Chapel Allerton Hospital - Leeds

[Eloise]

I am now under Dr Tan and she is fantastic She is not really suppose to see out of area patients, as Leeds doesn't want to be a HMS specialist centre - but if you don't tell then she won't as I think she really likes doing the HMS/EDS stuff as well as the normal rheumy stuff.

[_Sara_]

Thank you for your reply, I am quite looking forward to going. Im not too far out of area, the hospital is only 13miles away from my doorstep Not quite sure what she is going to say or what I am going to ask. Its been years thinking about it and now its come around im baffled! To be honest I just want to know how bad its going to get and if there is anyway to delay it progressing. I doubt it so we shall we

[Rosie]

hi _Sara_

Unfortunately, no one can predict how bad any particular case is going to get, our bodies are unpredictable, to say the least! However, you should be given either referrals or suggestions for treatment and/or therapies that can help to improve your condition, and hopefully prevent things deteriorating too much. There are tings that can help, but sometimes we struggle to accces them, or to fit them in with the demands of our lives.
Hope your appointment goes well

Rosie

[mrsc2b]

Very dissapointed. I went to Leeds for my check up. I waited 2 hours for my appointment and it lasted 10 minutes. I got a prescription for a chilli extract cream. My GP wants me to stay in Leeds as I'm at the pain clinic too. I'm so frustrated. I travelled 2.5 hours on a train for 10 minutes with a doctor I'd never met because my new doc was running too late. Not happy.

[jayne]

I have an appointment in leeds on the 26th September. It will be my second appointment with Dr Tan this year. I will report back as to how it goes, hopefully it will be more productive than the last few appointments I have had recently at home.

[loon]

Hi everyone, quick question. I was a patient of Prof B before he retired and have since been given an appointment with another rheumy at Leeds, i found out it was a general rheumy and not one that dealt with HMS/EDS so i turned down the app. (i live in birmingham and can see a general rheumy on my doorstep without traveling to Leeds so there didn't seem much point). I am going back to my GP soon to talk about changing my referal to go somewhere else but am really unsure where to go, i think maybe London (uclh) would be best as there is a team of people there for EDS so not restricted to 1 person but then it is a huge and expensive journey. Does anyone know/recommend anywhere nearer Birmingham? Thanks Nikki xxxxxxxxx

[cinders]

Dr Tan in Leeds sees hms patients that were under prof.Bird. or there's Dr (mod edit - name removed) at Manchester royal infirmary. Prof.g in London is the best but I know my gp won't refer out if the area. I decided to stay on at Leeds for now even though I am in Manchester because the OT and foothealth department are so good and are used to us bendies. Prof b isn't there but all the experience and specialism still is. Hope that helps.

[loon]

Hi Cinders, thanks for that i have heard about Dr Tan but not sure how to get to see her. Also totally agree with you about the other support there, for me OT and physio were very helpful, the problem is when prof B retired they discharged me from both saying there is no point in me travelling just for physio (i would have as they were brill) What i actaully found out though was they were cutting costs and discharged me because i was from out of thier area. Wonder if i go back there if i would be able to see the physio and OT again? Just feeling a bit lost with it all at the moment with having no medical support to fall on (no pun intended there!). I know of a physio locally that does deal with EDS but they are private and i just can't afford that, I'm also desperate for new splints at the moment (which i used to get from leeds) but i'm seeing a local NHS orthotist in a few weeks time so will see how that goes! Thanks again, Nikki xxxxx

[cinders]

Hi Nikki I've heard mixed reports about all the so called rheumys in leeds and manchester. They tried to discharge me from leeds but I spoke to someone probably was Prof.B's secretary who is THE nicest and most helpful secretary I've ever had to deal with and she got them to keep me on and with Dr.Tan. It was a lot of calling though on my part and when I saw her for the first time I wasn't impressed but then she's still learning and i am probably not one of her worst patients. I know they weren't taking any new patients on though so i'm not sure what your next step is. I had the same problem with my daughters. My 10yr old and 5yr old were seen by Prof.B but only my oldest was actually under him. Although he agreed and did look at my youngest daughter when we saw him he didn't write anything in our notes about her so i had no firm evidence of a diagnosis. My girls are under BUPA and they agreed for them to see a peadiatric consultant locally for diagnosis but not management. They were then referred on to the Manchester Royal children's Hospital. Although the Manchester royal will refer for local physio and considering my oldest had a written diagnosis from Prof.B of BJHMS the peadiatrics at manchester royal (MRCH) said "But hypermobility causes no problems" To say I was fuming is an understatement. They probably think I'ma fussy over protective mother but I looked him in the face and said "Excuse me I have to disagree with you since myself and my sister have many problems" He then tried to tell me that without looking at our medical records he couldn't comment as we may have another diagnosis. Considering i had diagnosis of BJHMS (this was in 2007 before they stated its same as EDS3) my sister had EDS3 diagnosis just before prof.B retired. I'm still so angry over this as you can probably tell. Anyway back to the point I would see if your dr will refer you to either leeds manchester or london. You could call leeds and make out you didn't know you were being discharged and could they put you back into their system. I'd say it's worth a call at least. Good luck with it. It's so frustrating and so wrong that we have to fight for recognition and decent care. My gp won't give me anything stronger in the way of pain meds, i'm struggling with acid reflux and my vochal chords are wrecked. I know that london would be my best bet cos of the experience they have but i know my gp will say he isnt allowed to refer out of area. I'm hoping if or when i can see dr.Tan in leeds she will change my diagnosis on my records to EDS3 and also for my daughter that way we may get taken a little more seriously.

[loon]

I'm a little bit worried that as Dr Tan is just really learning about EDS and i am getting worse.....maybe thats not the best combination? I don't know I fully understand your frustration Cinders and it really annoys me that after all the years of work prof B put in, the b****y government wouldn't fund the clinic anymore. It's such a struggle to get the help we need even to just help with the daily basics. I did have a bit of success with physio and hydro at the royal orthapeadic hosp in birmingham but they would only treat one problem at a time (which was great for that problem bit not for everything else!). I am currently recovering from a hysterectomy so will concentrate on my recovery for now (best i can with no splints and rapidly deteriorating muscle!) and see what happens at orthotics in a few weeks time then i'll get back to the docs and try and get sorted. Thanks again for your help, Nikki xxxx

[cinders]

I finally have an appointment to see Dr Tan in leeds for myseld and my older daughter on 23rd April. I will update after that on how I find her. Very stressed at moment. i applied to teacher's pension scheme for ill health retirement and they have refused but their are errors in the details so I will be appealing!

[mrso]

Hi all

Just been to see my GP, who FINALLY told me he doesn't know much about what I have, and it'd be better to send me to someone who knows a lot about HMS/EDS. I told him I thought (but wasn't certain) that there were Hypermobility clinics in London, Sheffield and Leeds. He offered me a referral to Prof Bird's clinic in Leeds. Prof Bird has retired (I think?) but is his clinic still there? I'm panicking now because I can't find any info on the internet about it. Is it still there, or should I contact my GP and tell him I need referring elsewhere?

Thanks

[cinders]

There is someone there who took over from prof.bird but its not a designated hypermobility clinic and unless you're already in the system I was told they aren't taking any referalls. There is Dr Ho in Manchester but the list is at least 12 mths long. Hope you find someone to help

[Omega]

Hi

I'm considering to be relocating to Manchester area earlier next year.

I wondered about specialist clinic for Adults in Manchester. So this thread was very useful.
It made me wonder if it's realistic for me to relocate to North having a host of medical problems which started to get much worse over the years.
Does anyone living in North would need to come down to London to see specialists at all?

Thanks.