the best way to prevent a flare.
6. Overnight stays
It’s lovely visiting others at this special time of year, although this presents a host of challenges. You might need to bring your own bedding, damp dust the room and turn the temperature down. Plan ahead and have a chat with them about what you’ll need.
7. Having guests
Hosting is great fun, but can be a lot of pressure. If the thought of pulling off a large party sends your heart racing, try something smaller. When it comes to catering, find some shortcuts if you need to. If anyone judges, maybe they don’t deserve an invite!
8. Make-up
For many, the party season is all about looking glam. But it’s not always easy to find make-up that works for you. Look for products with as few additives as possible and test them in advance. Remember, products labelled ‘natural’ may contain all sorts of nasties.
9. Food and drink
It’s hard to avoid eating and drinking differently at this time of year – even if you wanted to. But if you have eczema, what you put into your body will have some effect on your skin. Try to earmark some days for staying healthy. Your skin will thank you.
10. Dressing up
Skin prone to eczema likes natural fabrics that let your skin breathe, layered for comfort. So when it comes to getting out the glad rags, you might need to compromise. But there are plenty of options. For example, can you invest in one silk dress or shirt for special occasions?
11. Stock up on meds
The only thing worse than a last-minute scramble to a 24-hour chemist is running out of medicines altogether. Find out about closing times well in advance. If you need to order your prescriptions earlier than usual, leave time for your prescriber to sign this off.
12. A word about presents
If you have eczema, over the years you may have received a sizeable haul of useless toiletries. If someone always gives you these, why not explain your doctor has told you to avoid them. If they’re really stuck, you could always suggest a donation to NES! Point them to eczema.org/donate.
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!