We have been informed that St John and St Elizabeth Hospital is receiving referral letters from GPs to the Hypermobility Clinic, with the GP and patient thinking they are referring for an NHS appointment. The Hypermobility Clinic at St J and E Hospital is a Private facility.
GPs must refer to the relevant NHS Trust. A letter of referral to St J and E Hospital cannot be converted to an NHS referral. This has created a lot of additional admin for the team at St J and E Hospital as they have to write back to the GP to advise that the referral cannot be accepted.
If you are seeking a referral to a Hypermobility Clinic please see our list of recommended clinics and the referral process here
One of our members, Fran Smith, features in this episode of BBC Ouch, filmed by HMSA Patron, Kate Monaghan. Fran has EDS and has overcome a number of obstacles this year which threatened the possibility of starting at Oxford University this term, including having spinal surgery earlier this year.
You can watch the video on the BBC Ouch website by clicking the following link:
Fran is such an inspiration to all that if you put your mind to it, and want something badly enough, you can achieve your goals. Well done from all at the HMSA!
AllTrials campaign have asked us to share the following news:
Yesterday the European Medicines Agency (EMA) agreed to scrap the restrictions on sharing data with clinical researchers. Thousands urged the EMA against secrecy by writing letters and sharing the AllTrials Twitpic. They listened.
As Dr Ben Goldacre said, “The EMA only holds clinical study reports for a small proportion of all the trials done on all the medicines we use today. We need a radical overhaul giving retrospective transparency on all clinical study reports from industry, and clear transparency on methods and results for all trials done by academics.”
When we get involved things change. Please help get more people involved in the campaign to keep this momentum up, share/follow news on Twitter using #AllTrials and on Facebook. Ask 5 people to sign the AllTrials petition and donate to the campaign if they can: http://www.alltrials.net/news/european-medicines-agency-votes-on-clinical-trial-transparency-today/
Take a selfie, join the campaign!
Supported by Pain UK, Fibromyalgia Association UK and the Hypermobility Syndromes Association.
Be part of our effort to fight the pain all over the world and to help sufferers. All you need to do is take a selfie!
ISAL Foundation (Italian Pain Foundation) are collecting as many selfies as possible from all over the world. They will give us power and strength to engage with national and international institutions and stakeholders to fight pain. It’s very easy to take part, just follow the instructions and examples below:
1) Take a picture of yourself holding a piece of paper with “I’m against Pain”
Join us, we need your selfie!
One of our Group Leaders, Mel Howram, has sent in her family’s story about finding out they have Hypermobility Syndrome, in particular her youngest child, Charlie, and their journey to diagnosis and beyond. As part of Jeans for Genes we would also like to share Charlie’s story with you.
I am Melanie, I am 36 years old, I am Mum to Charlie 7 as well as a daughter 17 and an older son 15. They, my husband and I all have Hypermobility Syndrome, something we never knew and probably would have never known if it wasn’t for Charlie.
Charlie was born a happy healthy baby. A family history of developmental hip dysplasia saw Charlie rigorously tested at birth. With results all clear we were very pleased and everything else went well until Charlie was around 6 months old. At this time when I sat him on my hip and I could hear the tell-tale clunk of hip dysplasia. Charlie was sent for Xrays and the hip problems were confirmed it was popping in and out, but it was decided to take no further action. The next thing that was a concern to me was the time it was taking Charlie to walk, 12 months came and went then 13, 14, 15 and so on. It wasn’t that Charlie couldn’t walk, we knew he could take steps independently, he just chose not to. At the time I put it down to the fact that he had two much older siblings and that they were carrying him therefore slowing down his progress.
Sometime between 17 and 18 months Charlie began to walk independently. By the time Charlie was two problems began. He would often refuse to walk and my husband would end up carrying him. He would also wake at night in pain. We put this down to what most people referred to as growing pains, and got on with things.
It was shortly before Charlie turned four that he spent some time with his Grandma on the beach. She noticed his feet and ankles weren’t right and was very concerned about it. His feet were most definitely flat. But so were my husbands and my other sons, it wasn’t out of character for our family so we hadn’t picked up on it. But mum’s concern prompted us to visit our GP and a referral was made to an orthotist. Our appointment came and what a fabulous man, he was wonderful with Charlie and straight away he knew the problem. Charlie was very flat footed and had ankle valgus, this meant his ankle had kind of fallen over and it wasn’t inline with his leg. This was the very first time in my life I heard the word hypermobile and had we had a different orthotist I’m not sure we would have ever heard the word or certainly not for some time. We left the appointment with custom made insoles and special supportive boots on order.
