On Monday, I went to psychiatric services to see my psychiatrist and break the news to him that I’d come off a neuroleptic, gradually, over nearly a year, and that I intended to withdraw from a ‘mood-stabilizer’ similarly. It was obvious that the hospital had got wind of something when I got there but, instead of relating this to me and expressing any concerns they may have had so we could discuss them, the type of odd and counter-productive behaviour I have had to put up with over a 14 year involvement with psychiatric services continued, with the patient disempowered in a process keeping them outside of knowledge. That failed approach has already been planned for way in advance of recent times. I know that. Psychiatric services know that. But they will use that to act against me, too. The world could and should be a far simpler place. And all this for what? Whatever issues services have, they should have very little, if anything, to do with me. That they probably can’t see that speaks volumes for their approach down the years.
In a letter I’ll include at the end of this post, I spell out a few things that may lead to a move from the medical model, which faces impressive and widespread calls for significant reform even within psychiatry, to a social approach to mental well-being. However, in the letter, I call for psychiatric services to not escalate matters, as they have a pattern of having done for years, but have an open mind and give an alternative approach a good chance of success. It already seems like that will not be allowed to happen, for whatever side issues there are, which I’m barred from even discussing, and which few people who aren’t aware of the stunts that get played would believe. They are basically designed to engineer mental distress to a degree which is meant to necessitate a medical approach, with no room for alternatives ultimately allowed.
I will say one thing, which seems to go beyond the realms of credibility, though that’s the way it’s supposed to be seen: during my last spell in hospital, the Consultant Psychiatrist there blatantly lied to a tribunal which is supposed to act as a safeguard for me. That’s illegal. Or it would be if the tribunal was little more than a show trial, a mock-up, the outcome of which had clearly been decided in advance, which is why I refused to attend another ‘safeguard’, which was a hospital managers meeting at Worcester Royal Hospital. Tip of the iceberg, a lot happens when psychiatry gets carried away, as any institution which can impose meaning, power and a preordained agenda, without safeguards or access to human rights, unless those rights square with psychiatry and fall within a psychiatric framework, based on the dominant medical model. You don’t believe me? You’re not meant to. That’s the beauty of it.
There’s not a lot I can do. Despite the fact that I know that medication is a detrimental long-term strategy, and my well-being does not require it, if precedent is anything to go by, my environment will become so difficult to deal with that I will be forced onto the medical model, which will then – yet again – be used as ‘evidence’ for the long-term ‘need’ for a medical approach. As my last admission to hospital demonstrated, it is almost certain that there is not a lot services will not do to try to accomplish this, with the prospect of engineering an embittered, disempowered individual who knows that he lacks fundamental freedoms which everyone should be entitled to. Sounds bizarre – entirely unbelievable – but I have enough to go on to rationally conclude that. And it’s almost certain that there is nothing anyone else can do about it, either.
Letter to my Consultant Psychiatrist
9 September 2014
Dear Dr S,
Firstly, thank you for your flexibility during my appointment with you yesterday. I had been, in retrospect, overly concerned about how you might react to what I had to say, but I was reassured that you took such a considered approach to the encounter.
You raised the issue of whether, if my health deteriorates to an extent you believe necessitates anti-psychotics, I would take Quetiapine. I tried to be non-committal, not only because I don’t think anti-psychotics are the long-term answer and want to find a better, workable solution to the cycle of long-term medicine followed by withdrawal, but also because of wanting to deal with any issues as they arise, if they do. I have to admit too, though, that my initial reaction was to be opposed to any anti-psychotics at all.
