Calling all UK eczema researchers!

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.

May 2023

Leading professional dermatology organisations and other charities have joined National Eczema Society in calling for clear potency (strength) labelling of steroid creams and ointments. We are asking the UK medicines regulator, the MHRA, to ensure pharmaceutical manufacturers include consistent and clear potency labelling on topical steroid (TCS) tubes, packaging and patient information leaflets. Here is the full letter submitted to the MHRA.

Topical steroids are used by millions of adults and children in the UK to treat or prevent eczema flare-ups. It is important patients and their carers have the right information to use these medicines safely and effectively to manage eczema well. Topical steroids are effective treatments for eczema but, like many treatments, they can have side effects. People with eczema and carers are understandably concerned about overusing TCS. We believe clear potency labelling will help improve patient understanding and confidence in these widely-used medicines.

Steroid creams and ointments come in four levels of potency: mild, moderate, potent and very potent. When deciding on topical steroid potency, healthcare professionals take into account factors including eczema severity, the age of the person, and the area of the body where the eczema needs treating. People are sometimes prescribed different potency TCS to use on different areas of the body. Over time, patients can amass a number of different topical steroids medicines, with no meaningful information shown on the tube or packaging about their potency or equivalence.

The situation is made more confusing with the various types and many product names of topical steroid creams and ointments. The product packaging shows the percentage of active ingredient, but it’s difficult working out what this means in terms of the steroid strength. For example, 1.0% hydrocortisone is a mild topical steroid, whereas 0.1% betamethasone valerate is potent. There can be a six hundred-fold difference between mild and very potent topical steroids. Patient information leaflets that come with products rarely state the TCS potency level.

At the moment, the system relies too much on healthcare professionals explaining about potency, but there is not always time for this during busy consultations. It also relies on patients understanding and remembering what is said in consultations. We can – and must – do better.

We need standardised labelling, so that patients and healthcare professionals become familiar with the way that potency is shown across all the many different topical steroid products and brands. The labelling scheme must be independent of language and literacy level, to be inclusive and effective. The goal is to achieve a level of patient understanding comparable to sunscreen strength using the Sun Protection Factor (SPF) labelling, which enables people to use sunscreens confidently and effectively.

This call for clearer labelling has strong support from the eczema community. National Eczema Society conducted an online survey in January this year, 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, and many thanks to everyone in the eczema community who took part.

Almost all respondents, some 98%, knew that TCS comes in different potences (strengths). However, almost half said they did not know how many different strengths there were, and only 17% correctly answered ‘4’. Most people (70% of respondents) said they would look at information printed on the tube or product packaging to find out about potency. It seems a glaring omission that potency information is not routinely provided at the moment. Some 95% of respondents said they would like to see clear strength labelling on all steroid creams and ointments. See here for the full survey results.

A report on the findings from this survey, and a further survey conducted in March investigating awareness of specific topical steroid products, has been published in the Clinical and Experimental Dermatology Journal – see here. The research highlights 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. Many people used the survey to express their concerns with topcial steroids.

This initiative for clearer labelling has strong support from healthcare professionals and other charities, with the following organisations endorsing the National Eczema Society’s campaign:

• British Association of Dermatologists
• British Dermatological Nursing Group
• British Society for Paediatric and Adolescent Dermatology
• British Society for Allergy & Clinical Immunology
• Dermatology Council for England
• Eczema Outreach Support
• Primary Care Dermatology Society
• Scottish Dermatological Society

Please see our webpage and other information for more about topical steroid treatments for eczema.

The survey is now closed – thank you everyone who took part.

Do you use steroid creams and ointments to manage eczema flare-ups? If you do, please consider completing our short online survey.

Topical steroids are used routinely to treat skin conditions including eczema. Some products can be purchased in pharmacies and others are prescribed by healthcare professionals. It’s important people know the strength of their topical steroids, to use them safely and effectively for maximum benefit.

National Eczema Society wants to learn more about people’s understanding of steroid creams and ointments. If you live in the UK and have eczema, or care for children with eczema, please complete our online survey. It only takes a few minutes. The results will provide valuable new evidence about people’s knowledge of these commonly-used medicines. They will also highlight areas where we need to improve understanding. Thank you!

Email us at info@eczema.org if you want more information about the survey, or information about topical steroid treatment for eczema. You can read our factsheet on Topical steroids here.

