ROYAL EDINBURGH HOSPITAL PATIENTS COUNCIL MEETING
2020 Royal Edinburgh Hospital
A VISION OF SERVICES AFTER THE REVIEW OF THE MENTAL HEALTH ACT
A PERSONAL VIEW
BRIEF:
Would you be willing to engage in a bit of futurism and talk about what post-review mental health services might look like? I'm curious what life would be like if there was little/no compulsion - how would we cope with people in huge distress? How would we balance the need for people to be safe with their need for freedom and self-determination? How would we cope if rather than focusing on best interests, the most important thing was our rights, will and preferences whether or not professionals agreed with our choices? I'd like to get a wee thought experiment going with the group and try to imagine a world where our human rights are fully and equally respected.
Hello everyone;
Many of you will know that I work for the Mental Welfare Commission and that I used to work for HUG Action for Mental Health which acts as a voice for people with a mental health problem in Highland.
I now have a role on the executive of the review of the mental health act and am still finding out some of what that might involve.
I will talk about that a bit later, but first I need to describe what I have been asked to talk about.
Simon is very keen to that I talk about what services might look like after the review of the act, if we end up in a situation where there is little or no compulsory treatment and if we focus much more on peoples will and preference rather than what people, especially professionals consider to be our best interests; the balance between safety when distressed with retaining control of our lives and our human rights.
In many ways these are some of the fundamental issues we will need to be addressing in the review; what I will talk about just now will be my personal perspective. I will try to look at my vision of an ideal world and contrast it with my worries about what that world might look like if the review does not create resource, societal and cultural change alongside it. I will then have a look at some of the issues between those extremes and plead with you to help us see what they might look like in reality.
This talk is not the view of the review team, and as I said it is my perspective, but my perspective at the moment – I fully expect my views and understanding will change considerably over the next couple of years as I hear from people such as you and many others across Scotland and elsewhere.
Right first of all a bit of personal background, I have a diagnosis of schizophrenia about which I have mixed views, I have been detained in hospital on a number of occasions over the last thirty years and for the last ten years have been treated against my will on a compulsory community treatment order. My psychiatrist and MHO decided to apply for another two year extension two weeks ago. I am pretty sure that the treatment I get keeps me alive but I have mixed views on whether I should be alive, but more of that later.
In my work with HUG we consulted people across Scotland about their views on compulsory treatment a fair few years ago and in my work with the Mental Welfare Commission I did the same on detention and capacity and supported decision making and the balance between having autonomy and being looked after; culminating in three reports; some of which I think you can find on our website. I have spoken to the United Nations Committee against Torture on the subject of detention and have been a co- author of a paper on supported decision making for the International Journal of Psychiatry and the law.
I have also written about a year of my treatment in my book START which goes into quite some detail about my experiences and views on a number of issues.
So I have some personal knowledge and have learnt from many of my friends colleagues and acquaintances about their views on compulsory treatment. I have a great deal more to learn and over the next few years need to learn to keep as open a mind as I can on this subject despite having a considerable emotional investment in what this review might end up recommending.
So a world without sectioning, well let’s start to see if we can see an ideal. But first I will start with the negative; some of our current reality.
In my work with the Commission I meet people who have been through some of the worst experiences in their life and with services when sectioned.
There is no doubt at all that being sectioned is almost always traumatic; I still shudder when I hear hospital alarms go off when I am working and I go back to memories of being chased down the corridor of the hospital to the sound of those alarms, the thud of the shoes of nurses running after me, I still cringe at the expression on some of my friends faces who did not know I was in hospital and saw me being frogmarched back to the ward by a group of nurses; having been caught running away at the edge of the hospital.
But more I remember those weeks of constant observation, having the lights on 24 hours a day for seven weeks, craving a chance to be in darkness, not to have someone watching me all the time. I hate the fact that I am part of a club of people who know what it is like to wait for the nurse who gives you relative privacy when you are going to the toilet and not the one who stands with the door wide open, her hands on her hips; staring directly at you.
And nowadays, sometimes when it is time for my jag, or time to see my psychiatrist, neither of which I have a choice about, I often momentarily think of just getting in my car and going; leaving my family, my work and my friends but also psychiatry who for over a decade have determined large parts of my treatment and life.
