After the initial skirmish with Medway Hospital, it is now about 4 months since I embarked on a quest for minimally invasive treatment and managed to get referred to UCLH in London. Today marked the end of that quest; the frog finally lost his grip when nearly at the top of the well and plummetted back to the bottom!
Over the last 7 months, I have had blood tests, scans (2 MRI, 1 bone), an endoscopy and two biopsies. I have been charming, scheming, difficult, threatening, arrogant, bloody minded, downright unpleasant and probably a whole load more. Basically I have done whatever it took in order to get the NHS to bend to my will, accept me as the customer as well as consumer, and to do the job that it was created to do.
(A hint here on one of the best ways to get senior clinicians to do their job: think about what / who has influence over their professional lives. I am fortunate in that I could quote the names of people that either I or my partner actually know and could use in extremis; the mere mention of a few of them has reduced very senior clinicians to jelly. I have also invoked the power of the Care Quality Commission (CQC) corporate, who were brilliant. You may not have the same connections, but the person you wish to influence will not know that. The main hint is: do your research, figure out who the key players or organisations are and use their names to gain control.
You need to think yourself into the role and, if you can carry it off, just dropping the name will give you some very interesting results.(I would recommend reading "The art of war" by Sun Tzu and "The Prince" by Machiavelli.............). A name which has particular resonance is the Director of Hospital Inspection at the CQC.)
As you may recall, last week I received a telephone call from a junior doctor at UCLH who informed me that they would not be offering me treatment. My response was to insist that I see the professor at this morning's appointment to discuss this in more detail. It is at this point that I shall do something I never thought that I would do: apologise to the professor for the some of the tone of the last blog post. I still stand by the view that getting a junior doctor to convey bad news by telephone is extremely poor practice, but I now know the reasoning behind their "decision", hence the apology.
As usual, the nhs was down to its usual administrative standard: the clinic started at 12:30, my appointment time was 12:30, I was actually seen by the professor at about 12:50. Much better than any other clinic I have been to so far, but...............
Once I got to see him, I have to say that Professor Emberton was excellent. I challenged him about the making of a decision without involving me (for which he apologised) and he took me through the reasoning. I know that some of you might find it a bit weird, but it was fascinating to be taken through a very high resolution image of the tumour and a detailed explanation as to why he thought that HIFU would cause more problems than it solved. His line was that he, of all clinicians, would always want to provide the most conservative treatment possible, but that in my case HIFU would definitely result in permanent incontinence (one of the things that I specifically want to avoid). The tumour sits directly on the urinary sphincter and the amount of energy used in HIFU would destroy both. At least with radiotherapy I stand a chance of less damage.
A very short conversation about the relative merits of surgery vs radiotherapy, in which he fully agreed with me that surgery is a last resort in this century and this country, and he referred me back to Medway although. At my request, the referral was directly to the oncologist which should make things a bit quicker.
Given my complete lack of faith in Medway Hospital's ability to administer the fabled alcoholic celebration in a brewery, I asked for copies of the biopsy reports and high resolution MRI scan. The poor woman on reception tried to print off the biopsy reports....and tried......and tried.......but the UCLH IT system was having none of it, so I left my email address and asked her to email them to me.
To get a CD of the MRI meant a trip back to the imaging department in a completely different part of the hospital 10 minute and £10 later, I emerged with the CD in my bag. Full marks to them!
Checked my email before going to an evening meeting: lo and behold, copies of the biopsy reports! I am now equipped to supply Medway hospital with the information that they are bound not to get themselves. In my version of a health service, personally held records would be the norm; we have a pretty powerful incentive to keep our own records safe and accessible.
I have just glanced at what I have written (not in detail, I rarely read through a second time, but just the outline) and noticed the extraordinary number of acronyms. Apologies for that, I hope that you can understand them all. If any of them is confusing, drop me a line and I might put up a post which consists of nothing but acronyms and their meanings!
..................and tonight's song. One I had not heard until I searched for something else..........I agree (you will have to listen to it now!)
https://www.youtube.com/watch?v=quiPAqG8No8
