Friday we left Bristol to head up to Hothorpe Hall in Leicestershire for the HMSA residential. The journey to the residential was pretty slow taking a lot longer than it should have done. Being stuck in a car for hours in 30 degree Celsius heat is not good for someone with POTS. There had been an accident on the M5 and what should have been a 2.5hr journey became a 5hr journey.
The residential started off well with a talk by Isobel Knight talking about her books; A Guide to Living with Hypermobility Syndrome: Bending without Breaking and the one that is due to come out next year. She also talked about Bowen Technique and her work raising awareness of HMS/EDS-HM. It was a brilliant introduction to the conference and the themes of moving forward and staying positive.
Saturday started with a talk from Dr Andrew Lucas (Andy) the Consultant Lead Psychologist from the Rehabilitation Programme at RNOH Stanmore. He talked about his role in the psychological aspects of the rehabilitation programme.
After Andy was the talk by Dr Helen Cohen, Consultant in Pain Management at RNOH Stanmore also. She did a talk about the pain mechanisms in hypermobility, the chronic pain cycle and how they attempt to deal with it at Stanmore. It was a very interesting talk about the role of pain as an evolutionary defence. Parts of the talk were the same from the last residential but there were some new points in there so it was worthwhile sitting through it.
The next talk was from Julian Walker of the Genetic Alliance about the importance of user participation and the role of the Genetic Alliance. I had heard of the Genetic Alliance before but I was unsure of what they did. I was surprised that they represent over 150 charities and they are involved behind the scenes to do with policies regarding genetic conditions. Having a look on their website they have a lot of information available.
Rosemary Keer's talk was about Joint Protection, exercise and HMS. She talked about the structure of joints and the importance of correct posture and the negative effects of incorrect posture. She spoke about joint control, proprioception, exercises and braces, splints and supports. This was the viewpoint of a physiotherapist and she used plenty of practical examples getting the audience to try different exercises and stretches.
I missed the majority of Dr Jane Simmonds's talk as I was flagging a bit and had to go lay down. The conference room at Hothorpe Hall was very hot! Several people were flopped on the floor during a lot of the talks. I kept having to lay down just to stay conscious.
Dr Jessica Eccles (Clinical Fellow in Psychiatry, Neuroscience, Brighton) did a very interesting talk about brain structure and the prevalence of psychiatric symptoms in hypermobile individuals. This was probably the talk that I found the most interesting as some of the other talks were about stuff that I had heard a lot of before. She mentioned that there seemed to be a link between Autism, ADHD, Dyspraxia and hypermobility. This is something that a lot of us had observed anecdotally in the groups and on the forums that there were quite a few people that had both HMS and an ASD. It would be interesting to keep an eye out for future research regarding this.
Before the party there was a wheelchair dancing display by the wobbly wheelers with an appearance by Dr Hakim as a Robot. It was a lot of fun and I thoroughly enjoyed it. In the evening was the 20th anniversary celebration party! It was a lot of fun! There were a lot of people in wheelchairs dancing and we even had a wheelchair conga line that was 14 wheelchairs long. I laughed so much and it was refreshing to just have some fun. Even the medical professionals joined in with the fun and one of them got accidentally walloped in the face and came out with a fat lip, poor lady had to go do a talk today at the EDS-UK conference! I'm sure plenty of pictures will appear on facebook or the internet in the coming weeks.
Sunday started with a talk by Dr Adam Farmer (Consultant Neurogastroenterologist) about the need for funding of gastro issues in hypermobility syndromes. It was interesting to have the gastro issues explained in an accessible way as a lot of the information out there tends to be aimed at other medical professionals. It helped me understand my own gastro issues a bit more.
The wonderful Hannah Ensor, Author and creator of the stickman products and Patron of the HMSA for children and teens. She talked about adapting to life with HMS and her involvement with the HMSA. I thoroughly enjoyed it, and made me think about my own thoughts about HMS.
Eloise Summerfield did a talk about medication and answered a lot of peoples questions with regards to medication. It was very interesting about how the drug companies measure the effectiveness of pain medications, that this is measured by the amount of people who experience 50% pain relief not 100%. It was surprising which medications came top of the chart with regards to effectiveness. She reiterated what a number of the other professionals had said about not going on strong opioids such as morphine as they don't do a lot for chronic pain and come with a lot of side effects.
The event ended with a talk from Dr Alan Hakim about patient experience survey results. There were a few pleasant surprises in there but much of it wasn't a surprise with regards to the delay between first presenting with symptoms to actually getting diagnosed was for a lot of people 10+ years. He talked about how services are commissioned and emphasised the need for regional multidisciplinary teams rather than having one super centre based in London, that there needs to be a lot more change at the local level.
The slides from the presentations will be available from the HMSA soon and they were also filmed and the DVD will be available to buy too. There are also slides and a DVD from the 2010 residential available.
All in all I had a fantastic time while I was there! Even though I felt like death warmed up I still had a wonderful time. I would like to thank everyone who put in the hard work to make the residential fantastic and I look forward to the next one.
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