"Nothing but the run around"

Requested a referral to the Fibromyalgia and CFS clinic before the Covid-19 pandemic, hoping that with specialisms in both of my conditions, I would now receive the appropriate treatment and support. Boy was I wrong!

Owing to the pandemic by the time my first appointment was due there were no face-to-face appointments so I had a telephone consultation with my consultant- gave my long & complex history and was told that the next appointment was to be face-to-face so that I could be examined. A referral to physio was also promised. 

After a while (months) of not hearing anything about the referral or my next appointment, I emailed the department and was informed that my consultant was on holiday but would contact me directly to sort out these things that were not done. The consultant did call me from their holiday, very apologetic and advised they would organise an appointment for me upon their return the following week. 

Again, over a month passes and my email was this time ignored so I called in to find out that my consultant had now retired and that no replacement had yet been found so I have to wait. For months again, nothing but then I'm given another date for a telephone consultation with a different consultant.

This consultant informed me that the prior consultant did not write notes so they had to take my history again. Part way through this, the consultant interrupts me to tell me that I am too complex, they then went into detail about having my case dumped on them and told me I was keeping their other patients waiting.  The consultant went so far as to tell me they will send me an appointment in 6 months but their patients were calling them. I just burst into tears.

At this point I was asked what do I want them to do and I was just shocked at how I was being spoken to. They then offered me a referral to physio and for autogenics and I just agreed, not wanting the call to result in nothing happening again. 

By now it had been at least a year under the hospital but not really seen properly and with my GP's not wanting to review meds etc as I was under specialists I was desperate for something - but should have complained.  After a number of cancelled appointments I called as the last cancellation did not offer an alternative appointment. I was told that this was due to the consultant going on long term sick and they needed to recruit to the post, so again I must just wait.

I asked about seeing one of the other consultants and explained that I was struggling with my symptoms and the tablets I was on were no longer helping. I also shared that my GP's were not wanting to get involved with this aspect and also shared that my haematology team (for another condition) were requesting a review and to work closely with my rheumatologist as the rheumatology symptoms were similar to the symptoms of possible worsening of my haematology condition (MGUS) they had written to this effect. 

I was called back with an offer of a face-to-face appointment with one of the other consultants but this was about 5 months ahead... desperate I took it only to have the appointment cancelled just weeks prior with again, no other appointment offered.

A few weeks later an appointment (by telephone) was offered for 3 months later.  I have had 2 telephone consultations over a period of 3 years and have no review of my medication or symptoms. I was turned down for PIP with it explained that I was not in receipt of specialist support and couldn't argue otherwise.

I am desperately gripping on to a job that I am blatantly struggling with and have already had to reduce my working week due to the pain and exhaustion. Never before have I felt so disregarded as a person. After my experience, I'm looking for somewhere else to be referred to.