However, though there have been many things I have been doing since my last admission to hospital to address my psychological and social approach to things, which I think bodes well, especially if built upon, there are naturally going to be concerns based on precedent, not least the severity my condition has reached at times. So, after considering this, it is clear that you need to prepare for the worst as one of the potential outcomes of my proposed gradual withdrawal from medication and hopes to shift to a more social approach to my care. Therefore, it is only fair to be cooperative on this and try to find a solution with you. From what I understand, anti-psychotics can be beneficial in the short-term to avert the worst of a psychotic episode or to recover from one, though there is also evidence of the benefits of this being only short-term for people with my diagnosis. Therefore, if you are open to it, I would welcome discussing with you the available medications and strategy so you can implement a plan in the event that things turn for the worst and what the full options are beyond that. I am more than happy to include the use of an anti-psychotic in that, while wanting to keep our options open as to which one would be the most appropriate in light of the above. Your concern may be that this could impede the benefits of a long-term medicinal approach, but even if that was the case, working towards this proposal is more flexible by adjusting around precedent, providing necessary safeguards and keeping our options open.
I also want to give you some additional feedback about the appointment, which I offer in the hope that you will find it useful. As I have mentioned, your flexibility was very encouraging, but your concerns were, too, as they demonstrated that you will keep a close eye on things and try to prepare for any negative eventualities. A disappointment was that you seemed to be completely uninterested in social approaches to mental health, as these are the approaches I have always ultimately considered more viable for me, all things considered, and have some interesting advocates within the psychiatric profession as well as outside of it. Although I would not wish to offend you by trying to tell you how to conduct yourself professionally, I have to hope that, as my clinician, you would be more open to such approaches, increasing the options in your clinical toolkit and, therefore, those readily accessible to me. In appearing to be so uninterested, that may lead to a situation where, while your aim is clearly to act in the interests of my health, you could unwittingly reduce the chances of their success in favouring the medical model of psychiatry to the exclusion of all other options, while a social approach is also in the interests of my health and may eventually prove to be more beneficial. You might never know if you are reluctant to explore the option, which would be a pity, not only for me personally but, I think, for you professionally.
Another concern was your unwillingness to prescribe tranquilizers. I understand that they can be addictive, but I think on the basis of my general approach to medicine, you can trust that, on PRN, I would not abuse them or remotely risk addiction. Moreover, my experience has been that psychosis emerges after a prolonged period of intense stress, which builds up over time, often initially from quite insignificant moments. That can be external stresses or internal ones. Regarding external stresses, my home life is better now than it has been since even my first involvement with psychiatric services. This is down to basic common sense as well as social approaches I have learned and applied, though I am at the very early stages of looking in to these approaches. For example, my mother and I have openly and rationally discussed our stressors and overall relationship and why we think it has deteriorated at times, implementing numerous improvements. That has led to a greater understanding between us and an everyday life that is healthy and enjoyable. My extended social life could be improved, but that is also without stresses, as I do what a lot of people do these days and make use of technology to keep in contact with numerous people, many of whom act as a support network when needed. Overall, my home and wider social life are as good as I can expect and hope them to be. I’m content with both.
Internal stressors are another matter. Again, though, because I find that psychosis tends to emerge from prolonged, intense stress, via a poor response to environmental events that go unresolved, I believe a tranquilizer could be effective at times. Of course, it would not be as effective as an anti-psychotic if psychotic thinking were to emerge, especially if this was an exclusively internal process, but as I have mentioned, I am sure you will now be able to plan for that. However, a tranquilizer may be a viable option to offset at a very early stage relatively minor stress so it does not lead to something significantly more problematic. As my body adjusts to changes in its chemical composition, there are naturally going to be times that are stressful, but which are not necessarily psychotic in nature. For example, if there is an increase in dopamine receptors following withdrawal from a medication, if that withdrawal is handled in a measured way, the changes and response should be less dramatic, though still delicate, because of potential changes in thinking. Though I think both positions can be argued quite easily – that you could use anti-psychotics or tranquilizers for this – the information I am going on suggests it is just as valid to say that tranquilizers can help with this process, allowing for moments of calmness and reflection which can assist and even extend the integrity of the personality at crucial times. This should, in theory, allow the body and mind to make its adjustments gradually and adaptably, without unnecessary extremes.
