After asking my doctor to refer me to a centre of excellence and getting know where ,I even saw her on Friday and was told I was depressed and couldn't cope with my illness and that she don't know anything about these places and didn't know if I could get funding , she wouldn't even look it up , I came home and cried my eyes out she was useless , Today I took things in my own hands and rang a centre myself and spoke to support staff who were lovely and told me they would take me on and funding is ok and to ask my Gp again and be armed with info for her , they are even sending me some to give to the practice so they can understand more about Behcets , I called my doctor today and informed her of what I did and gave her the address , she was not happy one bit that I proved her wrong but said she would refer me to the centre ,, Finally I may get some great help as my meds just don't work and when they do they stop working .feeling upbeat its a same I had to make a fuss as I hate that but this time I had to do it for myself and well being .
feel like I won the lottery : After asking my... - Behçet's UK
feel like I won the lottery
Hi Samhawks
Why didn't your hospital give you medication? What made you go to centre of excellence? Just wondering as iv been reading about centre of excellence as I may have to use them!
✌️❤️
Dezie
Hi and well done. I had been attending the inky Behcets clinic in UK for 20 years but it closed down due to lack of funding in September. They sent a letter to my new GP of two years asking them to refer me to Centre of Excellence when and as needed. Well that came sooner than later just before Christmas. I had the same problem even though I had been attending out of area for all that time. I too had to fight for my rights but I am now older and toughened up and I now have an appoinmtment soon. None of us should have to go through all this just to get the treatment we need. It's bad enough feeling ill, stressed and in pain. Still things are much better now than 30 years ago with better treatment, more knowledge and of course the society and this site. We must help each other as much as possible with advice, aid and good old fashion listening!!!
Hugs and Smiles
Billi
Hi I do have meds , but they always stop working and I feel no ones really knows enough about it , I just want to be in the best possible hands
Well done you Sam!! It's a shame your GP is so difficult it must make life very difficult for you. Anyway...stick up for yourself and let us know how it goes....I got welcomed at the Behcet COE by another member who I had met on this site which was lovely...keep us posted xx
Big pat on the back for being persistent about getting some care and don't worry about making your GP cross. She should have spent 2 minutes doing some online research and made a phone call, and she knows it.
Hope a visit to a COE gives you some options. They might also be able to give you information about more professional GPs in your area if you have understandably lost trust in yours. Best of luck.
Hi Sam,
I just want to say well done. It is so hard in our situation to get the support we need. Well done for getting the extra info you needed and being brave enough to challenge the gp for a second time. I hope you get the help you need. Good luck
Am I likely to get funding for infliximab?
Medication I have found successful
Flare ups
Going crazy
