Bad experience at London C of E?: Has anyone... - Behçet's UK

Behçet's UK

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Bad experience at London C of E?

cpops profile image
cpops

Has anyone been unhappy with their care there? Have you had conflicting opinions from them? If so how did you deal with it?

I was unhappy with my care there and do not wanna t to go back. Does anyone have a recommendation of a Behcet’s specialist not linked to that clinic?

Thanks

12 Replies

Funny as when I was there I had several people say they were unhappy yet nobody willing to speak out. Nothing will change unless you stick together and speak out about mistreatment and poor standards of care.

VickiOliver profile image
VickiOliver in reply to cpops

Talk to Tony at the Behcet’s society. I had a conversation with him about an experience I had with a nurse there. He was following up on a few people who had had similar conversations.

cpops profile image
cpops in reply to VickiOliver

Thanks Vicki. Is that the guy who goes to the Clinics?

VickiOliver profile image
VickiOliver in reply to cpops

No someone different. The Behcet’s society is probably the best port of call. All our experiences are very different and if you feel really unhappy it makes sense to get support. I hope you can feel better about it all x

cpops profile image
cpops in reply to VickiOliver

Thanks for your help and advice x

I can’t seem to get even seen there, last week I couldn’t talk and was stuttering as it’s been in my nerves, caused memory issues, damaged my bowel. GSTT day I’m too complicated for them and need to be seen in the specialist centre. My GP is worried and chasing them. They lost two referrals one from January, I’ll have my first appointment in Mid July. 6 months later. It’s had a debi’s tasting impact on my life and Guy’s won’t give me the TNF as they say that the C of E gets a the money for it, meanwhile I’m left on 25-30 mgs of prednisone for months.

cpops profile image
cpops in reply to TomTomC

So sorry to hear that. Which dept are you under at GSTT? What problems do you have with your bowel?

Have sent you a msg

I go to the London clinic and havent personally had any problems. But i know there are clinics in Birmingham and Liverpool(I think)? they have different staff there which may be better for You? X

cpops profile image
cpops in reply to Mlee0258

Many thanks for your advice x

Jules6663 profile image
Jules6663 in reply to Mlee0258

Very hit and miss at Birmingham for us as well. New bowel lady last time was awful. Was told be seen in 3 months which was Feb was then sent an appt for June which we couldn’t make now July.

cpops profile image
cpops in reply to Jules6663

Sorry to hear that. What GI problems have you experienced?

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