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Rare Disease
March 13, 2026

Patient Group Spotlight: Burning Nights CRPS Support with Victoria Abbott-Fleming

Victoria Abbott-Fleming shares her CRPS journey, the mission behind Burning Nights, and why patient voices must shape treatment and policy.

Guest: Victoria Abbott-Fleming — Founder, Burning Nights CRPS Support

In this episode of the PatientGroups Podcast, Matt Powell and Sumira Riaz speak with Victoria Abbott-Fleming, founder of Burning Nights CRPS Support.

Victoria shares her journey from legal training and teaching to becoming one of the UK's strongest voices for people living with Complex Regional Pain Syndrome (CRPS). The conversation explores lived experience, mental health impact, medication access, and why patient voices must shape care, policy, and research.

Key Takeaways

  • CRPS can affect every layer of life, not only physical pain but identity, confidence, and mental health.
  • Better communication across healthcare is essential to reduce self-blame and prevent avoidable distress.
  • Patients and families should be active partners in research, not a tick-box consultation step.
  • Access to treatments that are working should be protected, especially in rare disease settings.
  • Community matters: nobody should face CRPS alone.

    • Timestamps

  • 0:00 - Welcome and guest introduction
  • 1:17 - Victoria's life before CRPS
  • 27:51 - The psychological impact of chronic pain
  • 28:38 - Message to pharma and healthcare leaders
  • 31:32 - The impact of withdrawing working medications
  • 32:55 - Final message: you are not alone

    • Watch and Follow

  • Main episode: https://www.youtube.com/watch?v=O3Oh859lKCI
  • Charity website: https://www.burningnightscrps.org/
    • Bu
    Burning Nights CRPS Support
    Chinley, Derbyshire, England

    About the Organization

    Burning Nights CRPS Support is a charity that raises awareness for Complex Regional Pain Syndrome (CRPS), a chronic neuropathic pain condition. It also provides support for sufferers, their families, friends, carers and loved ones.

    Visit WebsiteContact Organization

    Shorts

    From Barrister to CRPS Advocate: Victoria's Journey

    Life can pivot in an instant. Victoria shares her journey from legal training to founding one of the UK's leading CRPS charities.

    Watch on YouTube

    The Hidden Mental Toll of Chronic Pain

    Watch on YouTube

    Don't Treat Patients as a Tick Box

    A direct message to pharma and healthcare decision makers: involve people with lived experience and families in meaningful ways.

    Watch on YouTube

    Why Are Working Medications Being Withdrawn?

    Watch on YouTube