Where to get medical help in the UK

Smiling Doctor Wearing StethoscopeMy first route was to my own GP.  She knew nothing about EDS at all, but was mercifully willing to learn and is marvellous.  My daughters had varying experiences.  One of them had a local doctor at university who had EDS herself!  She was, of course, marvellous.  The other daughter had a local GP at university who knew nothing and told her she was simply a student who was out late at night and was reaping the results.  Totally useless and very frustrating.  The sort of doctor who makes you come home and cry your eyes out.  EDS is unfortunately still not generally known by most local doctors.

I then heard on the grapevine that rheumatologists were the people to see.  My GP referred me to a rheumatologist at my local hospital.  He was South African and had worked with Professor Peter Beighton (who pioneered the Beighton score as a primary diagnostic tool for hypermobility).  This was the first medical person I had met who knew more than I did!  He confirmed that I met the Beighton score criteria for hypermobility.  He then told me there was nothing anyone could do, and that was the end of that!  I was left with some knowledge, a partial diagnosis, no published literature I could find, and nowhere to go from there!

There was nothing else for it but to google.  Most EDS sufferers become adept at googling for information and end up far more knowledgeable than their medical advisors.  They are far more interested in their own bodies than anyone else is.  By 2013 a couple of hypermobility units had emerged in UK hospitals and a handful of books had been published.

There was no help offered on the NHS and no alternative but to go private.  In January 2013 my daughters and I were diagnosed by Prof Rodney Grahame (a rheumatologist who has pioneered work in hypermobility in the UK for many years.  He started The Hypermobility Unit in London in 1997), at the Hospital of St John & St Elizabeth in London .

 

the-hypermobility-unit

 

60 Grove End Road, St. John’s Wood, London NW8 9NH

http://www.thehypermobilityunit.org.uk/

Megabucks.  Before you rush for the phone and make an appointment, I ought to whisper that the visit cost £300 each for an hour’s appointment for a diagnosis.  We were then offered a physiotherapy consultation at, I think, £150 for one session.  We had only one each!  After that there was no follow-up and we again felt rather high and dry.  We had to think carefully before spending that sort of money – but there was nowhere else to go!   I thought it was worth it for a diagnosis I could show the doctor, and it helped to reassure me I wasn’t dreaming all this – the constant problem for those of us with invisible illnesses.  I also discovered I had POTS and other problems related to the EDS, which a non-specialist would not have picked up.

It is worth googling hospitals near you which your GP may be able to refer to.  In the last couple of years other hospitals have also claimed specialisms (I have no knowledge of these, and I have not seen any publications buy them in the way I have from the Hospital of St John & St Elizabeth).    Such as:

The Royal National Hospital for Rheumatic Diseases (Bath). NHS

The Royal National Orthopaedic Hospital (Stanmore). NHS

The Portland Hospital for Women and Children (London.  Has an outpatients’ programme for children, ‘Hypermobility and Pain Rehabilitation’). Private

For NHS genetic testing try: EDS Diagnostic Service London North West Healthcare NHS Trust tel. 020 8869 3166 email LNWH-tr.EDSLONDONOFFICE@nhs.net  I have been told by others that it is possible to ring up the clinic without a doctor’s referral.

Well-known Ehlers-Danlos specialists in the last few years are:

Professor Rodney Grahame CBE MD FRCP FACP
General rheumatology, hypermobility, Ehlers-Danlos Syndrome and performing arts medicine
Advisor to the Hypermobility Syndrome Association (HMSA)
020 7806 4060 (outpatients)

Dr Alan J Hakim BA MA MB BChir CCST FRCP
General rheumatology, hypermobility, ankylosing spondylitis and Ehlers-Danlos Syndrome
Advisor to the Hypermobility Syndrome Association (HMSA)
020 7806 4060 (outpatients)

Professor Qasim Aziz FRCS PhD
Gastroenterologist with specialist interest in hypermobility

Medical Board of Ehlers-Danlos Support (EDS UK)
020 7603 2267

Dr Hanadi Kaz-Kaz LRCP LRCS LRCPS MRCP MSc
General rheumatology, hypermobility, Ehlers-Danlos Syndrome and performing arts medicine
020 7806 4060 (outpatients)

Chief Medical Advisor of Ehlers-Danlos Support (EDS UK)

I have been told that Dr Pauline Ho is a rheumatologist at the Manchester Royal Infirmary and the Bupa Spire hospital in Whalley Range, Manchester.  She also has EDS herself.

I have been told that Dr Askari is a rheumatologist with expertise in EDS in the midlands. He is based at Oswestry Orthopaedic Hospital, but also sees patients privately at the Nuffield in Shrewsbury.

books images

The third book along, Hypermobility, Fibromyalgia and Chronic Pain, is a compilation of medical articles, some of which are by the above-named specialists.  I found this extremely helpful.  The fourth book, Living with Hypermobility, by Isobel Knight, is a personal account.

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