General Practitioners in Worthing, United Kingdom

I don't know how far you are from Liverpool, but there is a Dr Tom Kennedy who is a consultant rheumy at the Royal Liverpool Hospital, he can diagnose EDS and prescribe. I saw him a couple of years ago and he is very approachable, although I don't know about long term care, there wasn't much he could do for me as I'm an OAP. A call to the hospital to check he is still there may be advisable, and I think I had to be refered by my GP. I hope you can get him the help he needs. Good luck.

Get referred here by rheumy (GP cant do it) - they are great - its based in Children's hospital BUT is for ALL ages - they are fantastic and will ensure you are officially dx and then refer you to whoever you need to see http://www.sheffieldchildrens.nhs.uk/teams/ehlers-danlos-syndrome-service-team.htm

Dr Riley at Royal Manchester Children's Hospital, he cannot be found on the GP's choose and book system!! His colleague is Dr Alice Cheing both are rhumatoligists, his secretary is Linda. Very knowledgable team, physio's are Verna & Rebecca. They have taken over care for my son. Your GP will have too contact his secretary directly, other wise you will go through paediatric rheumatology, then you will go round in circles!!!

Wanted to say, after a long wait, my son saw dr Nellie Ninis today at st mary's hospital, london. She was wonderful - extremely attentive, listened to all I had to say openly, with no prior assumptions, etc. and extremely knowledgeable! i really appreciated her attitude and approach to my son's situation. She definitely treats the child/the problems as a whole - which is what is needed! I can't praise her enough. she is not a rheumatologist. she is a general paediatrician but because she has had loads of experience treating kids with HMS/eds who present with GI problems, allergies, dysautonomia, etc. (I.e. not just the joints/muscular skeletal problems), she is inundated with referrals. Her waiting list is very, very long. However, it seems there are plans on the drawing board for other hospitals to take on children with similar issues.

Sorry, meant Queen Elizabeth http://www.nhs.uk/Services/hospitals/Overview/DefaultView.aspx?id=1293

Yep same here Ashleigh. Physio told me, gave me 2 leaflets and a series of core strengthening pilates...after persisting, got referred to Rheumy. Good news is it's RA, bad news is, nothing we can do about the hypermobility. So depressing isn't it. Anyway, in theory anon person tou can get referral to a specialist if you can find one! http://www.nhs.uk/chq/Pages/1094.aspx?CategoryID=68&SubCategoryID=158

Those are my main problems too! I live in the north west and I am under the care of Dr Ho at Manchester royal infirmary, not sure if you have to be under someone else at that age tho. She is a rheumatologist.

I was led to believe there is an EDS clinic at the Hallamshire in Sheffield. You'd have to double check that though.

BIG hug! sigh...everything to do with hms...takes time and patience...hakim is brill, worth a wait. but...I m not sure if he practices at st barts, he is a lecturer there but...so maybe double check with your gp if that referral happened. if you could afford it, there is a private hypermobility clinic where hakim works too (and you get seen much quicker than via the nhs) http://www.thehypermobilityunit.org.uk/index.php/dr-alan-hakim i n the meantine maybe visit the hmsa website at hypermobility.org and their forum and you ll find a wealth of info, tips, experiences, support.

I'm due to go to RNOH rehabilitaion for chronic pain/fatigue incl HMS. I was referred to a specialist rheumy there who is very knowledgable. Firstly my GP referred me to HMS clinic at UCL & they referred me onto stanmore. There is help out there & hope you find it

Ask your GP for a referral to your nearest Hypermobility Clinic. List of UK Clinics are available on our website: http://www.hypermobility.org/clinics.php

Hunter Ashleigh Gust - Read through this thread.

Perhaps worth trying Gelclair http://www.gelclair.co.uk/gelclair/en/home free sample available via the website. It was originally for oral mucositis & ulcers from cancer treatments. It is available on prescription. Also, has acid reflux been considered esp if you get sore throats too?

There is only one specialist in Scotland and that's Professor Ferrell in Glasgow. Details are on our website - www.hypermobility.org/clinics.php

Prof. Ferrell is 'the man' in Scotland. Some do try to get referred to London but it is more difficult.

https://www.kooth.com/ brilliant service to talk to a councillor, whilst waiting for camhs or any other service.

Malcolm Bateup?

There is lots of experience and advice available on our forum www.hypermobility.org/forum

Please see the FAQs towards the bottom which explains how to get the best from # RecordsAccessAndUnderstanding http://www.htmc.co.uk/pages/pv.asp?p=htmc700

@lula- maybe printing this off for your gp might make him take you more seriously...http://www.dwp.gov.uk/publications/specialist-guides/medical-conditions/a-z-of-medical-conditions/joint-hypermobility-syndrome/

Hi Kimberley, don't know if you are in a position to but I went private to get my daughter diagnosed by Dr Hakim at Hospital of St John and St Elizabeth at St Johns Wood in London, where they have a private hypermobility unit. He is amazing and worth every penny. He sent a fantastic letter to our GP detailing all aspects of the condition and what he had advised to be done. Now our GP does what we ask most of the time. Good luck

Dr Cerys Reece- Dillon in Cardiff is fab and has had training.

They would be sensible things to do, but it's complicated. My GP is reluctant to refer me anywhere as I have seen too many people already and the last time I went to A&E they discharged me in severe pain and floods of tears. I can swallow water and am in no immediate danger so they can't do anything. I complained about it last time and both GP and hospital said they did everything they could. The head pain partially responds to diazepam and I think the swallowing problem could be silent reflux. Last time another GP gave me omeprazole to try but it caused diarrhoea and depression, both of which went away when I stopped taking it, plus it didn't really help and it interacts with diazepam.