My dealings with medical authority lead me strongly to believe that the protection of professional reputation takes precedence over patient confidentiality which in turn takes precedence over the fundamental human rights of the patient's immediate family.
My wife had stayed 'well' since her last relapse in 1986. Over the years her dosage of medication had been reduced in carefully managed stages. However, in the summer of 1999, I noticed an ominous blip in her condition. I could not contact my wife's mental health keyworker myself directly because in that condition my wife is suspicious of all I do and watches me like a hawk. I managed to telephone her sister who contacted my wife's keyworker for me. The keyworker responded by visiting my wife. I think a temporary increase in medication was suggested but I do not think my wife ever took any extra medication. She was still on her depot injections. Happily, the incident blew over and dissipated of its own accord.
There was another ominous sign on 20 March 2000. Something made me put a cryptic note in my diary 'ETR=3-4 weeks'. By this I signalled to myself that I expected my wife to relapse in 3 to 4 weeks. I was wrong, and being reluctant to entertain the idea that my wife may become very ill again, I never mentioned this to anyone at the time.
Nevertheless, the incident of 20 March 2000 concerned me sufficiently to make me decide to keep a special note of events which caused me unease about my wife's state of mental health. At first I kept this in my normal desk diary in coded form. Over that spring and summer, my impression was that my wife's mental condition was worsening. By the autumn she had started to become paranoid and hence highly suspicious of anything I did or wrote.
For this reason, on 19 September 2000 (my birthday) I decided to transfer my special diary to an HTML file entitled Diary of a Relapse which I kept on my Web server. The file contained an instruction to prevent it from being indexed by Internet search engines. There were at that time also no hyperlinks to it. It was therefore accessible only by specific individuals to whom I had given its Web address. The likelihood of anybody else finding it was practically zero. I had posted it on the Internet as a way of communicating to specific individuals what my son and I were going through as my wife advanced towards total relapse. From 19 September 2000 I wrote up and posted events as they happened - or at least as closely as possible to when they happened.
My diary is solely my perception of what I saw, experienced and suffered under the extreme circumstances to which events were subjecting me, and the overwhelming impressions they were etching into my mind. In my diary, I viewed the world of my immediate experiences as a black box interface across which was flowing a resultant behaviour. This view does not take any account of the complex motives or convoluted processes behind the interface which may have been the constructors of the resultant behaviour I was experiencing. As such my diary is a factual account. If any relevant events are missing from my diary it is because I was not aware of them, not involved with them or because their occurrences were not communicated to me. Other things such as times and quantities are what I heard or was in good faith led to believe.
About a month after its completion, I received a threatening letter from the organisation which employed some of the people whose names appeared in my diary.
I cannot pretend that I was anything other than surprised, confused and disillusioned by what I perceived to be the behaviours of some of the people mentioned in my diary. Nevertheless, my diary does not specify, suggest or imply any particular motives for these apparent behaviours.
My diary is not a complaint about professional conduct. I have no way of knowing whether or not the individuals concerned were doing their jobs exactly according to law, corporate policy or established professional best practice. My diary is simply my account of how events impacted upon my consciousness in 'the heat of battle'.
The letter clearly threatened me with legal action for an alleged tort of defamation against these people if I did not take action to conform to one of three options offered in the letter. These were as follows.
(a) The "Diary of a Relapse" is removed from the Internet with immediate effect and that there is no further publication (either electronic or written)
This I could not accept because it would leave me completely gagged before my peers and prospective sympathisers on the Internet - my only free and unimpeded channel of communication.
(b) Statements causing specific offence to the staff concerned are identified by the Trust and these statements are deleted
This I could not accept either. The sole purpose of my diary is to tell others how my wife's illness affected my son and me. Removing any such narrative would reduce it to not much more than a list of dates of the various comings and goings. It would thus become a pointless waste of Web space.
(c) You permit the Trust to specifically comment on some of the content and these comments by way of reply are then incorporated in your published diary.
This at first seemed to be a reasonable option. However, it would turn my diary into an amalgam of conflicting individual views alluding to some universal view which cannot actually exist. My diary would no longer be my perception of events as they impacted upon my son and me as the family of a relapsing mentally ill person. Since this was the sole purpose of my diary, I could not accept this option either.
In any case, those concerned are perfectly free to post their own version of events on the Internet. Personal Web space and Internet access is now available at no charge. Alternatively, they could post it on their corporate employer's Web site. And they can do either, knowing full well that I certainly do not have the wherewithal to sue them for tort of defamation.
