Hi my name is Janine and I am writing to introduce myself as Support Worker for Birmingham Centre of Excellence. I started working for Behcets Patients Centres Ltd on the 17th September and have so far spent time understanding Behcets, the society and reading this forum to get an insight into patients experiences. My first clinic will be at City hospital, Birmingham on Friday the 5th October 2012.
My role as support worker will be to provide an independent advocacy service to patients and families with regard to benefits advice and assistance with claim forms where necessary, to make referral’s and signpost to other healthcare professionals for any further assistance required (i.e.: Occupational therapists, social workers and psychological support), to provide lifestyle support and information about the disease to newly diagnosed patients and to offer practical support group work.
I am currently trying to make links with organisations to raise awareness of the disease and to access support groups that maybe available for patients living with long term conditions.
Thank you for taking the time to read this and I look forward to hearing from you soon.
Janine Davies
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swb1
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A very warm welcome to you Janine. I won't be attending the Birmingham Centre of Excellence but I am very pleased that you have introduced yourself and explained your role.
I wonder - do you have any medical training? I ask because it will help us to know how much advice you can give us. By that I mean that years ago I had a named specialist BD nurse whom I could contact by phone or email with queries that were not really serious enough to warrant contacting my Consultant, but enough to worry me. My GP didn't know enough to be able to advise. That's not a criticism, I fully appreciated that it was beyond his expertise.
I mean the sort of things you see on here, like people who are worried that new symptoms could be side effects of new medication, or whether a particular problem needs urgent attention. I wonder if your role includes being a front line contact for this sort of thing, fielding queries and directing/delegating them to the most appropriate person?
Unfortunately when my specialist nurse left she was not replaced but I found her advice and support invaluable. It also freed up Consultants and Specialists from answering queries or giving reassurance (which is often all that is needed) and enabling them to focus their expertise where it was most needed.
Meanwhile, please feel free to post any queries you have that we may be able to help you with and keep us up to date with how things are going for you and what you are up to - it will help all of us understand your role and how we can all get the best from it.
For example, it would be interesting to know which organisations you make contact with and what their response is.
As you will see from the forum, our symptoms and concerns vary, but we are all supportive of each other and want to make the best of our situation. It looks as if yours, and other Support Workers' involvement will help us all to forge ahead with the best support available.
Thank you for stopping by to say hello. I will do my best to answer the queries you have raised. I do have a medical background however medical advice does not fall within the remit of my position. I have a supportive role within the clinic sat Birmingham Centre of Excellence, helping with benefit advice, patient liason, support groups and signposting to other organisations. Birminghams Centre of Excellence have recruited a specialist BD nurse who begins in post in November, at which point i'm sure she may join the forum and introduce herself. I will be sure to keep you up to date with my progress within my role as I settle in!
If you have any other queries please don't hesitate to drop me a message and I look forward to lots of interaction via the forum in the future.
so glad to hear from you! I am in the middle of trying to figure out what to do about ear pain and hearing loss as none of the docs seem to know what to do. Does Birmingham have docs who are very well-versed in Behcets? I am desperate enough to have made an appt with Dr Yazici in New York. If Bham people know as much as he it would be much closer. I have seen Spalding and Read but that was last year and Spalding didnt concentrate on Behcets. Also, do you know of any associations that could help with travel costs to New York?
There are three Behcets Centres of Excellence located in Birmingham, London and Liverpool which will allow patients to see clinicians with expertise in the management of Behcets Disease covering different specialities (rheumatologist, ophthamologist, oral medicine and access to other specialities including dermatology,neurology and specialists in genital ulceration and gastroenterology.
As we have worldwide expertise at the Centres it may be beneficial for you to attend a clinic and you shouldnt need to travel out of the U.K.
I hope this information is helpful. If you require any further information re the clinic's please get back in touch.
Welcome to the forum I am sure you will finds us all a friendly bunch and this will be helpful for you to be able to help patients in your work.
It is fantastic news and it is encouraging to hear from people working within the centres of excellence.
Hopefully you will be able to keep us up to date with what's going on in the field of behcets. I noticed on another forum that certain doctors and health proffessionals are adding monthly blogs and wondered if you had thought of doing something like this.
Thanks for the welcome message. I will of course keep you up to date with my progress within my role and think a monthly blog would be a good way of doing that.
Also if you have any other queries please don't hesitate to drop me a message and I look forward to lots of interaction via the forum in the future.
A very warm welcome to you i have had BD for a long time and at last we have got a centre that can help with many problems we all have. I now that this illness is very much a disability but it is not always recognised by people because you look ok they do not understand how we feel.I see you are holding a clinic on the 5th october do you have to have an appointment to attend. It would be very interesting to now. thanks pat.
I anticipate that the Centres of Excellence will definitely make a real difference to the delivery of healthcare and support for BD patients and I am excited to be part of the team.
I will be attending the Birmingham clinic on the 5th October and am hoping to introduce myself to all patients attending. I will provide information about my role as Support Worker, the Birmingham Support Group and will be available offer assistance that may be required.
If you have any further queries or if i can be of any assistance please let me know.
Hi again janine does this mean that this is clinic is available to just turn up as long as you are a B.D sufferer and if so what time is this meeting thanks patty.
You will need an appointment to attend the clinic, your GP can refer you. If however it's just an appointment with myself you require let me know and I can arrange something. As stated medical advice and assitance is not within the remit of my post.
My role as support worker will be to provide an independent advocacy service to patients and families with regard to benefits advice and assistance with claim forms where necessary, to make referral’s and signpost to other healthcare professionals for any further assistance required (i.e.: Occupational therapists, social workers and psychological support), to provide lifestyle support and information about the disease to newly diagnosed patients and to offer practical support group work.
thank you and yes it would be of help to speak to you with regards to advice and assistance. How would i get in touch with you with arranging appointment for a chat thankyou pat.
I am currently living in Australia and have been for the past 6 years. I was diagnosed with Behcets here about 4 years ago.
I am originally from the UK and resided in Birmingham. I am looking to move back in January and as you can imagine I am very nervous about the move "healthwise" as I am heavily medicated over here and at the moment just hanging in there and want to make it as smooth as possible to keep stress levels to a minimum.
Is this the type of thing that you will be able to help or just provide information on?
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