I attended an NHS organised focus group tonight led by a doctor, talking to arthritis patients and trying to find out their opinions on general practitioners and their care.
It was quite interesting, the group was for young people and there were 4 of us there, the other 3 had had their conditions since childhood so had a lot of experiences with the medical system, unlike myself. Initially the topic was meant to be GPs and their 'pain management' techniques, but what soon came out was that most people were more concerned about the GPs neglect of the psychological aspects of arthritis. Again and again, people made the point that doctors don't tend to discuss the further reprecussions of arthritis on the mind, relationships and the effect the disease has on day to day life. A point I made was that no one in primary care, or at the rheumatology clinic has offered me any sort of emotional guidance or counselling. I don't want to diss my doc here, I love my rheumy, and I know time/money is tight. But they didn't even point me towards Arthrits Care or any other charity. There's posters up on the wall, but no one encouraged me to call or even asked me how I'm coping emotionally with the diagnosis.
It was also quite sad to hear some people's stories, like one girl who was my age (24) and had been diagnosed with ankylosing spondylitis last year but she'd had it her whole life and no doctor would ever believe her. She'd spent her childhood in terrible pain, going from doctor to doctor and being told she was 'making it up', until an MRI finally showed so much damage in her spine that it's now irreversible.
Anyway.. it was very interesting and I hope that the piece of research doesn't just get buried under lots of papers on someone's desk.
I got a £15 shopping voucher too, thanks NHS! I do fund you, after all.