It's been a while since I had a rant about the NHS appointment system. That's unforgivable but I'll make amends right away!
Way back in the dark days I was told, in no uncertain terms, that I must attend all LRI appointments as they were scheduled for justifiable medical reasons and based on individual recovery progress. I remember a senior nurse threatening to take me off the monitoring course when I had better and more important things to do on one monitoring day, despite her not having the authority or grounds for issuing such a threat.
But now it's becoming clear that it's only imperative when it's important to them... when it's important to me they don't give a shit, they just change the schedule without giving any medical justification whatsoever. It seems that their accountability to me has been dispensed with as unimportant.
The post-discharge appointment system is simple - turn up for a blood-test, wait for the results (usually 90 minutes), sit in the waiting-room until called, see the Consultant Haematologist, show him/her which bits are still working and which bits are falling off, and be given a date for the next appointment based on the available evidence. For me it started with appointments every two weeks, if all was going well then it went up to every four weeks, then every six weeks, then every eight... You get the idea.
Then they started buggering about with it...
The last regular consultation was on February 8th 2018, and after that I was due back 12 weeks later on May 3rd, but they bumped that two weeks to May 17th at short notice. There was no justification at the time, but I was told later that it was nothing to do with my progress, it was to accommodate staff holidays. Nobody asked if we had any holiday plans that might be upset by their buggering-about.
At that May 17th consultation they said I would be moved to a 16-week cycle despite me having some worrying "late effects" which they encourage us to record and to report. That made the next consultation date September 6th, and I was bounced to my GP to get advice about those "late effects". Later, I saw my GP and was told that despite appropriate tests they couldn't determine the cause(s) of the "late effects" and that it was the job of the LRI consultants to investigate them during the September 6th consultation.
And now I'm sitting here looking at a letter telling me that the September 6th consultation has been bumped FIVE WEEKS to October 11th. The letter starts with the standard "Unfortunately it has become necessary to change..." and goes on to include "We apologise for any inconvenience caused", but contains no justification whatsoever. And I know that my GP's surgery has told them that my "late effects" should be investigated by the LRI team, because I had to authorise the GP to send my Care Record to them.
Accountability? Pah! All they have to do to make this more palatable is to explain why, but that's not a part of their process. Or they could have kept to the plan, which was designed so they can find and address minor problems in good time before they become major issues.
One other thing about today's letter - it provides a phone number for me to arrange for an interpreter to accompany me to the consultation. I wonder if they can provide one who is fluent in Coprolalia.