Because I also spend a lot of times indoors, I sometimes get mild cabin fever, which I’m accustomed to managing and which doesn’t last long, but during this time of withdrawal, a tranquilizer may occasionally be beneficial. Unfortunately, we did not develop this discussion, so I could not clarify my stance and get your specific feedback on issues around tranquilizers. I think a concern for us both is that a deterioration in terms of my mental state – whether triggered externally or internally – could quite easily have a knock-on effect at home. Personally, I cannot see that, now, though I also cannot rule it out, so, although it may turn out to be unnecessary, had we developed some strategy around this yesterday, I would have been a lot happier and I hope it would have assured you in some ways, too.
A socially-based approach could make a significant difference in outcomes, rather than what I am concerned may happen, with existing support avenues doing little more than wait for a time to medicate, having prematurely dismissed the support I am requesting, without even trying. Despite undergoing Relate counselling that has proved very helpful in the long-term, however, similar approaches have never been followed up by any of the psychiatric services I have been involved with, which I think has been a great pity.
This may be down to some of the ideas in services towards me. During my last hospital admission, a senior nurse said that I am ‘a danger to men, women and children,’ when he became frustrated that he could not give valid reasons as to why it seemed I was being denied my rights. The Consultant at the hospital, also had a sense of urgency in stating that ‘there is something in you’. Both, of course, are unscientific, but have to have come from somewhere, but not from any potential or internal bug I possess. Now, not only is this a long time ago for me to have accepted that it is not really relevant to my everyday living, but I am old enough to know the difference between form and content, appreciating that what people say does not always equate to what they mean, but these are strange things to say, regardless of whether they were believed, especially in their extremity. That services may actually hold such views and concerns like them has never been addressed and, although they should realistically have nothing to do with me, may be a reason why there is a problematic and detrimental reaction to what I am suggesting. The additional, wider concern should also be that if such claims, which often lack the processes to be openly discussed and resolved, are being made on a frequent basis to vulnerable and suggestible people, such people face the danger of internalising them or taking them to heart, whereby they could raise not only their risk level but also complications for their mental state.
So, although we are on our way to implementing safeguards in case my mental state deteriorates, I think it is also wise to consider how the relationship between me and psychiatric services has often been one of escalating rather than de-escalating matters, especially during medication withdrawals, with services sometimes seeming to see this as appropriate in terms of care to get me back on medication, when far simpler strategies could be more effective if that possibility were seriously entertained. Because the dynamics of the typical relationship between a psychiatrist and their patient differs substantially to that between talking therapist and a client, it may be helpful if we think about why my approach to psychiatry is sometimes seen as problematic. The latter relationship is more appropriate to me because it’s less a process of judgement within a hierarchy, more a discussion, leading to rational solutions, fully taking into account the views, perspective and intentions of the client in a more modern, egalitarian and empowering environment. So, maybe instead of this being seen as a problem between me and psychiatry, it would be more productive to consider and work around what I have thought all along and even requested at the start of my involvement with services: that the design and methods of the talking and social approaches have always been more appropriate for me and my well-being, as they fit in with my personal history and philosophy. If that conflicts with the view of services, then I suggest we have lacked something significant somewhere along the line. So, although I know you find it difficult to relate to how I approach you because of your perspective, I hope you can appreciate that it can be the same for me from mine, but also that it’s not a measure of disrespect by any standards or a battle of wills, but more a question of the inappropriateness of the model we have consistently worked on, with little substantial success, for all concerned.
While I am also looking into the methods and approaches I have proposed a greater emphasis on, though, it is not ideal for a lay person to try this alone – it being always beneficial, instead, to have professional, experienced and informed support to assist you in your development. It should be a simple matter of choice, though I acknowledge there are complications that need working on which are as much to do with me as services. So, despite agreeing with you that psychotherapy, for example, should wait until after I have recovered from medication withdrawal (fingers crossed), that should not necessarily mean there is no counselling or similar support available at all as I go through that process, to help with it. That could be with you, though my reservation with that is, again, that this is not your speciality and you may have some sort of funnel approach, seeing all options as inevitably necessitating medication in the long-run and working towards that conclusion, which would be unnecessarily detrimental to the alternative I hope for. Ideally, as I tend to benefit from considering different people’s informed opinions on important matters, it may be wise to consult my G.P. and someone who specialises in socially-based therapies, as, especially with the latter, their perspectives may differ to yours in relation to a specific non-medicinal path. Although this conflicts with some of your advice, it does not conflict with your ultimate goal of securing my health, so I hope it is an option you are not too uncomfortable with. Moreover, talking therapies, at least, are supposed to be more readily available to patients, these days, and are also offered to those both taking medication and with diagnoses like that with which I am diagnosed.