New study finds low treatment satisfaction, poor control of eczema symptoms, high psychosocial burden and clear gaps in patient-centered care for eczema patients worldwide.

The Global Patient Initiative to Improve Eczema Care (GPIIEC), a partnership of eleven patient organizations, today (6 April 2022) released a global report of eczema patient care in eight countries: Australia, Canada, Denmark, France, Italy, Germany, United States, and the United Kingdom. National Eczema Society contributed views and experiences of people with eczema from the UK.

The Initiative is a global collaboration to establish common measures to assess the responsiveness of health systems to the needs of patients and their caregivers, and to identify opportunities for improvement.

Eczema is a long-term relapsing inflammatory skin condition that impacts approximately 15% to 20% of children and 1% to 3% of adults globally, resulting in a significant patient burden and high demand on health care systems. A global survey by the GPIIEC that received over 3,000 responses found that patients in every country, and particularly those who lived with moderate to severe eczema, are struggling to achieve long-term control of their eczema symptoms and report limited satisfaction with current treatments.

Survey respondents from the UK, both adults and parents of children with eczema, reported the lowest or low scores on the measures for long-term control of eczema symptoms, satisfaction with eczema treatments, patient education, shared decision making and life span trade-off.

Poorly controlled eczema, which does not respond well to current treatments, has a substantial impact on patients’ health-related quality of life. Based on adult patients’ descriptions of their health, they would be willing to sacrifice between 18-38% of their remaining life span in order to be restored to perfect health. Key drivers of lower quality of life were the pain and discomfort of eczema and the mental health impacts such as anxiety and depression.

Moderate to severe eczema is complex and chronic, demanding a high degree of patient involvement in ongoing symptom management. However, education and training for this role is minimal and patient input into treatment decisions is lacking in almost every country surveyed. Interestingly, shared decision making, defined as asking patients and caregivers about their priorities during a medical visit, was predictive of symptom control. This finding suggests that such involvement may improve medical care and outcomes, and serves as a target for improvement for health systems in each country.

About Global Patient Initiative to Improve Eczema Care (GPIIEC)
GPIIEC is a patient organization-led effort to measure the performance of health systems in meeting the needs of people with eczema (atopic dermatitis) and their caregivers using a common methodology to allow for direct comparisons. For more information: www.improveeczemacare.org

Last updated 01.06.21

We will continue to update this page as new information that may be relevant to people with eczema comes to light. For more general information on Covid-19, please see the NHS website.

Do Covid-19 vaccines affect eczema?

To date, there is no robust evidence to indicate that Covid-19 vaccines make underlying skin conditions, including eczema, worse.

We have heard from a number of people who have told us that their eczema has worsened or re-appeared after receiving a Covid-19 vaccine. If you experience a side effect after receiving one of the vaccines, including worsening of your eczema, we encourage you to report it to the Medicines & Healthcare products Regulatory Agency (MHRA)’s Coronavirus Yellow Card reporting site. Alternatively, report it to your GP. By doing this, an evidence base can be built up regarding the vaccines and eczema.

SECURE-AD Patient Survey – how does Covid-19 vaccination affect people with eczema?

The SECURE-AD research team is running a survey to gain more insight into how the pandemic affects people living with atopic eczema. They are very interested to find out how people living with atopic eczema feel about and experience Covid-19 vaccinations. More information on the survey can be found here. To complete the survey, please go to the SECURE-AD website. Thank you!

Can people on treatments that affect the immune system take Covid-19 vaccines?

People taking systemic treatments that affect the immune system (for example, prednisolone, azathioprine, ciclosporin, methotrexate, mycophenelate mofetil and dupilumab) are advised to avoid ‘live’ vaccines. The three Covid-19 vaccines that are currently being rolled-out in the UK are not ‘live’ vaccines and have no Covid-19 virus in them. This means that people on treatments that affect the immune system can take them.

We don’t have enough information at the moment to know whether being on an immunosuppressant or biologic treatment will reduce the effectiveness of the vaccines.

People taking systemic treatments that affect the immune system are unlikely to need to stop taking their treatment (or delay starting new treatment) in order to take one of the Covid-19 vaccines. Check with your doctor if you’re unsure.

