I have written my reply letter answering their questions. I have also included more information on my situation in the hope that it explains why i need to be seen by Prof Bird and eventually the Gateshead specialist rather than a local specialist. I am also sending a copy of the letter to my MP to keep him informed of what is happening. Here is the extra info I have put in the letter in case anyone else recieves a similar letter from their PCT(hoping people can reassure me I have responded appropriately)):
'To give you more background to my situation, I was originally referred to, and diagnosed by a rheumatologist at James Cook Hospital, Middlesbrough in 2007 by my previous GP after years of being told there was nothing wrong with me. The GP refered me in the end after I begged for a referral and did so believing that the referral would result in confirming there was nothing wrong. However, the specialist did not understand the complexities and severity of the condition and did not offer me any treatment. My condition deteriated further as a result of receiving no treatment. (which is a very common situation and why so many patients eventually request referral to Prof. Bird).
My condition has continued to deteriate and I now have osteoarthritis in my lower spine as a result of the hypermobility syndrome. I believe that I have developed arthritis much sooner than the normal hypermobility progression due to not receiving any treatment until I first saw Prof. Bird in December 2009. I am concerned that the arthritis will spread to my other joints again due to receiving no treatment until last year. When I was originally diagnosed at James Cook Hospital I was able to walk fairly well and led a pretty normal life. I am now a wheelchair user due to the level of deteriation of my joints. I also now require a lot of support to carry out daily tasks such as dressing, bathing, shopping, cleaning and preparing meals and am currently in the process of having a care package set up by social services. I am not able to work now and spend a great deal of time bedridden due to the pain and exhaustion related to the condition. When I was originally diagnosed I was told that the condition only really causes bendy joints and does not lead to inability to walk, does not cause fatigue and does not cause severe pain. This is why I was offered no treatment at that time and why I later requested a referral to Prof Bird who confirmed that the problems and symptoms I have are a result of the condition. I believe that effective treatment at the time of diagnosis could have helped to reduce the level disability I have now. Again this is a very common situation for a lot of people with the condition and why it is so important that we are seen by experienced specialists and why the closure of Leeds clinic is worrying.
I received a physiotherapy assessment at the Leeds Clinic and chose to have my physiotherapy treatment at University Hospital of Hartlepool rather than Leeds so that I could be seen regularly. I also want to help local practioners to learn more about the condition through me in order to help the growing number of people being diagnosed with the condition in Hartlepool. I am very happy with the treatment and understanding I receive from the physyio department at Hartlepool as a result. I am seen by a senior physiotherapist at the request of the physiotherapy department at Leeds as people with Hypermobility Syndrome should only be seen by senior therapists. I had seen a newly qualified therapist at Hartlepool in 2008 after I was originally diagnosed. My gp refered me after a bad dislocation to my shoulder at my request as I was not satisfied at not being offered any treatment when I was diagnosed. However I was discharged after 3 sessions as the therapist believed that physio wasn’t going to help and that I was wasting my time. This again is a very common occurrence for patients and is why we are willing to travel to Leeds to see specialist therapists. I was very worried that if I was referred to Hartlepool physiotherapy again, that I would be discharged due to lack of knowledge of the condition but was reassured by the physiotherapist at Leeds that they would only refer me to Hartlepool if they could guarantee I would be offered appropriate long term treatment. The therapist I see now has a great deal of knowledge of the condition and I am very happy with his sensitivity and approach.
I also received an Occupational Therapy assessment at the Leeds Clinic and have seen the OT at Leeds twice. I am aiming to ask for my occupational therapy treatment to be referred to Hartlepool also, again only if my OT is confident enough that Hartlepool OT department has sufficient knowledge and can guarantee effective long term treatment.
I am hoping to be referred to the specialist at Gateshead after my 2nd and final appointment with Prof. Bird in June. The specialist at Gateshead also specialises in Hypermobility Syndrome, like Prof. Bird, and is aiming to open a specialist clinic. He also has Hypermobility Syndrome himself which makes him even more understanding to the serious effects to social and quality of life that the condition has. I would be very worried if it was decided I would be referred to any other specialist, especially within the tees PCT as I know from mine and other patient’s experience that there are simply no Drs in this area who have the level of knowledge and experience of the condition needed to be able to offer effective long term treatment. I am however more than willing to offer my PCT and DRs within it, information and personal experience of the condition in the hope that in the future, patients can be offered effective treatment within the Tees PCT.
If you would like further information please do not hesitate to contact me. Another great source of information on the condition and the concerns regarding the closure of the Leeds clinic can be obtained from the Hypermobility Syndrome Association who are heading the campaign to keep the Leeds clinic open. A great deal of Prof. Bird’s patients, including myself, are members of the association and it is through them that we discovered Prof. Bird’s expertise resulting in our requests for referral. The Association can be contacted at:
49 Orchard Crescent
Tel : 0845 345 4465www.hypermobility.org