10 Years of Burning Nights CRPS Support

An interview with Founder, Victoria Abbott-Fleming

The 15^th June 2024 marks 10 years since the work of Burning Nights CRPS Support began. Starting life as a small information website that was swamped by demand, it became a fully registered charity on 16^th February 2016. This year marks a decade of raising awareness of CRPS nationally, educating health professionals, and supporting patients and carers.

Founder, Victoria Abbott-Fleming MBE, describes the challenges and successes of the last 10 years, as well as sharing her hopes for the future of the charity.

After my diagnosis with CRPS 20 years ago, I went home and searched on the internet for any information I could find on the condition. I found a charitable organisation in the USA, but very little from anyone based in the UK. 

I did eventually find a small organisation over here - but none of their events were close enough for me to attend.

There was a great need for information and support. 

Information about CRPS, and real-life advice on managing its effects, would have made a huge difference to me in my 20-year journey living with the condition. In July 2014, after I was told I would need my second leg amputated, I decided to create that hub for CRPS warriors myself.

Find more on the story behind Burning Nights CRPS Support here.

In Summer 2014, I set up Burning Nights as a website with an online forum - purely to provide basic information and support. I created a little online shop with items to help with awareness raising, including a postcard, folded card, and bookmark.

It was rapidly clear that CRPS warriors (and their families) desperately needed a community that understood their struggles.

It took me - through many conversations with my husband Michael - over a year to decide how to meet that need and take Burning Nights forward. It became important to register as a UK charity.

I started with the paperwork and the solicitors in October 2015 – I had no idea about the amount of paperwork involved! 

The greatest challenge initially was raising the money to become a registered charity. No-one wants to donate to an organisation that isn’t registered, and yet you need to raise funds to get started as an organisation: it’s a Catch-22! 

We became a registered charity in February 2016 - I was proud and extremely pleased that day!

Volunteers are critical to the success of Burning Nights CRPS Support. 

After overcoming the initial obstacle of achieving charitable status, finding volunteers to help us deliver our services for CRPS warriors has become the most important challenge. We have only one paid member of staff and I couldn’t - and can’t - do everything else myself! It's crucial to find the right volunteers for the right areas, from counsellors to befrienders to blog writers, to meet the needs of our community.

Would you like to join our volunteer team? We would love to hear from you.

Setting up Burning Nights CRPS Support as a registered charity in February 2016 was a fantastic high. I am proud that we offer services and support to CRPS warriors that I never thought possible. 

Psychological support, in particular, is crucial to managing and living with CRPS - and was something missing from my treatment when I was diagnosed 20 years ago. I am so grateful that, through the charity, we can offer counselling and a befriending service to those coming to terms with the condition.

Being recognised with an MBE for the work we have done, and continue to do, in raising awareness of CRPS was also something pretty special. 

I hope that more pain clinics refer their CRPS patients to Burning Nights CRPS Support so they know that there is a community who understand and can support them. 

I’d love to see the charity have more staff so that we can expand all our services and accommodate anyone from the CRPS community. 

Personally, I’d enjoy spending more time on public speaking and advocacy (helping others with CRPS stand up for their rights). Having trained as a barrister, I thrive in the advocacy side of this job. 

We are currently focused on developing our support services for young people with CRPS, as well as for the carers of people living with the condition. 

Over the next 5-10 years, we must find ways to raise the necessary funding to, not just run, but also expand, some of our vital services. Particularly, our team of befrienders and our counselling and psychotherapy service, where we'd like to be able to offer face-to-face sessions.

We’d love to expand the hours we deliver on live chat and offer 7-days-a-week support with longer opening hours - but to do so we would need more volunteers. 

We’re expanding our literature and enhancing our membership packages further, including our fantastic “The Warriors Lifeline” magazine. 

We hope to forge and develop more relationships with pain clinics across the UK and demonstrate how we can support their patients.

Over the longer term, I would love to increase our team of staff and volunteers and move into an office where we can hold face-to-face therapy. I would like to be able to offer the CRPS community a 12-week course on the self-management of their pain, as well as running courses for carers and families to learn about the condition.

Volunteers are the heart of Burning Nights CRPS Support.

They are the engine that drives us forward in providing support, information, and resources to all those affected by CRPS. Without our dedicated and inspiring Volunteer Team, we wouldn’t be here today.

From befriending to fundraising, therapy to marketing, advocacy to digital support; we rely on volunteers to make what we do possible.

To find out more about volunteering with us, and the current opportunities available, visit the volunteering section of our website.