Feel frustrated

I am supposed to be on the early inflammatory arthritis pathway having been diagnosed in January of this year. Everything was going to plan when I received a change to my telephone appointment from July 4th to 20th September. Today I received another letter deferring my telephone appointment to the 12th October. Which has meant I have missed a telephone appointment and 2 nurse appointments in this time.

Does anyone else have this problem.

6 Replies

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  • It is extremely frustrating...I have had five dates for my next appointment. The most recent date they offered I will be away. I have found that calling appointments and seeing if there are any cancellations can help. As can calling/emailing rhumatology nurse/helpline. In the end this time i called and asked for the consultants secretary to see if they could help. In the end I spoke to the someone called the clinic manager who was sympathetic, as had everyone else. She found me slot the week after I get back from holiday.... basically I ended up sitting with a cup of tea and making phone calls...it did work in the end. I always think that you have to be feeling OK to put the effort in to get things changed. Usually for me I'm feeling rubbish when I need to this kind of stuff which makes it really tough. Not sure if my ramblings help. Best wishes Mary

  • I thought about calling to see if I can have a cancellation. I have just started MTX injections last week. So will see how this goes.

    We do have a help line that we can call which may take a few calls before you get a response. It was following a bad a spell in June and several calls later when I finally spoke with the specialist when it was decided to change me over to injections from tablets.

    Well let's hope this improves my pain and stops the terrible nausea I was experiencing. So far so good second one today.

    If another appointment is changed I will call the service and ask if I can be offered a cancellation if one becomes available

  • Once I finally got referred I started on the early arthritis pathway, which was great. Fairly regular appointments, lots of nurse support, I even once got a same day (!) appointment with the consultant I was in such a bad way.

    However once I was starting to get under control I found that I was no longer a priority, so much longer between appointments (now 9 months) and a fair bit of things being altered at last minute. Also my consultant went on maternity leave for a year, so that put pressure on the system. Generally I found ways to manage, and got to know the hospital system. The thing that really makes me mad is the very high number of missed appointments - when so many of us are desperate for an appointment just not to show up without cancelling is cruel!

  • That is the very reason i changed hospitals, much better at the new one,

  • It is usually the appointment office that is changing your appointments because of clinic cancellations (often because of staff shortages), so don't take it personally that the rheumy team are not wanting to see you! I know from conversations with the staff that they are feeling very frustrated that they cannot offer a better service, but too few doctors and nurses are being trained and there are vacancies everywhere.

  • I realise all services are under a lot of pressure as I work in the NHS as well. I spoke with someone today who works in this particular hospital and says they are cancelling appointments all the time especially since Christmas as they have been in black alert for most of the time.

    At least I have the help line even there might be wait before I speak to a nurse

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