Catching up

You might have noticed that I have not blogged about ‘my condition’ for quite a few days. The truth is that I go so hacked off with the ongoing hassle, and one issue in particular (see below) that I almost lost interest. But it’s my health and sanity at stake, as well as the health of other patients who I hope do not have to undergo the saga of administrative incompetence that I have. So this post is by way of a catch-up, written whilst I am sitting having blood taken every half hour for a Glucagon Stimulation Test (checking the response of my pituitary to stimulus). I ‘passed’ the test before surgery so fully expect to do so again; the significance now is that this is the test that will (hopefully) get me off  oral hydrocortisone.

So where did I stop? The last two posts addressed the unsatisfactory situation I found myself in when a copy of my discharge letter was not sent to my GP and the ridiculous waiting times to speak with the appointments service. Since then things have moved on. I invoked my right to use the Patient Advice and Liaison Service (PALS) to try to clarify things and get that all-important endocrine clinic appointment in place. They did that and then I found myself in the odd situation that my appointment at the clinic was scheduled BEFORE the various tests that they would find useful had been completed! Still, I went along and had a useful and very worrying chat with one of the endocrine registrars. The positives were:

• that ‘I’ had been reviewed by the MDT, who were not particularly concerned about anything
• that the histology had come back OK (i.e. benign), with just a slightly increased propensity to regrow so they will look at the MRI in the MDT and we can decide what (if anything) to do with any remaining tumour
• that the follow-ups tests taken before I was discharged were all normal

I was advised that when the varying outstanding results came through they would be reviewed and I would be contacted with any necessary advice.

Now the VERY worrying thing. My GP had arranged for blood tests for U&E (urea and electrolytes – kidney function) and I had the blood taken at Bradford Royal Infirmary. In the clinic, I was advised that there were no results ‘because the sample was too old to analyse’. Well this was surprising for a sample taken in BRI, but much more concerning was that my record showed the sample as having been arranged from the wrong surgery and one totally unknown to me. So what has happened here? Has someone else got my bloods, will I have to have the tests repeated, how can this happen? I’m not one for catastrophising but let’s imagine that some results were in my files and those results led to a particular action being taken that was detrimental to my health! And what about the patient who has maybe actually got my results? OUCH!

This cock-up was the straw that broke the camel’s back and I have decided that I will be putting in a formal complaint specifically relating to the various incidents of administrative blundering. I want to restate that at every point (except for the initial discussion with the stand-in GP) my medical care has been good to outstanding but the administration has been miserable and primary aim is for improvement not retribution.

I’ve had another Goldman Test (optical field of view – remember?), which shows a two-line increase in acuity and some recovery already in field. The blind spot is reducing and peripheral vision recovering. This is good and it was suggested that it would probably recover further as the swelling around my pituitary reduces further.

So how am I now? Medically – very well indeed. No pain – OK, one paracetamol’s worth on one occasion the day after surgery and I could easily have put up with it but why should I? No bruising, Hardly andy congestion (I had been warned that my nasal passages/sinuses/head could well feel congested for a while. No after effects beyond a nose that kept blocking for about a week but has now cleared very well. Mentally – as bright as a bee, having recognised that the 13 months of pre-operative hassles had probably been having more of an impact than I realised at the time; also hacked off (that’s the polite version) that the administrative hassles continue unabated.

Finally, I have started to think about the extent to which the whole system is (or more likely is not) connected in such a way as to make the patient journey smooth and effective. More on this soon.