So after waiting for a sooner appointment, I heard nothing for weeks and therefore I decided to email my rheumatology nurse. It has happened before where my nurse hasn’t had any of my notes passed to her, so I decided to tell her everything that had happened in my appointment with the consultation so that she was prepared.
I had been in more pain since reducing my dose of mtx and my skin had become quite sore, but I just set my sights on my appointment in March to get me through.
So yesterday was the day that I could finally get started on a new treatment that may work. I was apprehensive about having to inject myself, but at the same time excited to get better. When I arrived, it was not my usual nurse who greeted me, but another nurse named Jill. When we got in the room, Jill said the words that made my heart sink “so you’re here for a check-up”. Instantly I knew that my notes had not been passed along from the consultant.
I knew that this would happen, which is why I emailed Judith a few weeks earlier. Jill explained that Judith is on long term sick and therefore she will be taking over her patients, as well as her own, but she had no access to Judith’s email.
Obviously, Jill could not take my word for it that I was meant to be starting injections, so she has to contact my consultant to confirm this. The second bad news of the day was that my consultant has just left and gone to Tenerife, so there is going to be a delay. Once this has all been confirmed, the injections need to be ordered, which can take a while.
Then even more bad news, Judith was the only nurse who knew how to use the metoject, therefore Jill needs training before she can show anyone else. On top of that, because she is having to see both her own and Judith’s patients, it is going to be a long wait to get another appointment with her.
So basically, I am left in limbo with no idea of when it is all going to get sorted. This is just one of many occasions where I have been let down. It is incredibly frustrating and I don’t even know what to do about it all…