"Multiple Sclerosis Centre"

I would attend every month for an infusion of Tysabri which is to reduce onset of relapses and thus disability. This was all very good and went to plan. However, after six months, I felt that this was not working for me. I was not listened to. After another six months I was becoming more disabled over time and again, after wishing to change treatment I was told to 'wait for it to kick in and start working'. After two years I had progressed from not needing any mobility aids to walk, to using a walking stick, then a crutch, then two crutches.

Getting to the appointments became extremely difficult as it became a long, fatiguing, painful walk from the main entrance to the clinic area. Nobody seemed to understand, care, or empathise about it. I got the impression that it was my fault for being alone. Because of the physical difficulty, I asked if appointments could be done over the phone once I finally stopped treatment. This was agreed. In one of these (useless) calls, one of the "specialist" nurses told me that "having a partner will help make you feel better." So that was treatment advice for me. I should have a romantic relationship. Never mind the fact that I now could not go out to a bar, coffee shop, or whatever, to meet someone. Unless of course I was meant to go online and invite people to my house for dates. I really do not know what planet this clinical team are living on.

The Doctors and nurses have not listened to me. Not only that, but the consultant I was under was not even sure what they could offer to help. I explained how poor the quality of my life had become. I was told that 'psychology' would help me. I live alone, with no family near me so psychology did not help me.

I'm just shocked at the awful care and attitude over time and how the standard of not listening to me and the impression I got of 'well, you're not the only one in this boat' and 'at least you aren't totally paralysed, there more worse off than you'. The lack of empathy was outstanding across the board.