3rd Annual National Burning Nights CRPS Support Conference Summary
Every year usually during November, CRPS awareness month Burning Nights CRPS Support charity holds a free annual national CRPS conference. This year was no different. The 3rd Annual National Burning Nights CRPS Support charity Conference was held at the Marriott Bexleyheath, Kent on Saturday 4th November 2017.
Our annual national CRPS conference is one of the charity’s main events that help to support not only those living with Complex Regional Pain Syndrome but also to support those who either have a loved one or care for someone with CRPS. The conference is also to raise awareness and spread awareness of CRPS amongst healthcare and legal professionals and students.
Overall the conference was extremely well received and there was some great feedback from those who attended the CRPS conference.
SpeakersEvery year we invite speakers who either work in or have working knowledge of Complex Regional Pain Syndrome. This year was no different. However due to some last minute speaker changes we heard from Dr Chris Jenner, Mr Rob Warren and Mr Altaf Patel. We also heard from 3 CRPS sufferers who recounted their patient journeys to where they are now. These 3 patient journeys were extremely emotional and showed exactly what people who live with CRPS go through to reach the point in their lives where they are now. To give you an idea of what each speaker spoke about, we have included below a brief outline of their speeches. We would like to give our most sincere thanks to all those who spoke at the conference and for giving up their time at the weekend.
Dr Chris JennerDr Jenner is a CRPS specialist and also does medico-legal reports. He works for Medicolegal Associates. Dr Jenner gave an interesting speech about the treatment options available for Complex Regional Pain Syndrome. He discussed the Stanton-Hicks diagram for CRPS which is below and it was disappointing that only one person in the room had heard of the Stanton-Hicks diagram for CRPS treatment options. Dr Jenner stressed that no one single treatment is going to work on its own but instead it should be several treatments that are used in conjunction with one another, to try and stop the signs and symptoms of CRPS becoming chronic or worsening. As always there was a flood of questions for Dr Jenner which was great for those attending the conference, as this was an opportunity for people affected by CRPS to ask questions from a treating physician. Due to last minute issues with Mr Fitzgerald who was going to give a speech on the Dorsal Root Ganglion (DRG) stimulation treatment, we had to swap Mr Fitzgerald with Dr Jenner, who kindly continued in the morning session with a talk on the DRG treatment for CRPS. Please have a look at our blog on the complete guide to Dorsal Root Ganglion (DRG) stimulation treatment for Complex Regional Pain Syndrome (CRPS). Dr Jenner continued to speak about the DRG treatment for CRPS including what it was, how it’s implanted, referral guidelines, the assessment process and how it can help CRPS patients. There were a good many questions including how to find a pain clinic that implants the Spinal Cord Stimulator (SCS) and the DRG. This is where Abbott came in. Clair and Steve are a part of Abbott and they kindly agreed to come along and answer any questions people had about the Dorsal Root Ganglion treatment for CRPS. Abbott is a manufacturer of both the SCS and the DRG and they’ve set up a great website called About My Pain giving information about the DRG treatment and there is also the ability to find your nearest pain clinic that implants the SCS and/or the DRG. Why not take a look at the About My Pain website? **For any healthcare professionals who write medico-legal reports for Complex Regional Pain Syndrome patients please read Dr Jenner’s important article entitled “Removing the Complexity from Complex Regional Pain Syndrome (CRPS) Cases”
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Chris Edwards – MotabilityUnfortunately due to an emergency Chris was unable to come along to the 3rd annual national Burning Nights CRPS Support conference. However there were some materials on the tables from Motability that people had access to and could take with them. If you have any questions about the Motability Scheme please contact us and we can pass on any questions you may have.
Mr Rob WarrenRob is an Occupational Therapist at Plexus Healthcare and he gave a very engaging and insightful speech on “How best to use your OT – What they do and what they can do for people with CRPS.” Rob was not only entertaining with his speech but he really did give some good and useful information about how best to use your OT. The main points that came out from his speech were:
- An occupational therapist is unable to change your pain but they can assist you with maximising what you want and need to do within the parameters of your pain.
- They can achieve this by adapting the environments (physical, social and psychological) to enable you to maximise the positive external effects they have on you.
- They can also analyse in detail the activities that you regularly do to establish the most useful way of completing them within the parameters of your pain.
- By adapting or modifying your environments and activities this should have a positive effect on your pain and support/compliment the other treatment you are receiving.
Key things to remember from Rob’s speech:
- The pain you experience is particular to you, so essentially you are the expert. The occupational therapist should work in partnership with you to develop strategies and approaches that will allow you to maximise your function. If you feel this is not happening you can complain or ask for a different therapist (Please see section 10 of the IGA Duty of Care) Please also have a look at the Social Care Institute for Excellence ‘Understanding Common Induction for Duty of Care’
- You are unique, your situation is unique and there is no ‘one size fits all’ solution, so unfortunately it is difficult for services to be able to cater for everyone, however, your OT can help you create a solution that best fits you, don’t be afraid to be creative and ask, is there anything else that can be done?
- As the expert in your pain, do not be afraid to educate the OT in your experience and use the OT as a resource to enable you to develop strategies and approaches that work for you and your situation.