I have often talked about an ideal world with my friends especially when I have been a patient. I remember long conversations about building an alternative hospital up the hill from New Craigs in Inverness which you could drop into when you were bored of your ward; a place with a garden, where we could cook meals together from the vegetables we have picked and learn about and experience things like, massage and peer support; tai chi, relaxation and mindfulness, where we could sit in comfortable warm, softly lit rooms and maybe talk, maybe sleep, where we could create art works and do writing and sit on benches staring out at the trees, the far off sea and the world.
We also talked about having a refuge on the west coast run by people like you and me, a self sustaining, place where we could walk in the hills and work in the fields, where we could stay for free if we had no money and work to the level we are capable of but avoid this affecting those of us that were on benefits. Cook meals; have our own rooms, cater for people who need a break from the world.
For many years I have talked with my partner about something that is not just for those of us with extreme experiences but for the whole community, that, just as villages have village halls and towns have leisure centres, we would have places to go to, to manage and improve our mental health, not dingy scrabbled together premises, always scraping together enough money to keep running but attractive welcoming places that you can go to. Places for anyone, if you just cannot spend another evening alone in your house, where you can go if you need to escape an argument with your partner, or just a place you can go with your baby when you feel like screaming because you are so exhausted and so much want a break, places where when you are down you can find company and when you are filled with thoughts that are rushing through your head you would be able to do something active or talk to someone or sip coffee, walk in circles. Places with the myriad bits to them that create a sense of belonging, and safety, a sense of welcome and acceptance.
Such things are wonderful visions as is the wonderful thought of a community that was connected, which cared, which reaches out to those that struggle, that values difference, that is supporting and is supported in turn.
When I think of services in the future I imagine we would have staff who enjoyed their work, who wanted to be with us and who we wanted to be with, we would have staff who can provide that atmosphere of both welcome and safety but also of kindness and warmth and cooperation and just sheer joy at being able to help fellow human beings. We wouldn’t have overworked, stressed out staff, we wouldn’t have under resourced services, people would want to work in the field of mental health and would know that they would be valued and thanked for doing so.
I have a fantasy that one day we will have a society where looking after our mental health and promoting our wellbeing is something we take for granted and which we have the support and knowledge to do, whatever our background or financial situation and the dream of a time where, if we are in distress, we can get services in the manner and place that we need them.
The reality at present is of course very different to this. This year I have met the family of a person who had begged to be sectioned but was turned away from hospital because they were not seen as ill and were seen to have capacity and who a few days later killed themselves in exactly the way they said they would. I have met a family member who for ages was raising concerns about the side effects of the lithium her family member was taking which appeared to be harming him until eventually that relative did die of the effects of that medication. I have met friends of a person who family members were desperately trying to get help for because when he stopped his medication he became very violent and who services did not respond to, who went on to murder someone, destroying both another person and his own life and I have spent a lot of time listening to the wife of someone who was homeless and suffering from huge distress but who services were either not willing or capable of helping.
Just yesterday I was reading Cassie Cava’s blog about talking treatments in England where she dissociated after treatment, fell down stairs injured herself and woke to hear her therapist saying to her you cannot stay her, you cannot stay here, over and over again, assuming her fall and collapse were deliberate and put on, an attempt to get attention the therapist did not think she should get.
And some of these things are so familiar to me, services so stretched, people so burnt out and helpless that the very people there to treat us see us as manipulative, make contracts with us about how often we can ask for help, tell relatives to call the police when they call services for help for us.
I hear of so many people who despite being desperate for support get turned away again and again and of course I hear of my friends who may get support but live in poverty, no longer have places to go to be with other people, to eat a meal together, share a conversation, people who long ago gave up the idea of work but would love to for once feel that they are valued by someone somewhere, to know that someone somewhere might like them, might want to give them a hug, go for a walk with them.
I paint a sad cynical picture, I know some of us experience poor and degrading treatment but I also know that many people when they get help and support get the most fantastic support; in my case my last four cpn’s have been wonderful people, completely committed to their work and the people they support, interested in us, helpful warm and friendly and so skilled.
I would like my personal treatment to be something that most people recognise as what anyone could expect, where not only am I treated with dignity and respect but the people do so with humour and laughter and warmth.
