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Getting under the skin of severe Eczema

A new report, launched at an event for MPs today (18th October), reveals the latest evidence on the burden of severe eczema on patients, the NHS and the wider economy.

A new report, funded by Sanofi Genzyme and produced in collaboration with leading UK patient charity Allergy UK, has exposed a crisis in adult severe eczema in the UK. Atopic eczema, also known as atopic dermatitis, is the most common form of eczema, a condition that causes the skin to itch and become red, dry and cracked. It is usually a long-term  condition which can affect any part of the body. This inflammatory autoimmune disease affects up to 1.5 million people across the country.[1] [2]

Launched today at an MP’s ‘drop in’ event at Portcullis House the report “Seeing Red: Under the Skin of the Adult Severe Eczema Crisis” highlights findings from a patient survey undertaken by Allergy UK, including[3]:

  • 88% of patients saying that the management of their disease impacts on their daily lives
  • 58% feeling that it affects their personal relationships
  • 73% stating their social life is impacted
  • Over 70% feeling depressed as a result of the disease.

Despite these findings, which point clearly to the significant challenges faced by adults with severe eczema, a Freedom of Information (FOI) request to NHS Trusts and Clinical Commissioning Groups (CCGs) found that severe eczema has been under prioritised by policy makers and the NHS. For patients this means inconsistencies in the knowledge of skin conditions in primary care, a lack of consultant dermatologists, lengthy waiting times and the absence of national guidelines or quality standards for adults with the condition[4].

Nic Dakin MP with Carla Jones, CEO of Allergy UK and Amena Warner, Head of Clinical Services at Allergy UK

The report concludes with three calls to action:

  • To urgently address the delay in diagnosis and treatment, by improving the education and training of frontline healthcare professionals
  • To establish guidelines across the UK for the diagnosis and treatment of severe eczema in adults
  • To facilitate a care pathway for patients with funding for the appropriate treatment and care for patients with severe eczema.

Nic Dakin, MP for Scunthorpe, hosted the ‘drop in’ event, encouraging those who attended to sign a pledge to support the actions called for in the report.  He says: “This report highlights, for the first time, the very real challenges that adults with severe eczema face in pretty much every aspect of their lives. And the evidence that this distressing and painful condition has been under prioritised by policymakers and the NHS further underlines the situation of around 1.5 million people in the UK.  It is time that we addressed this issue, starting with these very specific calls to action which focus on better education for healthcare professionals and more appropriate funding for patients.”

Carla Jones, CEO of Allergy UK welcomes the report: “It is great that the MPs at the launch event pledged to support the calls for action that have come out of this report. From our contact with patients, through our Helpline, we are very much aware of the significant challenges faced by adults with severe eczema in their everyday lives.  A patient testimonial in the report captures the stark reality of living with severe eczema:  “Life is passing by and I am being prevented from reaching my potential because of this condition.  I have been hampered academically, and in career terms, by something so overwhelming but so misunderstood by most people. It’s a living hell.” We are keen to work with policy makers and the NHS across the UK to bring about the improvement in the diagnosis, treatment and care of adults whose lives have been made a ‘living hell’ by  this distressing skin condition.” 

References

[1] S. Nutten, Annals of Nutrition and Metabolism, ‘Atopic Dermatitis: Global Epidemiology and Risk Factors’ (2015). Available at: http://www.karger.com/Article/PDF/370220 (Accessed: April 2017)

[2] Office for National Statistics. 2016 UK mid-year population estimate. Available at: http://www.ons.gov.uk/generator?uri=/peoplepopulationandcommunity/populationandmigration/populationestimates/articles/overviewoftheukpopulation/february2016/ff1144ea&format=xls  (Accessed: April 2017) 

[3] Allergy UK, Survey of patients with severe eczema (November 2016 – December 2016)

[4] Sanofi Genzyme data on file

Notes

About Allergy UK

Allergy UK is the leading national patient charity with a mission to improve the lives of people living with all kinds of allergic disease. The charity provides a Helpline and information and support for people living with allergy. It also helps to educate health professionals about allergic disease.

 About Sanofi Genzyme

Sanofi, a global healthcare leader, discovers, develops and distributes therapeutic solutions focused on patients' needs. Sanofi is organized into five global business units: Diabetes and Cardiovascular, General Medicines and Emerging Markets, Sanofi Genzyme, Sanofi Pasteur and Merial. Sanofi Genzyme focuses on developing specialty treatments for debilitating diseases that are often difficult to diagnose and treat, providing hope to patients and their families.

 Report calls to action in full

  1. Urgently address the delay in recognition, diagnosis and management of severe eczema in adults by improving the education and training of front line healthcare professionals.
  2. Establish guidelines across the UK for the diagnosis, management and treatment of severe eczema in adults, including a nationally standardised scoring tool.
  3. Facilitate a care pathway with appropriate coding and funding for people with adult severe eczema to get the appropriate treatment and care through policy changes. 

Download the report here.

Survey and FOI

Allergy UK ran a survey of patients with eczema from 15th November 2016 until Friday 9th December 2016. The number of respondents to the survey was 305. The project was funded by Sanofi Genzyme, who had no editorial control over the content or the outputs from the survey.

 A Freedom of Information request was sent to 153 NHS Trusts and 209 Clinical Commissioning Groups in June 2016 regarding the management of dermatology services broadly and severe eczema specifically. Results were collated between August and September 2016. The work was funded by Sanofi Genzyme. Sanofi Genzyme holds the data on file.

 

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