New to BD: Hi I am pretty new to BD. I started... - Behçet's UK

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New to BD

nigel99green profile image
6 Replies

Hi I am pretty new to BD. I started to get symptoms less than a year ago.

I have found this site really useful as I am finding it hard to find information.

I have been referred to the Birmingham centre of excellence can you help me to know what to expect when I am there?

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nigel99green profile image
nigel99green
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6 Replies
andreafm profile image
andreafm

Hi there....great that you managed to get diagnosed quickly and now being referred to birmingham centre of excellence.

I haven't got any person experience of the coe but many people here have been and have had really good reports.

The main thing is that you will be seen by doctors who all have experience in behcets and in one place.

Hopefully others who have been will come on and give a personal account and info

In the meantime feel free to fire away any questions and we'll do our best to answer. This group is probably the best place to get first hand info.

Good luck

Dexter01 profile image
Dexter01

Hi I too have recently been diagnosed and maybe referred to Birmingham so will also be interested to hear any information. I am under Bristol eye hospital and Taunton eye dept and Rheumatology. All seems so confusing at the moment not sure if I am referred to Birmingham if I will just visit there? Seems like I will need a bigger diary for all my hospital appointments!!!

xandii profile image
xandii

Hi Nigel, Welcome to the forum site and well done to be so communicative and learning so much about BD and how it affects you. I go to the Liverpool COE but I am Pretty sure they all work in the same sort of way.

The centres are basically all the different types of consultants you could possibly need to see all together in one place for convenience so you can save on attending several different appointments and have them all together where the information is shared among them all which is so beneficial.

When you first arrive you will probably be called into a side clinic room to have your blood pressure and weight recorded. From there you go in to see the person who is co ordinating your visit to the clinic who will interview you and look at any pictures or letters you have brought with you and ask you about any concerns you have before booking you in with the various consultants you will need to see that day. This is usually the head BD nurse who understands the whole condition very well.

From there you will wait in the main waiting area and be called in to see each consultant on your list where you will go through each of your problems that this expert can help you with just as a normal appointment would be. Once you have seen all your consultants you will go back to the head nurse who will check if you need any further blood tests or Xrays etc.. that the consultants have asked for and arrange for these to be done straight away. Eventually you may be asked to go in to see the head of the centre if it is felt necessary for you to do so if anything has been raised that needs to be discussed that the other consultants haven't raised but this doesn't always need to be done of course.

Once you have completed all your appointments and asked all your questions you usually go to the reception area and get any claim form completed for expenses if you qualify for these and then make your way to the cash office and the pharmacy if you have any prescriptions to fill and then you are free to leave.

As you can imagine it is a packed day and quite tiring so you need to arrange for maybe your partner or a friend to come with you for support but the whole atmosphere is usually friendly and relaxed with the other patients and staff and most people meet others in similar situations and even build up friendships over time. It is also a great place to talk with other people with BD and get all manner of information that is useful to you.

So thats basically it with a cuppa thrown in for good measure ! My advice is to take notes with you so that you dont miss out anything you need to discuss and also be ready to take down any information you might want to while you are there. Once all the consultants have reported their own discipline notes to the main secretary it is written up and a report sent to your GP with a copy to yourself if you have requested one.

Hope that was helpful to you . Take care and good luck ! mwah ! XX

Dexter01 profile image
Dexter01 in reply toxandii

Thanks for this info. Birmingham has been mentioned to me and reading this info I feel it seems just what I need rather than seeing all the different specialist and possibly no one talking to each other. Not to mention my confusion and anxiety over treatments that have been suggested. Be good to talk to others too. Take care.

xandii profile image
xandii

Oh ! I forgot to mention that at each COE there is a person employed by the BSS who is there for any queries you have with things like benefit forms who will help you and give you any advice the BSS would normally do on the web site. I have got to know Jackie at the Liverpool COE very quickly and we have already formed a friendship with her very professional but easy going attitude. The relative equivalent of Jackie will most probably make themselves known to you when you are in the waiting room so will be a good contact to have onboard for future reference.

Take care, XX

nigel99green profile image
nigel99green in reply toxandii

Thank you for all the info :)

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