I knew then that Hypermobility was a word that I needed to investigate further and get the knowledge I needed to understand the problems Charlie was having. Thank the world for the internet as I wouldn’t have known where to begin with my quest for knowledge had it been several years ago. Google led me to the website and further still the forums of The Hypermobility Syndromes Association. It was here that the many jigsaw pieces of not only Charlie’s life but also my life fell into place. It was all there, almost every symptom and characteristic met with how Charlie was. I am a strong believer in every aspect of my life that knowledge is vital for understanding. So I immediately signed up to the HMSA forums and connected with other sufferers and parents and my journey along a steep learning curve began.
From here everything became a whirlwind. From a visit to our GP came a paediatrician, physio, occupational therapy and a wheelchair assessment. Physio confirmed the diagnosis, Charlie was extremely hypermobile and an intensive course of physiotherapy began. As things sank in we realised how much our lives had changed. Our regular days out had stopped because Charlie just couldn’t walk or keep up and had long since outgrown his buggy. Nights were broken and tears and pain were frequent.
Despite all the interventions Charlie just wasn’t getting better, he was going downhill fast. Everyone I spoke to from a health point of view, apart from our orthotist, would tell me that hypermobility is very common in small children and that he would ‘tighten up’ as he got older. But I wasn’t convinced; Mums just know that something is more than a flash in the pan. Plus our orthotist told us from day one that his work would by no means be a quick fix, we were looking at a life long treatment and management plan. This and his support along with my new found support at HMSA pushed me on in my research.
As my learning continued I realised that not only Charlie was hypermobile our whole family was, all 5 of us. The things that Charlie did we all did. Then came the big question, if I hadn’t tightened up at 34 and my husband at 38 daughter at 17 and son at 15, what led these professionals to presume that Charlie would tighten up when he was the worst affected of us all? It was the confidence in my knowledge from HMSA that allowed me to question my paediatrician, I actually reached a point that I felt my knowledge of hypermobility was greater than his. I knew that the best way forward for Charlie was a formal check for Ehlers Danlos Syndrome at Sheffield Children’s Hospital as soon as possible. I felt this way because I knew that the key to quality of management laid with the treatment and knowledge that Charlie himself needed to be able to manage his own condition.
At our next appointment I asked for the referral. Our paediatrician was not keen I had to argue our case. At 4 years old he wanted to wait to around 11 years. I explained my feelings, presented a good case of the earlier the better and walked out with what I wanted despite the paediatrician clearly not wanting to send him. But as a parent I was victorious and I knew this was what was needed and was best for Charlie.
The December after Charlie’s 4th birthday we saw Dr Sobey in Sheffield. Vindication came! Charlie had EDS type 3, and my husband and I were diagnosed in the same appointment. Genetically I am told it is very rare to have both parents affected. Normally it would pass down one side of the family only. Not only would Charlie have a contact with a geneticist throughout his life, so would our whole family. So far a gene hasn’t been identified that can diagnose hypermobility but research is ongoing and with 5 of us affected we could be used in future in the quest for finding this illusive gene.
After this appointment began what for loss of a better description I can only describe as a grieving process. Our child wouldn’t have the life that we had envisaged for him, things from here would be very, very different and Charlie was going to have a journey and a steep learning curve of his own. However, through my knowledge I secured a path to the best possible care for Charlie and we now have a multi-disciplinary team caring for Charlie at every level. We have been very lucky with his care, but sadly Charlie continues to plateau and then deteriorate further.
At 7 we are facing many challenges, Charlie has developed further problems. He has marked lumbar lordosis and suffers regular subluxations. The lumbar lordosis makes finding clothes to fit very difficult and I have become a master of length alterations. He also has chronic amplification syndrome which has meant starting Charlie on off licence medication. This is a constant worry and some of the side effects are unpleasant, but we forge on because it is in Charlie’s best interests. Charlie also has high pain and fatigue levels and at worst these cause utter meltdowns and he becomes very angry and physically aggressive at times. However he has a psychologist working with him within his time to help this and he is already learning about managing the boom bust cycle, something that he will need the rest of his life.
Through Charlie’s diagnosis I am also getting the care that I need as I am affected badly too but could never put the pieces of the jigsaw together before that point. It has also resonated down through the family and things make sense to extended family and again their care is also improved now. Had I not pushed forward for referral to genetics who knows how things would be now or how much suffering Charlie would have experienced.
I know that the future will be tricky for Charlie but not impossible. We stay positive and focus on good things and the fact that everyone has something they can be good at no matter what. We take a day at a time and these days I feel empowered and i am happy to challenge our specialists if I have confidence in what I feel we need. Knowledge was the step, the key was the HMSA and the door it opened was genetics to a new pathway for Charlie’s future.