Yesterday I finally had my first appointments at the hospital where my brother has been treated. This is near to my parents' house and so we had plans to go and see them for lunch and dinner before returning home; it all made for a long day.
Being nice, I will only say that at this hospital, the general approach to patients is not quite as good as my local transplant centre, but perhaps I've just been lucky. We arrived early, not wanting to risk the London traffic, and found our way around this slightly out off date building to the Renal Dept. Eventually I met one of the transplant nurses (although the one looking after me was on holiday) and asked for the obligatory blood and urine samples; I was much amused by the phlebotomist's tourniquet having Dracula and vampires on it! Then I was off for an echocardiogram at the ECG Dept which is where I shall also have the treadmill test in a couple of weeks (the day when I see the surgeon); I was told yesterday that actually I couldn't have that test on that day - it was a mistake. Happily whilst I was being seen, my wife spoke with them and I now have a 9.00am appointment for that same day (as I really wouldn't want to travel all that way for such a frankly trivial test).
The actual echocardiogram was fine, it seems, but I found the posture adopted was a bit difficult. I was asked to lie on my left side with the display behind me (are they still afraid of the patient seeing his own data on the screen?). The table was canted up as well so I was bent sideways at my waist, and then I was asked to bring my left arm up over my head! Try doing this at home, add in a sometimes bad back and neck, and see if you could hold this for 25 minutes! A large pillow to support my head would have been a good start, and if they wanted my left arm out of the way, I would have preferred to put it on the end of the table. I actually used it to support my head, but then my elbow started complaining... This procedure did not finish until at least 20 minutes after my consultant appointment, so there was another long walk back to Renal and another wait, before seeing the consultant almost an hour late.
On the phone, the transplant nurse had said that the consultant was "my" consultant, and his job was to protect my interests. I had not quite appreciated this aspect before; he is required to be (and is) totally independent of the team looking after my brother, to ensure that there is no conflict of interest. He went through a lot of my history using his PC but, to my surprise, there was no data on it from the tests last year. It seems that the CD with all that information is still with the absent transplant nurse - I know it was sent because I posted it myself last August, and she had confirmed that she has it.
[Slight drift off topic - I used to work in IT, and I have always thought that the story of the NHS IT system under the last Labour Govt was scandalous. They wasted well over £10 billion on this project and kept on giving more cash to the useless people (principally Accenture, formerly Andersen Consulting) who kept on getting it wrong. Eventually it was gently terminated by the new government in 2011. The first aim of such a national project should not be to try to design and implement one new system for the whole country, but to make it possible to link the existing systems together so that data can be passed to another hospital, as in this case. To do this you have to define a common standard for the data and define the export file that you need to send; then the only expensive bit of new software is a process to import the datafile into each individual system. This they clearly failed to achieve if they cannot import data from a CD from a different hospital trust; can I please have £1m for showing them the way?]
Back to the topic: after lots of warnings about the risks, my consultant declared himself happy that I was fit to donate, and then thanked me for doing so. He followed that up by saying that of course I can still change my mind right up to the actual removal of my kidney - there has to be a point of no return somewhere, after all.
We left this old hospital with its difficult signage, dated and tired decoration, multiple levels and silly (and expensive) car park, and spoke of the hospitals back home. In several different departments of three separate hospitals in the same group near where we live, I have had such consistently wonderful service from helpful and lovely people in the last year. What is it that makes hospitals so different? When you go somewhere else, the different culture is most noticeable, and it really affects the patient's experience. The actual operation will be done at another larger and more well known hospital so we're not too worried about this; however I couldn't help wondering whether Gordon Brown would have been better off investing all that cash in better facilities rather than believing those *** IT consultants!
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