I was at work Thursday morning when my GP surgery called me and I couldn’t help but think “here we go!” As I was anticipating it to be regarding my email and consultant’s letter about the referral to the Behcets Centre of Excellence.
It was a GP I’d never spoken to before (can’t remember if she introduced herself as a locum) saying she’d read my email and the letter from consultant and would like to ask a few questions before doing the referral.
So I explained to her about my symptoms and how they effect me and she actually acknowledged how awful it must make me feel and how frustrated my symptoms must make me.
The entire conversation was an utter breath of fresh air in comparison to others who try and tell me that I don’t feel that bad or that there isn’t anything wrong. She even admitted that they hardly ever hear of behcets so wanted to speak to me to hear how my symptoms relate. And that was that, my referral has been processed and hopefully I’ll be seen at the royal London in a relatively timely manner! It made my day and I’m honestly considering writing to the practice to pass on my praise (in comparison to other clinicians I’ve had to deal with there).
Ps, I know there is a Behcets forum but it doesn’t appear that active and everyone I’ve met on this lupus group is so amazingly friendly I’d like to stay for the chit chat 😂
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TeaandToast94
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Hi tea and toast and we love having you on this forum- I often find that locums and young doctors are a lot more approachable than the ones that have been GP,s for decades that’s in my opinion anyway - I’m so pleased that your phone call went well and that someone actually listened to what you have to say - hope you don’t have to wait long for the referral xx
Hoorah!! I am so pleased for you. I understand how much of a relief this is for you. It is so good to get someone who actually listens. Hopefully you will be seen quickly xxx
I know exactly how you feel! I was diagnosed with Behçet’s last month after more than 20 years of symptoms. Took 15 years before I was referred to rheumatology and then for my rheumy to retire and a young one to take his place before I was diagnosed. My GP also retired but I couldn’t fault him. I switched to him, after getting nowhere with my regular GP, and he was the one who referred me to rheumatology. I now have a young female GP and I do feel I have a great team. Haven’t been referred to a Centre Of Excellence as they are so far away. I live in Scotland and we don’t have one up here. Hopefully you won’t have to wait too long for your appointment. Xx
How wonderful to hear a story of a helpful doctor! Thank you so much for sharing. I know I forget sometimes that there are success stories (or partial-success stories) and you have reminded me there are some genuinely great doctors and health professionals out there.
Thank you everyone! There really are some wonderful doctors out there. I’m now equal measure excited and petrified to be seen in London, could be the start of getting better
I am so pleased at your news tea and toast and yes that doctor must have been like a breath of fresh air. Wonderful you didnt have to fight for the referral. Please do stay on forum as you help make it the lovely place it is. Also, these illnesses are very similar with similar treatments so it doesnt really matter which forum.
You might be interested to know that Gloomey Eeyore and Cecily Parsley are very experienced in Behcet's disease so you might like to chat to them if you don't already.
I do hope you wont have to wait too long for your appointment and it goes well for you. Keep us posted and keep safe. Xx
Fabulous news 🤗 all it takes is one doctor who takes our symptoms seriously doesn't it? It was a dermatology registrar who discovered my lupus whilst the consultant had been scratching his head for quite some time!! 😹
Actually now I'm thinking about it..it was another dermy registrar who referred me to rheumatology last year..and he initiated a shared care agreement with GP!!
And with help from here I managed to convince dermy consultant to change my meds to Methotrexate which has helped me enormously!!
I haven't seen dermy consultant since 2019 n tbh I've had better care since then. 😹
Am glad to hear you're making progress n I hope your appointment comes through quickly 🤞
Don't you dare go anywhere..stick with us coz we're all in the same boat..we just got different paddles!! 😹🌈😽😽Xx
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