For more information on eczema, treatments that affect the immune system and the Covid-19 vaccines, please see the British Association of Dermatologists’ Covid-19 Provisional Guidance on Vaccination and the Government’s Green Book Covid-19 Provisional Guidance.

Which types of face coverings are the most eczema-friendly?

Face coverings made from 100% cotton that can be washed regularly are probably the most eczema-friendly type of covering. Cloth ear loops are less likely to irritate the skin than elastic ones. Also consider coverings that tie around the back of the head. ‘Mask headbands’ or hats with buttons are another option. With these, the elastic loops around the buttons rather than your ears. ‘Neck gaiters’, ‘buffs’ or ‘tube scarfs’, which are basically a tube of material, might suit too – if 100% cotton.

Make sure the covering fits snugly around your nose and mouth but isn’t tight.

Avoid applying ointment emollients to the face shortly before you put on a covering, as they might make the face too hot.

How can I mitigate the effects of frequent hand-washing?

We recommend that people with eczema follow the government guidance to wash hands with soap and water, rather than an emollient soap substitute, as much as practically possible. Soap is considered to be more effective than emollient at breaking the lipid envelope surrounding coronavirus particles, and removing the virus from the skin.

Frequent washing of hands with soap can, however, cause problems for people with eczema, including dry skin and hand eczema. It is very important people find ways of managing dry skin and hand eczema that may be caused or worsened by frequent washing with soap.

Strategies for this include:

• After washing hands with soap and water, re-wash using emollient to help protect the skin.
• Use emollients to moisturise the hands after washing and at other times during the day when the skin feels dry and sore.
• Dry hands well after washing by gently patting them dry, not rubbing. When drying your hands, take special care between the fingers where the skin is more prone to dryness and cracking, and build-up of soap residue.
• Rehydrate sore dry hands overnight, using an ointment and wearing clean cotton gloves.
• Wear nitrile gloves if you need to handle detergents or other cleaning products that can irritate the skin. These provide a physical barrier for the skin and can be purchased from chemists or from online shops.
• If you develop more severe hand eczema or suspect your skin is infected, you should contact your GP and may need prescription medicine to reduce the inflammation.

If you feel you need to use sanitising gel (which may irritate your eczema), apply your usual emollient afterwards to minimise any irritant effect.

In public places where you can’t avoid touching surfaces, try not to touch your nose, eyes or mouth (or your child’s) because the virus gets in through mucous membranes.

What are the most eczema-friendly soaps?

We asked our followers on our social media channels which soaps they would recommend. Not all products will suit everyone, but people with eczema have said the following brands/products have worked well for them:

• Dove
• Faith in Nature
• Simple
• Olive oil soaps

We don’t recommend applying olive oil to the skin as it can damage the skin barrier, but olive oil soaps seem to be well-tolerated by many people with eczema who responded to our request for soap recommendations.

How can I see a GP or dermatologist?

Please don’t delay in getting healthcare. If you need urgent medical help and it’s not an emergency, contact your GP or NHS 111 online or telephone NHS 111 first. Your GP practice should offer online, telephone and video consultations. If you are invited in for a face-to-face appointment, infection control measures are in place to keep patients and staff safe.

The Covid-19 NICE guidance says that dermatology departments should ‘optimise the use of teledermatology, such as telephone and video consultations’. If your dermatology appointment has been cancelled due to the crisis, try to find out whether a telephone or video consultation would be possible instead.

Does Covid-19 pose a higher risk for people on systemic treatments?

For more information about systemic treatments for eczema and Covid-19 risk, please see the British Association of Dermatologists’ Risk Stratification Grid. It gives information about Covid-19 risk relating to systemic treatments and other factors.

Am I more likely to develop Covid-19 as a result of having eczema?

There is no evidence to suggest that people with eczema are more likely to develop Covid-19 or to experience a more severe form of the condition if they do develop it.

National Eczema Society is very pleased to have received vital new funding from the Coronavirus Community Support Fund. This award allows us to continue to support people with eczema and their families over the coming months.

Like many charities, National Eczema Society has experienced a big drop in income from some traditional fundraising activities, such as the London Marathon, as a result of coronavirus. This new funding enables us to maintain our services while we work hard to develop other funding opportunities.

The Coronavirus Community Support Fund, distributed by The National Lottery Community Fund, was created to help third sector organisations continue to deliver much needed information and support during the ongoing crisis. We are grateful to the Government for making this possible.