I’ve been treated at the specialist Rheumatology Hospital, Chappell Allerton, Leeds since 2000. I cannot sing their praise more highly, an incredible resource led by Prof Emery. I got RA in 1996 at a time here in Sheffield when Rheumatology had a pretty poor reputation - gained this knowledge by being treated in Sheffield for the first 4 years. In 2001 I had my first operation to fuse my left ankle. Because I was still at work I was operated on in Roundhay Private Hospital by the excellent ankle specialist Nick Harris. I do not approve of Privatised Treatment but because I was in a Senior IT Role I was entitled to BUPA. Although the operation was done excellently, the actual time in recovery was dire - 2 agency nurses looking after 48 beds over a whole weekend shift. I’ve had treatment on the NHS at Chappell Allerton a number of times since 2001 and it was superior in every way. Private is fine if you want your own room and a haut cuisine food brought to your room via a waiter. After retiring in 2004 on ill health, Nick Harris continued to do all of my further surgery on the NHS. In Rheumatology I continued under Dr. Sarah Bingham - they have tried and persisted with my RA Treatment over the years, many different drug regimes, numerous different Biologics and a couple of trial drugs. I’m afraid to say that just a couple of Biologics appeared to initially make a difference, only to fizzle out after a year. Does anyone else share my fear(s) in that because we are told about the cost(s) of treatment (I’m currently on weekly home injections of Abatacept which I’m told costs £13k per annum per patient) I begin to feel either (a) I’m not appreciative of the drugs and/or illogically feeling I’m guilty after all this cost and it makes no difference (b) I sometimes tell them I think it may be working, when it isn’t because I don’t want their efforts to be in vain or (c) because of being on a number of different Biologics over the years I don’t know what it would be like to NOT have treatment? Rather than having a ‘silver bullet Lazurus experience’ the drugs may be keeping me in some sort of level minimal flare condition?
I once, when I was at my worst, had to be an inpatient for 4 weeks. A young woman (33) was brought in on a stretcher totally unable to walk and take care of herself. They used to lower her into the exercise pool very gently on a hoist. 3 weeks later she was discharged and walked out of the hospital carrying one of her children.