If we could change our society into a place where we trusted services, could get services, feel no shame when we say we were struggling with life then I think the need for compulsory treatment would decrease dramatically.
If we had hospital wards that were pleasant comfortable places to be where we could stay as long as we felt we needed and where there were things to do and people to speak to even if we lacked the motivation to reach out for the help on offer and if there were enough nurses and they did not leap to restraint but sought out our opinion, listened to us, found out about us, respected and valued us and those around us then I think we would use compulsion less and less and we would feel more and more trust in services, be more likely to join in and cooperate.
That is what I dream of and maybe one day it will be a reality and with that cultural shift our own response to our own distress will change. I would love to see a world where the thought of secure units is abhorrent, where we all understand why people get into the situation that can lead to compulsion but have done the work in society that stops that happening as often as it does now.
But despite yearning for this I have to give my own personal reality check.
I worry that if we end up with legislation that gives us more and more autonomy, which makes it harder and harder to section people but without a massive shift in culture and services and resources, than far from liberating us and giving us freedom I will witness friends dying, more and more people who are mentally ill ending up in prison and more and more people destitute and homeless.
I also worry that we can be too idealistic if we think that if only the right support were there, if only there was the compassion that so many people crave, the trust and the love then with that, the severity of distress that we experience would not occur and I am maybe cynical but I do not think that this is always the case.
It would make a great deal of difference of course but there are some realities to mental ill health that I would like to highlight, or at least they are realities from my perspective.
I believe there is such a thing as mental illness, that it is often caused by a combination of psychological, social and biological factors, that we do experience psychosis and extreme depression and fatal eating disorders and that this is not just a response to an uncaring society.
Let us look at just one thing: A delusion is by definition A false personal belief that is not subject to reason or contradictory evidence and is not explained by a person's usual cultural and religious concepts.
I worry about this, even in an ideal world with the very best of services it can be almost impossible to engage with the delusions that cause so many people to be sectioned, very possible to engage with the person but not necessarily the delusion.
I have witnessed this time and time again and will give a few examples but first of all we can start with me; for longer than I can remember I have believed that I am a devil, that I emanate evil and am part of the ending of the world. People around me do not understand how I believe this and sometimes I don’t understand either. I have had nurses take me through my notes time and time again and demonstrate to me the record that shows when I don’t take my medication, shortly afterwards I become obsessed with this evil, decide I need to die as a consequence and end up sectioned where I am put on medication again until I slowly rejoin the world.
I have had psychologists and psychiatrists and psychotherapists try to shift my thinking, I have had friends and family try to shift my thinking and to an extent they succeed. I am moderately intelligent; I know the symptoms of schizophrenia and find it hard to deny I have these symptoms but my heart; it just does not accept this. It says I need to be real; to face up to what I am and not to have any treatment.
I think everyone around me, myself included, agree that the consequence of that would be my likely death but still I think to myself well that is what should happen that I am truly selfish to live the wonderful life I do when I know what I am doing to those I love and the world around me; that I cannot allow these drugs to disguise this reality from me.
Let’s maybe think of more examples of things like this, people who have decided that they are being spied on by bugs planted in their brain by the Ministry of Defence, people who come to believe that the central person in their life is a clone and seeking to destroy them, people who think they can fly like angels from sixth floor windows, someone who thinks they have the solution to world peace and demands the television time to let the world know about it and will use force to get it, someone who thinks their neighbour is putting poison in their food, someone convinced that their thoughts are being warped and altered by aliens, someone who is sure that every person in the street knows what they are thinking and is laughing about them. You will know more than me about all this.
And of course some of these beliefs can reasonably be left as they are and often are, just hearing voices that are nasty to you is not a reason to insist on treatment, believing someone is giving you furniture that emanates poisonous fumes is not necessarily a reason to section someone.
But when, as in my case, I cannot be reasoned with and am determined to drain all my blood or set myself on fire then I can see why we might intervene; a new mother sure that she and her babies are evil and need to die, I can see why we may need to intervene. A person walking through town smashing shop windows because he is being instructed to by aliens, then we need to intervene and we need to intervene humanely and not go down the crime and punishment route of the justice system.