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Mr Altaf PatelAltaf is a Personal Injury solicitor and CEO of Cromptons Solicitors. Altaf has dealt with many CRPS cases and gave a talk on what’s involved in a personal injury claim for Complex Regional Pain Syndrome (CRPS). Altaf has written 2 blogs on personal injury legal claims for CRPS which you can read via: Personal Injury Claims Part One Personal Injury Claims Part Two A number of people attending the conference had gone through legal claims and a few of them had had a bad experience of dealing with solicitors and legal claims. Altaf also spoke about surveillance and how the defendants use surveillance to try and ‘trick’ claimants such as knocking on your front door to not only check who you are but to also find out how long it takes for you to answer the door. Altaf also spoke about the cost of taking a claim to court and what funding was or wasn’t available to help you fund you claim.
3 CRPS PatientsWe also heard from 3 CRPS patients who recounted their journeys of living with Complex Regional Pain Syndrome (CRPS). Those 3 people were: Molly Jones, Maddie Gordon and Lisa Davis. All three CRPS journeys were very emotional and the bravery of the 3 ladies not only to go through everything that they’ve gone through to date but also to tell their CRPS stories in front of the conference audience.
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Molly JonesMolly is a young lady who recounted her CRPS journey very eloquently. She told the conference attendees how she came to be diagnosed with CRPS as a teenager. This is a brief summary of Molly’s speech:
“I’m 20 years old and have had CRPS type 1 for 8 ½ years. I managed to get CRPS from slipping down some stairs on a school trip and getting a hairline fracture in my toe. After a few months, my mother and I noticed my toe was still swollen and we went back to the GP who confirmed the swelling would go down. After another 6 months, we realised my entire foot was now swelling and in indescribable pain that was stopping me from going to school and social events, we were told this was normal but were sent for an x-ray anyway and that too said nothing was wrong. This continued for months until 3 years later when a fracture clinic doctor at the local hospital suggested it could be CRPS. Since then I’ve been admitted to The Evalina Children’s hospital in 2012 at which point I had CRPS in my entire right side and lost the use of my right arm/hand and leg completely and was told to use a wheelchair. During this time I was being bullied at school because of my CRPS, had lost a lot of friends and 7% attendance, I was also in the middle of my GCSE’s at this point however still managed to obtain 10 A*-C’s from all my revision at home! In 2014, I was admitted to Bath Centre for Pain Service which was amazing and through a 3 week residential stay I was able to stop using my crutches and regain simple skills such as brushing my hair and getting in and out of the bath, but was told that university was probably an unreachable goal. In 2015, I moved to university in Brighton to study vocals and have lived independently during this time, since moving away from home and my mum, life has been very difficult. I have been using my crutches again permanently and my CRPS has moved to my left side too resulting in full body, I have been abandoned by my local pain management and I am now looking at wheelchairs and additional help and attending uni minimally. However, I am happy and receiving lots of support, especially since finding Burning Nights and aim to graduate next year!”
If you’d prefer to watch what happened instead of reading about it, here’s our 3rd Annual National Burning Nights CRPS Support Conference 2017 in a short 5 minute highlight video:
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Maddie GordonMaddie is a young teenager who lives with Complex Regional Pain Syndrome (CRPS) and is 14 years old. Maddie gave an interesting and engaging talk about how CRPS has affected not only her health but also affected friendships. She showed some of her photographs that pictured her progression with her Complex Regional Pain Syndrome.
I developed CRPS after a fall when I was just 11. The hospital thought I had a fracture, so put me in cast for ‘good measure’. I realised that something was terribly wrong when the cast was coming off. There was a lot of pain, I didn’t know where from. Fast forward 3 years, and I have full body CRPS and I am fully dependent on a wheelchair. It has been extremely difficult to deal with and I’m constantly in a low mood and I tend to bully myself because I feel as though I’m not good enough (I have been influenced by bullies and passers by, with their sneers and comments etc). I would like to say that now I am dealing with it really well and I am leading as much of a normal life as possible but really, that is not the reality. I am coping worse than ever (not being helped by CRPS progressing further) but I am happy to say that I have now taken up wheelchair racing and speaking at the Burning Nights CRPS conference in November was really amazing. It felt amazing to talk in front of other sufferers and families of sufferers. It was extremely emotional but it just goes to show that life with CRPS isn’t easy and it isn’t all wipe your tears and move on, but with the support from other people, its amazing to relate to someone else. In the terms of treatment, nothing is really working for me. I am on a pain management programme although it is extremely challenging and requires a lot of dedication, determination, and hard work. I think I may have it in me, I’m just apprehensive because of my journey leading up to this point. Burning Nights CRPS has really helped me in terms of talking to sufferers and its helpful to tell people a website to refer to, rather than try to explain your life story in the middle of a shop (for example). If you are a sufferer or the family/friends of a sufferer, you are not alone and there are always people to talk to. Also, it’s not going to be easy, but I believe in you😊 and I know that’s easy to read but coming from a sufferer themselves, you need all the support you can get. If anyone wants to contact me, I have no issue with my email address to be given out because I know how important motivation is 😊Keep fighting!
Lisa DavisLisa is not only a volunteer for Burning Nights CRPS Support but she is now also a trustee for the charity. One of her main roles is social media so many people who attended the conference and who had contacted the charity had at one stage spoken to Lisa. Lisa’s speech about her CRPS journey left people very emotional and teary. Her journey showed how something as small as an insect bite at the beach could cause Complex Regional Pain Syndrome. Why not read Lisa’s journey with CRPS?
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