The offer of this option seems strange. If those involved were prevented, presumably by some law relating to patient confidentiality, from communicating these things to me during the crisis when I was desperate for them to respond, then what has released them from this obligation of confidentiality, thus making them now free to comment?
What was clear from the letter was that if I did not conform to at least one of the above options, it was very likely that I would be sued for alleged tort of defamation.
I am told that defamation cases are notoriously expensive. It is definitely a game played only by the rich and corporate. I exist on the miserly misnomer called welfare. My family and I barely managed to survive. We certainly could not finance my defence in a defamation case. All our worldly goods would be consumed within days. We would become homeless and destitute. Even to contemplate defending such an action would, I am told, be economic suicide, leading in all probability to physical suicide. I am also told that Legal Aid (free legal advice and representation) is not provided for defamation cases. I therefore have no access to legal advice or representation before the Law.
Those I have allegedly defamed, on the other hand, stand protected behind the bastion of their organisation with its comparatively infinite human and financial resources. They have no fear of ruination - or even being in any way personally out of pocket - in the event of such an action taking place. Besides, whatever I may say, however publicly, could exact no practical damage to their careers or professional reputations. They will keep and carry on with their jobs as if nothing had happened.
The Universal Declaration of Human Rights as adopted and proclaimed by the United Nations General Assembly in Resolution 217 A (III) of 10 December 1948 contains:
It doesn't seem very much like it to me. Discrimination resulting from a gross disparity in economic circumstances is still discrimination. This case would therefore be equivalent to a fully trained and equipped army waging war on a single unarmed man.
Were I to leave my diary on the Internet unchanged, I would doubtless be sued for alleged tort of defamation, which I have no means to defend. I would therefore lose the action by default. The costs would consume all my worldly possessions. I would become immediately homeless and destitute. My UK Internet Service Provider would be forced to remove my web site from its server. Were I then to transfer my web site to a server beyond UK jurisdictions, I would likely be held in contempt of court and subsequently imprisoned.
Alternatively, I could remove my diary from the Internet, crawl back under my stone and suffer in silence as I have done each time before. Alone I may well have done this again. However, when I saw the effect all this was having on my son, I decided that my diary had to be published. After all, how many thousands of other relatives of the mentally ill are likewise being made to live in enforced silence through such torturous tribulation?
I thus became burdened with a mission to air my experiences in an open forum in which all could comment - be they patients, medics or relatives. This simply could not happen within the medical authority's own Complains Procedure in which the distressed relative stands as a lone individual within a forum managed and controlled by the medical team and their bureaucrats. I see this so-called self-policing as nothing more than a criticism containment mechanism. The Internet is the only available fair and open forum.
Since I could not accept any of the options offered in the letter, I decided on an option of my own. This was to remove the names of all those involved, replacing them with labels. I also removed all geographic references. The true essence of my narrative is thus preserved, as are the precious careers and reputations of those I have allegedly wrongly defamed, safely hidden as they are behind a new wall of anonymity.
I live in hope that the beast is hereby appeased. It is best to live and fight another day when ever possible. However, if it is not, then since my children are all now grown up and I do not need my house, my possessions and my freedom so much any more, I may well decide it is now time to publish and be damned. If so, nothing will be hidden.
When I contacted my wife's keyworker on 23 August 2000 I had expected my wife to be put back on a small corrective dose of medication. Then, I am sure, all would have been well. But my communications were not acknowledged. My observations seemed to carry no credibility. No effective action was taken. She was left to fall into relapse.
There are many possible reasons for this. Perhaps my wife's keyworker simply could not be bothered. Perhaps she was too busy. Perhaps she thought I was over-reacting to my wife's behaviour. Maybe she regarded me as an ignorant layman who did not know what he was talking about. Perhaps she felt bound by English law or corporate policy to do with patient confidentiality not to respond. This latter is the reason I had at the time unconsciously assumed. Or was there some other reason for her behaviour? In the absence of communication I can only speculate.
Whatever the reason, the effect was unmistakable. My son and I were left to endure two months of torture. My reward for speaking out about our plight was then to have our stress and damages compounded by a real and present threat of litigation, which would precipitate the economic annihilation and inevitable disintegration of our family.
English law has thus - by no more than a threat - protected the persons, properties, interests and reputations of the rich (professional) by gagging the poor (layman). It has thus here fulfilled its designed purpose.