“The endless frustration of seeing one specialist after another” [AUDIO]
“It’s what I hear all the time. (I mean) I’ve got far too much experience of being on the receiving end of the NHS with long term conditions, and the frustration of having a chronic condition in a system that is really geared up for the acute. It’s been really helpful for me to train as an expert patient myself and, even better, to train as a tutor; and now as an assessor for tutors. I hear this same stuff over and over and over: and the frustration. I’ve learnt how important it is to educate people and equip people to manage their conditions. But it’s easier said than done because you’re spinning so many plates, and the endless frustration that people have of seeing one specialist after another, only looking after their speciality. So often people are hearing ‘That’s not my department’. It’s really important how one condition affects another – particularly for auto-immune conditions – how it’s all the same thing. But everybody’s looking at it from an acute angle.”