Has anyone else found that their communication channels with the arthritis nurses and the consultant have largely been closed down? When I started on Benepali in 2017, there was a phone line I could call any weekday morning, leave a message, and someone would call me back within a few hours. It was great. Then it got cut to four days a week. Then three days a week from 8.30-11.00. Then it went to four days a week with a mad rush at 8.30am as the line was closed once a certain number of messages had been received - no idea what happened if you were unable to phone at 8,30! And now…the phone line has been closed completely. Instead, we have to ring the consultant’s secretary, who never answer their phone, and so you leave a message and wait…and wait. Is this happening elsewhere in the UK?
Anyway, I saw my consultant in November. We agreed a course of action: short course of steroids to get me through the current flare, and then a move from Benepali to ixekizumab in the new year. He wrote to my GP (and copied me in) and said that this was the plan, and that the Benepali was essentially non-responsive. But we’re now at the end of February and nothing has happened. Since the start of the year, I have fallen twice. Yes, there were circumstances that contributed to that, but if you bear in mind I hadn’t fallen in 30 years, it’s likely that more mobility would have stopped me from going over.
I’ve rung the elusive secretary and left a message, but I’m not really expecting any reply, and there’s no email address for the consultant that patients can use. So does anyone have any idea of another course of action of getting the hospital’s attention?