The advice I have come across on withdrawal makes clear that withdrawal from medication can all be quite a rocky road and there are times when it looks like symptoms are re-emerging, while this can be more a symptom of adapting to chemical changes within the body which tend to decrease in time, if the process is properly managed. Even though I acknowledge that both can also be the case simultaneously, I am hopeful that you will be able to distinguish this and act accordingly, should such issues arise. You did mention that it can take months for deterioration after medication withdrawal, but this was a very important piece of information both for a medical as well as a social-based perspective and it was something I will have to keep paramount in my mind in the coming months, at least. However, I have to repeat that I would be even more hopeful of all this if you were more receptive to these social approaches to mental health within psychiatry than you appear to be, as that could be an option to build productively on your flexibility, and does not necessarily remove the option of the medical approach once and for all, but does not instinctively rule that out, either.
You were very personable, as usual, which is always nice to experience, but you also seemed uncomfortable about what I am doing in terms of going against much of your advice (even though you are allowing me the opportunity to try a different approach). Your seeming discomfort is entirely rational, but as I think you already knew we would reach this stage – I hope you do not take offense about the withdrawal, as you seemed to know that was going to happen far sooner than I did – and that the disagreement is of concern to us both, I would have been more satisfied had the appointment progressed further so we could have discussed matters and options more. In other words, you did seem a bit eager to cut the appointment off short, where further discussion may have led to observations, options and strategic points which may have been of benefit in the long-run, not least in alerting me to potential physical reactions, behaviours and thought patterns I may need to be mindful of. Furthermore, despite disagreeing, we seemed to be getting along well, which also bodes well, whether things go well or take a turn for the worse.
As I tried to clarify, I am receptive to what you have to say – I may disagree with you about some things, which can understandably affect your professional pride and I apologise if that is the case. I do listen carefully to you than I think you realise, always taking away with me what often prove to be valuable points to consider and reflect upon. That is a common way I approach problem-solving (when not in a crisis) – not making rash decisions on the spur of the moment, but taking time to think things through when that is appropriate, aiming for the best solution in the circumstances – so I hope you consider this in future and realise that, although I may say things that sometimes sound dismissive, disrespectful or uncooperative, it might help to know that with me such things are not always as they may initially seem. Again, I think that I just find the psychiatric consultation process to sometimes be insufficient for my needs, though that is not an issue specific to you.
I understand that all of the above may still be unduly dismissed and I think I can see it from your point of view. Though I doubt you will do this, it is as easy to caricature someone with such ideas as it is to caricature psychiatrists and psychiatric patients, something which in the cold light of day is best avoided. However, with ideas like biological determinism and reductionism, insight, psychosis, relapse and so on, it is always going to be difficult to de-escalate concerns and simplify the rationale for a different approach, with services more inclined to default to a set standard, regardless of its ultimate appropriateness for me. I hope we take into account the butterfly effect, try to work in the interests of my well-being with an open mind and, regardless of whether or not I get it right this time, acknowledge that we will have a plan in place that should go some way to addressing potential concerns now and in the future, while also giving another approach a good chance of success. Apologies for writing such a long letter. It would be silly to try to cover everything I could, but I thought it only fair to give you a sufficient account of my thinking for you to be able work with.
Today, I have an appointment with Dr K, who I will give a copy of this letter to in case you wish to confer (which I would personally welcome), and I will request that he writes to you about the weight and heart issues around Olanzapine, along with the status of my physical health after my latest blood test.
Again, thank you for your flexibility, I hope you accept my feedback in the way it is intended while I am also open to discussing it with you if you wish to do that, and I look forward to my next appointment with you, but I hope that is without what turned out to be the unnecessary apprehension I felt yesterday.