Rare DiseaseMarch 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.
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.
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
Main episode: https://www.youtube.com/watch?v=O3Oh859lKCI Charity website: https://www.burningnightscrps.org/
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.
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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.