Today is not a good day, it is a day for looking back, a day filled with regret and sadness. On 14 September 2013, I attended a musical recital with friends, a quartet, though I cannot remember much about it. That is the last day I remember still being able to function after tapering off Nitrazepam between January and April 2013. Between April and September 2013, my health had been getting worse but nothing prepared me for the catastrophic events that were to follow. I am not one for exaggeration, indeed I tend to be quite the opposite, so when I say catastrophic, that means it really was quite simply horrific. I do not know why I have been so badly affected, I am sure my doctors do not have the least idea either, this is clearly beyond their understanding just as so much is beyond their understanding. What is certain is that my brain no longer functions normally, I cannot walk far, I cannot stand for long, I cannot process written text beyond a few paragraphs, I cannot write by hand for more than a few minutes, my left eye is damaged and my eyesight will never recover, I have difficulty processing speech, I lack spatial awareness and I still have some depersonalisation and derealisation. For three years my mind was disassociated from my brain and body so that although I was fully aware of what was happening, I lived in a chemical haze of extreme optimism which bore no resemblance to what was actually happening. I then experienced spontaneous shocks to the back and front of my brain and once again my mind, brain and body seemed to be reintegrated and I understood fully what I had been through and I could once again feel my legs. I also became desperate and suicidal. That gradually improved as the months passed. Whatever the reasons for the catastrophic effects on my health, there is only one reason for what has happened and that is the fact that I tapered off 5 mg Nitrazepam in 2013 over a period of three months. There is no other reason whatsoever for the subsequent devastation to my health. Prior to that I was a functioning human being.
The very worst aspect of all this has been the attitude of the medical profession. First of all it was my GP, the man who advised me to stop taking Nitrazepam. When he realised I was damaged suddenly he had no knowledge or expertise of slow and safe tapering, nor could he offer an opinion on what had happened to me. It seemed ignorance was to be his defence. Yet he took it upon himself to suggest I stop taking a drug I had consumed for 40 years even though I expressed my concerns about following this course of action, concerns he did not discuss. One of his GP partners did not want to get involved. The psychiatrist whom I know well clearly wanted rid of me, he said my state of health was nothing to do with drug withdrawal. The private neurologist also had no interest in me, he could not even answer my questions, he was very happy to take my money. My GP had told me it would be a waste and now I know why. Thankfully the NHS neurologist did admit it was the drugs and this was then confirmed by an addiction psychiatrist .. I am not an addict and have never been an addict. Yet, the only doctor able to give an opinion works in the Substance Misuse Service. How can this possibly be?
I have been campaigning online for some time now and contributed to the petition to the Scottish Parliament. I have appeared in the press, on radio and TV. I have spent a great deal of time on Twitter trying to raise awareness and attempting to engage with Royal Colleges, leading psychiatrists, politicians and Government Ministers. This has been one of the worse parts of the whole experience. RCGP has partially blocked me and RCGP Scotland has completely blocked me. I assume they did not like my accusations about my GP but cannot be sure. I am very honest and I would never say anything that I did not believe was true. Of course I have my own perceptions of what has happened and others may see things slightly differently but I do not think my accounts are wildly inaccurate.
I have met many other campaigners on Twitter, patients but also doctors. It seems that we are all campaigning for the same reasons .. we cannot abide the culture of the NHS, the denial, the cover-ups, the bullying, the dishonesty, the pillorying of patients or families who dare to complain about the harm they or their loved ones have sustained. The NHS is supposed to be a health service, it is supposed to care for people. We all known mistakes are made, many many mistakes, some understandable others due to sheer negligence. However, to cover these things up is a deliberate choice and it is clear that the NHS will choose to inflict serious harm on patients and their families by denying the truth of what has happened. This to me is not the hallmark of a caring organisation. I therefore do not love the NHS, I do not respect it, how could I possibly have high regard for such an organisation. We all appreciate it is free at the point of use and we appreciate the many hard working members of staff who work in it. Nor can I respect the profession of medicine whose members are also capable of inflicting serious pain and harm on patients though their silence, denial, deflection, half-truths and misinformation. I see the Royal Colleges shamelessly promoting themselves on a daily basis knowing full well the immense harm that is being caused. Instead they live in complacent denial or so it would seem. So much of this harm could be avoided but those who could take steps to make things better for the many members of the prescribed harmed community choose not to do so. The NHS and medical profession will of course put their own interests first, knowing full well that in so doing they are causing immense pain and distress. Government Ministers and Civil Servants will of course do likewise.
I listened to the recent debate in the Scottish Parliament on suicide prevention, once again the existence of the prescribed harmed community was not mentioned, we are rarely ever mentioned. Yet, all who participated were keen to stress that “every life matters”, I was left with the feeling that my life matters not a jot to those who claim that it does, however much they might claim otherwise. But of course the Scottish Government has to protect its own interests first and foremost, after all it has presided over years of mass prescribing of drugs of dependence, the source of the widespread harm. If I had campaigned on mental health I would have been applauded for doing so by anyone and everyone, however I have chosen to campaign on iatrogenic harm, there is no applause when you choose to do that except from those who have been harmed themselves and a few brave doctors who stand alongside us and share our pain. I cannot stand hypocrisy and everywhere I look that is what I see. To be iatrogenically harmed is a far worse stigma than being mentally ill. If I had a mental health issue I would be encouraged to speak about it, to shout it from the rooftops, to raise awareness, to reduce the stigma …. I would be given a megaphone.