Appointment expectations

[Fluffycloudinthesky]

Hi, I’m about to have my appointment at the COE Liverpool, really don’t know what to expect? Anyone have any advice??

thank you! 🙂

[CrochetGiraffe]

I attend the COE London and I would say prepare for a long day. The first appointment can feel pretty overwhelming because you will be seeing a few different doctors so I’d say it is key to stay organised. I have a folder of medical notes separated into departments (ophthalmology, neurology, rheumatology etc) I find this helps with knowing where the information is when being asked questions. After my first appointment I remember feeling a little lost because I didn’t find anything out as such it was more and in depth review of my health, with a few suggestions and minor prescriptions. They also took ALOT of bloods (26 different vials) so make sure you have a sugary drink at the ready for after.

[cherie1w74]

Hi I attend Liverpool COE. Prof Moots and the team are amazing. They have a great system there and are really efficient but as said by CrochetGiraffe prepare for a long day and don't expect too much. If you have any photographs of your symptoms be sure to take them and show them as they are a great help to the doctors. If you have any issues related to your behcets which aren't medical such as issues with work etc then ask to speak to Jackie Pooler. She's a specialist worker and she's great and really knowledgeable and will help wherever possible. You're in good hands.

[Sherlock11]

Hi, I also attend Liverpool CoE and have been since 2018. I agree that you should take any photos, notes on any symptoms even if they don't appear relevant or minor. I know sometimes if your are anything like me you always think of things you forgot to ask. Take someone with you if you want to add a second ear as you might not take all the info in, and they may add things you forget. They are all so nice and caring and put you at ease. I hope everything goes well and you are sorted out.

[MrsR_75]

Hi there, I am also at the Liverpool Cof E. I was originally in London, but was moved to Liverpool due to where I live.

It is a long day, but there is a real feeling of relief I think for being in one place and having everyone there to speak to.

Go prepared – whether it be a book/iPad or something else to keep you occupied but also with your own thoughts and history written down (so you don’t forget about timings and symptoms in the moment), photographs taken etc.

It’s a slow process but really worthwhile. They are a great team.

The first one I attended a lady in front of me cried with joy. She had had a lifetime of Behcets and consultants all over the country for various associated problems. She couldn’t believe being treated in one centre in one day and not having to negotiate various consultants different clinics and hospitals. Her mobility was not great so that made all the difference to her.

The very best of luck to you.