Continuation of the Hypermobility Syndromes (HMS) and Ehlers-Danlos Syndrome (EDS) Services at Chapel Allerton (Leeds Teaching Hospitals NHS Trust)

PETITION FOR THE CONTINUATION OF THE HYPERMOBILITY SYNDROMES (HMS) AND EHLERS-DANLOS SYNDROME (EDS) SERVICES AT CHAPEL ALLERTON (Leeds Teaching Hospitals NHS Trust)

As you are all aware Professor Bird retires after serving the above community of patients at the end of September 2010. Our information indicates that the Leeds Teaching Hospitals NHS Trust do not intend to continue with the service that our community accesses. So with the loss of Prof. Bird and the highly skilled multi-disciplinary team, the existing and 300+ new patients a year, will no longer have access to what is widely recognised as a designated HMS/EDS Clinic.

This will have a devastating effect on the needs of those of us who access the current service in Leeds. Additionally this will lead to an increase in referrals to the other three existing designated HMS/ EDS Clinics in the UK, namely Glasgow, UCH in London and Great Ormond Street Hospital in London. There is no doubt that many of us despite the difficulties in travelling and the extra cost will wish to attend a specialised service in a designated clinic, (especially considering the difficult journey that the majority of us undergo to gain a diagnosis in the first place). It is also apparent that this patient group in fact needs more designated clinics, run by knowledgeable and skilled staff who are up to date with research and who participate in research in attempts to best indentify how to manage and treat what can be a condition which significantly impacts on a patients physical, emotional, financial, family and social lives. It is not in the interests of this patient group to attend ordinary rheumatology appts, so with that in mind we are asking that you all sign this petition for the following reasons;

1.The continuation of a fit for service fit for purpose designated service/clinic for people with HMS/EDS at Leeds Teaching Hospitals NHS Trust.
2.The need for more designated clinics for people with HMS or EDS.