EDS Leeds

7/02/2010 11:38:00 am BenefitScroungingScum 8 Comments

I'm very sorry to have to inform people that Professor Howard Bird will officially retire at the end of this month, 31st of July 2010. Despite efforts by the HMSA and several individuals with EDS Chapel Allerton hospital do not intend to replace Professor Bird. This means that from August onwards there will be no specialist provision for HMS or EDS patients in Leeds. 

The planned clinics in Gateshead and Manchester are still to go ahead, but it will take many years to build up the kind of expertise there was in Leeds. 

Thank you so much to Professor Bird, his hard working, ever patient secretary Lesley and all the rest of the staff at Chapel Allerton for all the support they have provided to those of us with connective tissue disorders over the years.


alhi said...

That's a real shame. My rheumatologist is retiring as well so I know (slightly) how you are feeling. It's not as bad as you as anyone can take over my care, but it's not only about care, it's about the relationship that a consultant has with his patients, how s/he knows their nuances in behaviour so that when they say the pain is quite bad, s/he knows it's bloody awful! I hope you get a good rheumatologist to take over your care: one who listens to you and learns from you.

Alhi: Thanks honey, it is indeed a shame. I feel really sorry for his secretary too who's worked for him for years & now will be transferred into a very different admin role.
I'm currently 'inbetween' rheumatologists locally so the burden will fall on my GP.
Hope you get a lovely new rhuem to look after you BG Xx

Nemonie said...

This sucks. Back in December last year, I tried to get my GP to refer me to Prof Bird, but he insisted on going through the local Rheumy first. Now I have little chance of further referral as I am supposedly diagnosed correctly (with Fibromyalgia, hypermobile joints and chronic pain syndrome!!!). Yet my rheumy keeps focussing on the fibro when I keep telling him its my joints that are the main problem, to which he responds that I'll become less flexible as I get older! I'm 29, my mum could still do the splits at 60. I really hope that you find a good rheumy who is willing to listen and learn from you.

Nemonie: Whereabouts in the UK are you? There may still be other ways to get properly diagnosed...

I'm fairly lucky in that my main consultant (not a rheumatologist) Dr Freak Clinic is also the medical director of the whole hospital. He's a sensible, enlightened man who says when I come to see him he throws away everything he learnt at medical school & starts again with a completely open mind & view that very bendy bodies just work differently to 'normal'. Having said that, he relies on me to provide all the specialist knowledge about EDS as does my GP...but at least they trust my judgement, it would be terribly difficult if not!
There is also a rheum at the local hospital who's diagnosed a few EDS'ers I've sent that way...I'm hoping he'll eventually be my main consultant.

This sucks, but on the upside, maybe this new Manchester clinic will mean a proper diagnosis, for both me and my sister.

I'm currently having a horrible time with local rheumatologists who insist on only looking at my wrists as they're my worst joints, then shaking their heads and going 'I don't know what's wrong, have some splints', and my sister's one diagnosed her with hypermobility syndrome but refused to give her a diagnosis of EDS on the grounds that he didn't want to 'label her as disabled'. *sigh*

Anonymous said...

I'm sure he will be missed, he certainly seems to have a wonderful reputation amongst his patients.

As a fellow EDSer I can understand your concern for the future. My current EDS treatment seems to consist of my GP providing sympathy and opiates and my local A&E dealing with the rest. It is not a great situation!

Nemonie said...

Hi Bendy, I'm based in Sheffield. What's really annoying is that there is a specialist centre for EDS based at the children's hospital here. But they only accept referrals from rheumatologists and only for complex cases. I think mine is pretty straight forward EDS-hypermobility. I'm hoping that I can persuade my GP to refer me to the clinic at Manchester once it gets up and running. Or save up to go and see Prof G privately.

Lankylonglegs - Jo said...

I am stuck now too, my Rheumy still insists that there is no difference between JHS and EDS, despite my pointing out to him that JHS doesn't have a variant that can kill before you are 50!

My stretchy skin baffles him too, he thinks it's "too much skin creams" that have caused it to be extra pliable, only problem is I've never used a damned skin cream in my life! Not even so much as a moisturiser on my face.

I have never been officially diagnosed but have ALL the normal symptoms, plus a few rarer ones and the skin issues too, my GP is very nice, she happily listens to me ranting and will gladly supply whatever I ask her for, (not that PK's do anything this far) but at least I have her.

Chances are I will never get a correctly typed diagnosis but I guess that isn't really the end of the world...now all I need is to get this damned shoulder back where it should be...and find another bag of frozen peas.