And so I ended up thinking about where we are (I am) right now, so here goes…
I was first advised of this Pituitary Adenoma on Thursday 28th May (2015), was referred to St James’ (part of LTHT) the same day and seen by someone on Monday 8th June. So presumably my 18 weeks runs from then and ran out on Monday 12th October?
However, I still do not have a surgery date and I have two outstanding issues. Firstly that I was referred to the sleep clinic as part of the pre-operative assessment process. I have still to receive an appointment as a follow-up to that despite it being almost 2 weeks since my GP said he would make the referral. (I hope he did, I will check when I see the GP on Tuesday). I was told that this would not affect my listing for surgery apart from needing a high dependency bed after surgery, but it would be good to sort it out.
The second issue is controlling my blood pressure. Yes, some of the delay is legitimately attributable to the desire to bring my blood pressure down before operating, although it’s intriguing that the letter that sent me back to my GP for action on this did not have a target BP nor did it have any detail about who/where to send it back to when BP is under control. But on reflection, my biggest gripe is that this whole process of BP control could have been started so much sooner. It must have been apparent at first look that some substantial medical intervention would be needed and I could have been sent for BP control much earlier and hence be available for surgery much sooner.
I would like to think, indeed this is my rationalisation, that if things were more serious I would be getting more urgent attention…
Fortunately (?) I have yet to hear from DVLA to whom I sent the relevant form advising them of my condition. I can’t imagine that they will withdraw my licence, but again it would be good to have clarity.
The good news is that when I raised my experiences with LTHT’s Head of Patient Experience, I was taken very seriously and we are now working to see how my story might help their learning journey and improve systems and hence the experiences of future patients.