Hi, my name is Jean and I have recently been appointed as Health Care Support Worker with the Bechcet's Syndrome Society, and will based in the London Centre of Excellence. I am really excited about this brand new role and look forward to providing non medical advice and support to patients, families and carers, living with Behcet's disease.
I began my post on 11 March and have spent much of this time reading about and researching Behcet's disease. The forum has been a great way, for me, to gain insight from a patients point of view as to what it is like living with Behcet's. I am really impressed with the support you all provide to one another!
I will regularly be attending the clinic in London where I will be providing advocacy and support to patients at the centre. I will be able to assist with benefits advice and claim forms and letters of support.
I can also accompany patients in discussions and appointments with other healthcare professionals and social services when necessary. I am planning to start up support groups for newly diagnosed and existing patients, here in London and the surrounding area, where lifestyle support and information on the disease can be shared.
I've got a lot of work ahead of me, but I am very much looking forward to this brand new role and learning more about the disease from your shared stories and experiences.
Thank you and please feel free to contact me with any suggestions and or comments or if you have interest in joining a support group.
Congrats on winning such a fabulous role - wish I was still working! You can make this job whatever you want it to be can't you. Ooh how exciting. Good luck, I'm sure you'll thrive on it all!
This is excellent news Jean - and welcome to our forum
I hope you enjoy your new job it sounds pretty interesting and I am sure it will be a big help to patients and their families.
It is also good to know that you have been reading our postings as we often talk amongst ourselves about this and think it would be helpful for Doctors and other hospital staff to see.
I live just outside of London near Heathrow Airport and do not attend to Centre of Excellance yet as my local neurologist and rheumatologist are dealing with my condition reasonably well. London is pretty difficult for me to travel into for support groups and so far I am just about coping o.k with the help of this forum.
However it maybe helpful to be able to be able to ask for some other advice from you in the future, but would I have to be attending the C.O.E to do this or can I perhaps contact via phone or email.
Thanks so much for your message. I completely understand about the traveling and hope to meet you when you are next in London for your clinic appointment. In the meantime, why don't you message me and I can get back to you. I am so new that I don't have my Behcet's telephone number up and running yet!
Hi Jean and Welcome!!!! I unfortunately wont be able to see you as I see Dr David Carruthers at City Hospital Dudley Rd Bham. But hopefully if I ever need your help or advice etc could I email you?
No worries Englishrose, you've got the very experienced support worker Janine working with you up in Birmingham. I am hoping to making a visit up north to clinic in the near future for some ideas and inspiration!
Hi, There is a support worker at city hosp, Janine davies. I'm not sure whether I can give you her number over this forum, but I am sure that if you contact the society they will be able to put you in contact with her. or maybe if you contact Jean she will be able to pass on her number.
Hi Kenjay, I haven't met Janine yet, but we've been in communication and she has already been very helpful to me and has kindly answered my zillions of questions I email to her regularly.
Are you only able to provide support to London patients as in Scotland we have no centres of excellence just hospitals of great confusion where BD is concerned.
So sorry for the delay, I should have mentioned that I was away for the Easter weekend and wouldn't get around to replying until this today.
I will be dealing primarily with the London patients, but I can refer and signpost others in the right direction. You are right, there is not a Centre of Excellence in Scotland but there is a support group up there. By the way, are you a member of the Behcet's Syndrome Society? It's another great way to gain access to information and meet others with the disease. If you message me, I can pass on these details. There was actually an article in the latest edition of the newsletter highlighting the Scottish Support Group.
Hi jean, I am under Prof Haskard at Hammersmith, would you be the person I need for advice I do they have a support worker at Hammersmith Hsp. Sorry I'm still pretty new to all this so don't know whether I'm coming or going.
Good luck in your new job, certainly sounds interesting
Hi Jean and a very warm welcome. Do you realise what you have let yourself in for?????? Lol. Lots of laughs, some tears, and many, many friends. Good to have some new insights and look forward to hear how you are getting on.
How very reassuring to know that health professionals are interested in our little group.
I am one of the lucky patients of the wonderful Dr Jayne at Addenbrookes Hospital in Cambridge so I will probably never meet you. However, I wish you the very best for your appointment and hope the future is efficacious for both you and your patients.
I have heard that Addenbrookes Hospital is excellent when it comes to working with Behcet's patients. Are you a member of the Cambridge support group? I hear this is a very good group and I hope to make a visit up you way very soon. I'd like to get some ideas about setting up and maintaining support groups.
Yes we have a small but perfectly formed support group ran by a long suffering patient who I am sure would like to help you. We do not have regular meetings yet, but we all know that we support each other via various means, occasionally meeting in the very good WRVS cafe in the outpatients department.
After the problems it seems we generally get in finding help, it's nice to see a healthcare professional here to experience a snapshot of Behcets life.
I am in London but have no plans to visit the new centre - my BD is managed just fine for now.
Glad to hear that you are managing with your Behcet's. Just wondering if you are a member of the BSS and if you belong to any support groups in London?
okay, thanks. I'm only wondering because part of my new role will be to develop a new London support group and I am trying to figure out how many people might be interested.
Great, I hope to meet you then at one of the clinics some time.
Please let me know when you are next scheduled to attend.
By the way, I am gathering information on who might be interested in joining a support group in London. Not sure how practical it is for all patients to travel in for one. Do you live in close proximity and would you be interested?
Thanks Kimber. I've got so much to learn, but slowly I am getting there. I am going to post a question shortly asking who lives in or near London, and who might be willing to join a support group.
Jean, it is so nice to know that someone is there for all of us if we need support! Is there somewhere I can private message you if need be? Will I find you on the Behcets Facebook page? I am finding out so many new things about Behcets and knowing there is a Centre of Excellence is very exciting! I would love to be involved somehow with the BD society. I don't know what I could do, but I was diagnosed 34 years ago. My worst symptoms of mouth and genital ulcers disappeared after 7 years, but I am now in the process of trying to find out if the other things I have wrong with me are from Behcets or other health problems. My Rheumatologist doesn't know much about BD and going to different Doctors makes it difficult to get any real help from them. Thank you that I could share this with you.
Good luck with your new role, I wish you were around when I had to attend an appeal hearing re my benefit, I was so nervous I just cried. I've always worked since being diognosed 20 years ago, they just thought I was making it all up and turned me down at the time i was having problems with my eye and mini stroke symptoms , i spose most of it was my fault i wasn't able to lie and make things up yet by coincidence someone i know had a hearing the same day at the same court. He had nothing wrong with him i know because he works and owns 2 houses. He also gave me tips on how to act in the hearing he overdosed on medication to look as if he was depressed spilled water down his trousers! Honest:))) oh! and also wore very dirty and smelly clothes he left overnight in his bin and hey presto he is back on benefit with the wife as his carer:)) at the moment both are enjoying a holiday abroad. Anyway I can talk for England just wanted to say thank you for your support and good luck.
So sorry to hear about your appeal decision. It's so frustrating to hear these stories.
Do let me know if there is anything further I can do to help,
Thanks, also, for your good wishes. I really enjoy my role as London support worker!
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