I never realised until a friend informed me that even though i’m NHS I am entitled to see a specialist of my choice (NHS) anywhere in the country, it doesn’t have to be in your catchment area. Invaluable words!
For me knowledge is power but at the moment I have not yet spoken to a professional who knows more than I have already googled.
I phoned the BSSA helpline, where a lovely lady told me a bit about herself and also told me where the top Sjögrens specialist was, although her NHS books were closed at the moment and I could only see her privately. I decided I was worth it! My Father kindly offered to foot the bill
Wow what a different experience this turned out to be, this is the first time iv’e gone private. I arrive at a very plush reception where I am welcomed by a lovely nurse who offered me coffee. And my goodness only two other people in the waiting room. Please don’t misunderstand, I think the national health service is amazing and has served me very well.
I have to be honest although I had been told I had Sjögren’s I still didn’t quite believe it. However the specialist confirmed that without a doubt it was and explained how the blood tests confirmed it. She then proceeded to examen me, checking my eyes mouth and joints. She told me I was very well put together which should stand me in good stead. (Doesn’t feel like it at the moment). Also being a personal trainer should be a bonus as I understand the body well and know how to exercise.
She spent about 40 minutes with me, answering my questions. She suggested I should go on Hyroxychloroquine. However there is no guarantee that it would help and could take up to six months to kick in, also potential for side effects which would mean coming off it.
The specialist also put me on Hylo-Forte for my dry eyes and Pilocarpine to try and stimulate my salivary glands.
I left feeling I had been equipped with the right information to deal with it and quite determined that I wasn’t going to let it effect me however this proved difficult as I didn’t realise how relentless this condition can be and how bad it would get.
Seeking out the right Specialist was the best thing I did, I now see her through the NHS route, where I have to say although the wait is longer in the waiting room I never feel rushed when I get into see her