Our volunteers come from all backgrounds, but they all have one thing in common… They have chosen to share their time and skills to help our Charity. Thank You to each and every volunteer. Without them we could not offer the services that we offer.
Whether or not you have Complex Regional Pain Syndrome, what matters is you being able to give up your time to support patients, families, friends and carers of people living with this life-changing condition.
As well as being a trustee and fellow CRPS patient, Lisa has been involved with the Burning Nights CRPS Support as a volunteer since 2016 and has a hands-on role in a number of our services including live chat, support groups and managing the social media - from creating posts to answering direct message requests for support.
"You get so much out of volunteering; you help people, it gives you purpose and a huge sense of achievement."
Find out more about why Lisa wanted to get involved with Burning Nights CRPS Support in this short video:
Being able to use the knowledge I've gained of CRPS, as a sufferer myself, to help other people is a big part of my enjoyment - to be able to answer someone's questions and often just help put their mind at ease. Getting feedback and knowing I've made a difference is definitely the best part about volunteering.
I started by getting in contact with Burning Nights as a CRPS patient - they helped me massively and because of their help I wanted to give back to the charity. First, I did a fundraiser where I shaved my head and raised over £1,000 but even then I felt that I wanted to give back a lot more. I got involved more as a Social Media Volunteer which was perfect for me and I did that for a year before I had the opportunity to become a trustee.
My volunteering highlight has to be the young person's support group - they make me so proud. They have an Instagram group chat to which they invite every new person that comes along to the support group and they now talk and support each other even between support group meetings. I just like as the person that brought them together, I made that possible and that's ace!
I'd tell them to really think about doing it. We're completely flexible with what time you can give, your health needs and enable you to use your skill set in the best way. You get so much out of volunteering; you help people, it gives you purpose and a huge sense of achievement. You know that you're doing something positive with your time and any amount of time or skill you can bring enhances us as a charity.
Danielle is a volunteer with our Virtual Befriending Service and provides a weekly call to a fellow CRPS patient who has signed up to the service. The Befriending Service has seen an overwhelming amount of interest since its introduction in early 2021 and without the kindness and contribution of volunteers like Danielle, the world would be that little bit lonelier for many already isolated CRPS patients.
"Volunteering gives me a huge sense of purpose and it has helped me to feel I’m not just wasting my life away waiting for the next doctor’s appointment. I feel like part of a team without it being too big of a commitment – I only give the time I am able."
I have CRPS which can be a very lonely condition and it affects my mental health. I stumbled across Burning Nights online and saw that they offered virtual online support meetings. The first few times I signed up for the meetings but didn’t go in because I was too frightened but then I attended a meeting and built up my courage enough to talk. Soon I realised these meetings were my ‘once a month hope’ that I looked forward to and it slowly became like a little community for me.
Then our founder, Victoria, said the charity was in need of volunteers. I did hesitate for a long time because I didn’t want to commit to something that I wouldn’t be able to do – I didn’t want to set myself up for failure. I hadn’t worked for 10 years, since my car accident, but I spoke to Victoria and she was fantastic and told me all about the different roles and we chose something that suits my skills and personality.
My highlight has been becoming more confident using technology - I can now set up a video call! Another highlight has been the training the charity has provided to ensure I can do my role well.
I’d encourage them to go ahead. We’re a really welcoming team and there are lots of different roles available so you can find one that is a good fit for your skills. I’d also say that if you’re worried about the time commitment, as I was before I began volunteering, there isn’t any need to be – my role asks for just 2 hours a week which I work around my family and other commitments.
Amy is a Database Volunteer and has played a vital role in the introduction and ongoing use of our database system, looking at how we can utilise the available tools to do things better – both day-to-day procedures and other areas for development, including our stewardship programme.
"I enjoy being able to give back to a charity that could not normally afford my services."
I work as a Software Services Consultant and I decided I wanted to carve out some time to give back to a small charity as my clients are usually bigger organisations.
I chose Burning Nights as about 12 years ago I was mis-diagnosed with CRPS and at that time it was a learning process of, ‘What is this condition?’ before discovering it was not what was wrong with me and getting a proper diagnosis. Ever since then I’ve been aware of how little is known of CRPS to the wider public.
It’s being part of a volunteer group and hearing about real things that are happening – here’s a patient and their story and here’s how we helped them. In particular, the newer services like the counselling service and the new support groups that have been set up – it’s really thrilling to hear how they’ve had an impact already.
Oh, do it. Definitely! There’s something for everyone to do and even if you’ve only got a couple of hours a week to give, you’ll definitely make a difference.
As a Volunteer Graphic Designer, Chris was brought into Burning Nights to assist with designing branded packs and brochures, video editing, and marketing collateral with the intention of creating an easily identifiable image to promote the charity and gain more funding. Chris has certainly secured the legacy of his time with Burning Nights CRPS Support through the development of our Self-Care Packs, available to purchase from the online shop.
"I love using the thing I’m passionate about, which is design, to help others who are less fortunate. I get a great feeling of self-worth when I see my designs helping others."
I’d wanted to volunteer for many years to help give something back using my skill set so when Victoria got in contact with me through Reach Volunteering it was a great opportunity to utilise my skills to help the charity achieve their goals.
My highlight is definitely the moment I presented the first style guide for the Burning Nights Self Care and Wellbeing packs to the charity. To see their delight and excitement and sheer relief that their brief had been met was one of the most rewarding moments I’ve had. They’ve given their thanks and appreciation at every step of the process and seeing their faces and how much it means to them has definitely been my highlight.
I’d say yes, do it because people suffering from CRPS need our help – whether it is helping out at an event, helping with admin or bringing a more unique skill set to the charity. Whatever role you volunteer in it will be of benefit and will help Burning Nights succeed and achieve their goals.
Sarah lives in Staffordshire with her husband and Bichon Frise called Rosie. Sarah is an Occupational Therapist by training and has had CRPS for around 4 years, initially starting in her left leg but now also affecting her right arm.
Sarah said that she chose to volunteer with Burning Nights CRPS Support because "I wanted to use some of my skills acquired in my career to help others. I have also had quite a bit of treatment for CRPS and thought I may be able to help others with some of the knowledge I have acquired."