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Patient Voice

National Eczema Society provides a 'patient voice' at regular and one-off meetings and for projects relating to eczema. Here are examples of meetings and projects to which we have contributed:

Regular meetings

  • All-Party Parliamentary Group on Skin (APPGS). The APPGS aims to increase understanding of skin care issues in Parliament and achieve improvements in the treatment and management of patients with skin disease. The APPGS gives us the opportunity to engage directly with politicians on important issues affecting people with eczema.
  • British Association of Dermatologists: meetings of Dermatology Patient Support Groups. We attend these meetings twice a year, and work with other patient support groups to raise awareness of issues that affect all or many of us (for example, emollient rationing).
  • Dermatology Council for England (DCE). We attend DCE meetings twice a year. The DCE brings together a wide range of key dermatology stakeholders and aims to keep government and professional bodies aware of the needs of the dermatology community.

 

Other meetings and projects 

  • Medicines and Healthcare products Regulatory Agency (MHRA). We attended a stakeholder meeting on the fire hazards of emollients, which discussed the risks of fabrics containing emollient residue catching fire when coming into contact with a naked flame, and how to convey these risks to the public. We emphasised the importance of warnings being proportionate to risk. We also gave feedback on an MHRA public information video on the fire hazards of emollients.
  • European Atopic Dermatitis Advocacy Meeting organised by biopharmaceutical company Pfizer in 2018 in Paris. This meeting discussed the impact of multiple terms for atopic dermatitis, whether there were gaps in the burden of disease data, and how to write effective health technology assessments.
  • The Straight Up Skincare Project. We gave feedback to the multinational consumer goods company Reckitt Benckiser on the content and wording of their Straight Up Skincare information packs aimed at pharmacy professionals. We also provided dermatology nurse representation at a free, one-off Straight Up Skincare Clinic in central London, giving free information and advice.