Burning Nights CRPS Support

Burning Nights CRPS Support was founded in September 2014 by Victoria Abbott-Fleming, who lives with Complex Regional Pain Syndrome (CRPS) and is a bilateral above knee amputee. They became a registered charity in April 2016. The charity is dedicated to raising awareness & supporting people affected by a poorly understood neuropathic pain condition, Complex Regional Pain Syndrome (CRPS).

CRPS affects 1 in 3,800 people in the UK which is approximately 15,000 newly diagnosed cases every year, which doesn’t account for those who may have been undiagnosed or misdiagnosed. CRPS can cause a person to experience persistent, severe and debilitating pain. The condition may develop after an injury, surgery, stroke or heart attack, but the pain is out of proportion with the severity of the initial injury or trauma. The cause of Complex Regional Pain Syndrome isn’t clearly understood and CRPS awareness in the UK is low.

Burning Nights CRPS Support provides a range of frontline services to help those affected by CRPS, including:

  • A telephone helpline, manned by CRPS sufferers – our helpline is currently available in a limited capacity (01663 795055);
  • A dedicated e-mail support system (support@burningnightscrps.org);
  • A comprehensive, evidence based website containing information on CRPS, diagnosis, prognosis and potential treatments (www.burningnightscrps.org);
  • A 24/7 online community forum; Social media support;
  • A range of information and awareness products designed to help people understand the effects of CRPS;
  • Regular local support groups that provide support to individuals and families;
  • Annual National conference with speakers working with and knowledge of CRPS and disabilities;
  • CRPS awareness training sessions to professionals in the primary care and tertiary sector;
  • Attendance at exhibitions to raise the profile of the charity and CRPS
  • Access to legal support
  • Fundraising support which includes event awareness on our website, our e-newsletter and across our social media as well as limited awareness items
  • Provide interviews and volunteers for interviews in the media and on social media
  • Assist in CRPS research projects and surveys and help to provide volunteers

For more information about Burning Nights CRPS Support please visit: www.burningnightscrps.org or call the Burning Nights helpline on 01663 795055

You will also find us on Facebook and Twitter