Written by Guest Blogger Victoria Abbott-Fleming
Our friend, Victoria, runs a support network for people with CRPS in the United Kingdom (UK). We asked her to write up a little bit of what Burning Nights does. Here is what she wrote. Thank you, Victoria!
Burning Nights CRPS Support finally began and went live in September 2014 and we became a registered UK charity in April 2016. At the time of it being set up not a single UK charity or website existed that was dedicated to raising awareness & supporting people affected by Complex Regional Pain Syndrome (CRPS) not only those living with CRPS but including the carers, family members, friends and loved ones.
There was just insufficient and no support or awareness in the UK for CRPS and after I found out that it was most likely that my second leg was going to be amputated, I knew we had to support not only those living with CRPS but also their loved ones, families, friends and carers. I also realised that the majority of medical professionals didn’t seem to be aware that this condition even existed. Visit the Burning Nights CRPS Support story to learn more about the charity and how they began.
Within only 3 months of starting, we were inundated with requests for help & support from not only people living in the UK but also international, so we decided to become a charity. After a lot of hard work, sheer determination and paperwork, charitable status was finally gained in April 2016. Now we are working to improve life for those living with Complex Regional Pain Syndrome (CRPS) and we provide some essential services, information and support to CRPS sufferers, their families, loved ones and carers, as well as to professionals in the health and legal fields.
We are self-funding and rely entirely on fundraising, donations and contributions. We operate a 100% donation policy. All members of the Burning Nights team work on a volunteer basis and are in the main CRPS sufferers themselves and all are unpaid.
What support does Burning Nights CRPS Support offer for those affected by Complex Regional Pain Syndrome?
Burning Nights CRPS Support offer a number of frontline, support and information services not only those living in the UK but to others affected by CRPS around the world, including:
- Telephone support and information helpline, manned by CRPS sufferers – the helpline is currently available in a limited capacity (01663 795055);
- Dedicated e-mail support system ([email protected]);
- Comprehensive, evidence based website containing information on CRPS, and potential treatments (burningnightscrps.org);
- 24/7 online community forum;
- Social media support;
- 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 that are currently in Manchester and Bath/Bristol but we are hoping to expand these to other areas of the UK;
- 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. These are essential to health professionals so that patients can be diagnosed quicker to enable treatment to start more rapidly
- Attendance at exhibitions to raise the profile of the charity and raise awareness of 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
If you would like any more information about Burning Nights CRPS Support please visit: www.burningnightscrps.org or call the Burning Nights CRPS helpline on (UK) 01663 795055 or email us on [email protected]
Burning Nights CRPS Support
Burning Nights CRPS Support finally began and went live in September 2014 and we became a registered UK charity in April 2016. At the time of it being set up not a single UK charity or website existed that was dedicated to raising awareness & supporting people affected by Complex Regional Pain Syndrome (CRPS) not only those living with CRPS but including the carers, family members, friends and loved ones.
There was just insufficient and no support or awareness in the UK for CRPS and after I found out that it was most likely that my second leg was going to be amputated, I knew we had to support not only those living with CRPS but also their loved ones, families, friends and carers. I also realised that the majority of medical professionals didn’t seem to be aware that this condition even existed. Visit the Burning Nights CRPS Support story to learn more about the charity and how they began.
Within only 3 months of starting, we were inundated with requests for help & support from not only people living in the UK but also international, so we decided to become a charity. After a lot of hard work, sheer determination and paperwork, charitable status was finally gained in April 2016. Now we are working to improve life for those living with Complex Regional Pain Syndrome (CRPS) and we provide some essential services, information and support to CRPS sufferers, their families, loved ones and carers, as well as to professionals in the health and legal fields.
We are self-funding and rely entirely on fundraising, donations and contributions. We operate a 100% donation policy. All members of the Burning Nights team work on a volunteer basis and are in the main CRPS sufferers themselves and all are unpaid.
What support does Burning Nights CRPS Support offer for those affected by Complex Regional Pain Syndrome?
Burning Nights CRPS Support offer a number of frontline, support and information services not only those living in the UK but to others affected by CRPS around the world, including:
- Telephone support and information helpline, manned by CRPS sufferers – the helpline is currently available in a limited capacity (01663 795055);
- Dedicated e-mail support system ([email protected]);
- Comprehensive, evidence based website containing information on CRPS, and potential treatments (burningnightscrps.org);
- 24/7 online community forum;
- Social media support;
- 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 that are currently in Manchester and Bath/Bristol but we are hoping to expand these to other areas of the UK;
- 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. These are essential to health professionals so that patients can be diagnosed quicker to enable treatment to start more rapidly
- Attendance at exhibitions to raise the profile of the charity and raise awareness of 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
If you would like any more information about Burning Nights CRPS Support please visit: www.burningnightscrps.org or call the Burning Nights CRPS helpline on (UK) 01663 795055 or email us on [email protected]