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EB Prescription Campaign

What are your experiences of EB prescriptions? We’re in the early stages of developing a public affairs campaign to address the challenges many of our members face when trying to access the EB prescriptions they need. To make sure this campaign is shaped by real experiences and focuses on the changes that matter most, we’d like to hear from you.

 

Members joining the conversation: What we heard

7 members joined our recent focus group in February to discuss the challenges around EB prescriptions to support our new campaign. The insights shared were incredibly helpful and have already shaped the direction of the campaign.

Two clear themes emerged:

  • Affordability: The financial strain of travelling to EB specialist centres and the wider economic pressures of living with EB.
  • Consistent Prescribing: Some members continue to face issues with GPs switching products without clinical guidance. Potential solutions include improved GP education and encouraging DHSC/ICBs to ensure no substitutions are made without input from EB clinicians.

These insights are helping us refine our campaign focus, aiming for practical, meaningful wins that directly support our community. We will keep you updated as the Campaign progresses.

When we launch the campaign we will be looking for some real member examples of the challenges you face. If you’d like to be involved in the conversation and share your story for the campaign but aren’t able to join the focus group, please get in touch with sarah.taylor@debra.org.uk. We’d love to hear from you and can let you know other ways you can be involved.

 

Why we need to hear from our members

At this stage, we believe the campaign will focus on the problem some members experience when GPs switch specialist EB dressings prescribed by EB specialists to cheaper, generic alternatives that are often less effective. We know this can lead to pain, infection risk and unnecessary distress.

We’re also keen to hear about:

  • The financial burden of EB prescriptions (England only)
    (EB patients do not currently automatically qualify for free prescriptions)
  • Any other challenges you face w
  • hen accessing the items you need to manage EB safely

Your insights will help us build a campaign with real impact and push for meaningful change.

 

What we already know

Some of these issues were raised in the 2023 EB Insights study

From the study we know:

Infographic showing statistics about specialist dressings: 88% of dermatologists say GPs won't supply them, 52% would prescribe generics, 47% of GPs question large orders, and cost is often not covered.

  • 76% of respondents use bandages, and provided detailed information about the types they rely on
  • Many non‑EB specialist healthcare professionals do not understand:
    • why specialist dressings are medically necessary
    • how they are funded within the health system
  • Members shared further experiences and challenges in the section highlighted on p.68 of the full report 

Your participation in this focus group will help us update, deepen and strengthen this evidence so we can make the strongest possible case for change.

Logo of DEBRA UK. The logo features blue butterfly icons and the organization's name. Underneath, the tagline reads "The Butterfly Skin Charity.
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