Saturday, February 20, 2010

Save our bendy clinic!

The much loved, very special bendy person specialist, Professor Howard Bird retires this year. He is based at Leeds Chapel Allerton hospital Prof Bird runs the only designated EDS/HMS clinic in the north of the UK. Leeds Teaching Hospital NHS trust does not intend to continue this service once Professor Bird retires.

It's no exaggeration to say that without the likes of Professor Bird, myself and many other bendy people would not be here today. Prof Bird provides the kind of specialist input that is vital for bendy people, and almost impossible to find, not just in the UK but throughout the world.

Please take a moment to sign the petition supporting the continuation of a specialist Ehlers Danlos Syndrome and Hypermobility Syndrome service at Leeds Chapel Allerton. After that, cheeky though it is, if you could forward it to anyone you know, asking them to sign I'd be eternally grateful.

15 comments:

Lankylonglegs said...

Signed sealed and delivered :o)
instead of closing clinics they should be planning new ones. Typical NHS.

madsadgirl said...

I've signed it BG. I don't personally know anyone with EDS/HMS but I have virtual friends like yourself, Achelois, and Steph so I know about it and the problems that you all face. I wish you success and hope that they will see the error their ways.

MSG

bendy rebel said...

I've signed it and forwarded it. I were hoping to get a referral there once I've had op to get my shoulder put back together but it may well be gone by then :( Petitions don't usually seem to make a difference but at least by signing it we can say we tried

BenefitScroungingScum said...

Thank you all

@bendyrebel If enough people sign/kick up a fuss Leeds will employ a new rheumatologist with a special interest in EDS. Ultimately it'll be in their financial interests to do so cos PCT's pay so much more to send ppl out of area.
Re shoulder surgery, has anyone advised you that it's pretty much contra indicated in EDS?

Achelois said...

I had already signed this BG. Despite not really using the forum much these days as you know.

In all honesty what with EDS being so rare despite everyone's best intentions with the petition etc. my feeling is the PCT will not take much notice and a rheumatoligst with a special interest in something much more well known will probably replace Prof B. Sad I know but the cynic in me can't help but think that.

If they employ a decent rheumatologist they should have more than a passing knowledge of EDS! Thats how its supposed to go anyhow.

Well done you though for doing your bit to get more signatures on the petition.

xoxox

cogidubnus said...

Signed and submitted... well done for alerting us...god bless

Fire Byrd said...

Signed and will send it on to my friend, a physio who is one of the countries top ones dealing with rheumatoid stuff.

Fire Byrd said...

hey BG cause I'm gormless ( no comments, thank you!) can you email me the link to the petition as I can't sort it.
xx

BenefitScroungingScum said...

FB: Thanks love, email sent, did you get it?

Cogi: Thank you! How are you dear?

Achelois: I saw the petition on one of the facebook groups
Prof Bird told me that if there is enough fuss made the trust will employ someone with a special interest in EDS, after all, it doesn't cost them anything financially to do so and may well be in their best financial interests as they can charge the PCT's more. It's the hospital trust who make the decision on this, the PCT's won't be involved. As we all know most rheumatologists don't have even a passing knowledge in EDS, so this service is vital, especially for those too far away from London. Losing the inpatient rehab beds, even though there are only a few in Leeds would be disastrous.
Defeatism will get us nowhere ;)Xx

WendyCarole said...

all signed

Dave the Dog said...

Signed

steph said...

Done!

Yet another speciality that's unavailable in Ireland :-(

Unless someone can tell me otherwise?

bendy rebel said...

the nice shoulder specialist who was the first one to realise i'm bendy has warned me that the surgery is less likely to be successful because of my EDS but after a year of torture (physiotherapy) which made it worse he said that really I had two choices. I could just put up with it being dislocated almost all the time or I could have surgery and hope it works. I were meant to have the op over a year ago but started having probs with my heart so it was put on hold until that was investigated but the results of the tests were lost, still are lost and my hearts settled down so I'm gonna go for it. If it works great, if it doesn't well that arms pretty much useless already so I've not got much to lose

BenefitScroungingScum said...

Wendy, Dave and Steph thank you all x

Bendyrebel: I've had many, many shoulder surgeries, all failed and more importantly all left me with increased levels of overall disability not just shoulder problems. The surgeries increased pain, decreased function/movement and caused far more dislocations as the tightening process unbalanced the shoulder. My experience is that a bendy shoulder left to dislocate at will is far, far less painful than a post op bendy shoulder. Also you might want to check what the surgeon intends to use to suture or staple inside the joint as I've found nothing holds, it'll rupture out of the bone causing further damage and more pain. Not sure what or who did your physiotherapy but it's the only thing that significantly improves things for us, it's also very possible to do on your own if you can't get physio input.
Having said that I really hope you have a more positive experience with surgery than I, but if you've not already seen it check out the shoulder surgery thread on the hmsa boards. Good luck Xx

steph said...

I back you up on what you say about post-op bendy shoulders.

I had murder with mine after the ligaments were shortened to prevent recurrent dislocation (over 20 years ago).

Eventually the metal screw used to fixate the shortened ligaments, pulled out of the bone and had to be removed.

The surgeon said he'd never in all his years of fixing shoulders, seen anything like what happened with my shoulder postoperatively (neither he nor I knew about my EDS then).

It took about two years for the pain to settle and it's been very good until recently and now it's very inflamed again but I can't face doing anything about it!