Whatever the causes of these experiences and whatever the treatments, these experiences do exist and do cause some of us to do destructive things to ourselves and others. I do not think we will ever live in such a trauma free, socially inclusive society where the challenges of biology and genetics have been overcome that means that you me and other people are not subject to these and other experiences which cause us to act in bizzare and maybe risky ways and at present I do not know that any one has found a way of interacting with us in these extreme states that is guaranteed to mean our delusions stop and our intent to do what we do disappears. I really hope one day we do, because if that were to happen then I can see how compulsion could stop completely.
Although I can see how we can do a great deal to support people to different courses of action sometimes I worry that if we left people to their own devises when subject to a condition that we define as not being amenable to argument or reason we condemn them to a life of torment and maybe death.
I would love to see new ways of engaging with the experience of psychosis, and am sure that building on such things as the hearing voices movement, early intervention in psychosis, open dialogue, the use of avatars and so on we may one day be able to enter and participate in what is still a unique and puzzling world to outsiders.
However, think of all these different models of service delivery and treatment, they are all about changing us, maybe not by crude force, but is it any better? Maybe in some future society we will go down the route the autistic community has gone and say we too are just neuro atypical, trying to change us is just wrong.
In most circumstances of course we should be able to lead our own lives how we wish and our own way of seeing the world should be respected and that may be strange and unique to us but it still needs respected.
However in my daily life I rarely meet people who genuinely claim the need or the right to inhabit and celebrate the world of mental illness and sadness. Most of the people I meet who go through mental illness see it is a terrible and haunting experience that damages them and their friends and family and when it reaches the extremes where people consider intervening against our wishes then I am not sure I have ever witnessed anyone at that time who could be seen as content and happy with the experiences they are going through, usually I see dazed and exhausted people, people living a life that I would hope one impossible day no one would have to go through ever again.
When I hear of people who, to any outside person hold the strangest most paranoid beliefs, who are psychotic and taking substances they shouldn’t and who have been abandoned by services and are now homeless and who do not believe there is anything wrong with them then I think we could make a difference by intervening and that saying we need to abide by their will and preference is maybe not helpful and it may be me that is old fashioned but some of our will and preferences are plain old ridiculous to anyone who witnesses them, are things most people would know we should do something about.
In the name of autonomy and freedom I do not want to see people I love very much put into the most hideous of torments.
I constantly see friends getting more and more ill and withdrawing from the world and society and friends and life and I constantly hear of people saying they need help and then services saying that they cannot do anything until they are sectionable and I hear peoples despair at that and when I think of that subject heading I was given, a life where compulsion does not occur or rarely then I would think this could mean we may leave such people to get iller and iller and iller and then I wonder at all this. Is that ethical or moral?
And yet I get the other side to this, even if most people I know think that in certain situations we need to intervene I hear over and over how devastating it is when the police break down your door, when you are taken to an alien frightening place and feel treated like a criminal yet have broken no law and as far as you know have nothing wrong with you want help with.
I also hear and know how awful it is to hear professionals say that they understand that we believe what we do but they do not personally accept this, that daily litany felt so alienating and so patronising when I heard it.
I have met people who say that we can make the most foolish decisions about our physical health care and that people do not intervene even when it will have drastic consequences and so why can’t we do the same when we are mentally ill? Yet I get stuck on the fact that it seems to me when we are ill or confused or distressed we often do not know what we want or what we think we want is sometimes driven by our distress or illness.
However good our services become, however compassionate and accommodating our society is, when there are times that we drive ourselves to the most awful actions and still we do not think we are ill. If we are convinced that we are being pursued and spied on and that unless we avoid the people who are doing so we will die, we will not go to our lovely crisis house or refuge, we will not seek out a service to help us with something we deny has anything to do with us. To me that is some of the sad and horrible reality of some mental illnesses.
But when there is that central part of our lives where the decision we make will result in our death and everyone is convinced if we were not ill we would not contemplate that course of action then I worry, I really worry.
This talk will alarm those of you that see the review of the act as an opportunity to escape the oppression and control of a system that to you is abusive and serves only to damage and harm your lives and so I suppose I want to make the point that personally I think it is a delicate balance we will be treading in the review and as a society about how we manage the right to health and life, with the right to freedom.
A massive topic and one which I think will occupy us as long as mental illness, dementia, learning disability and so on exist.
There has already been a landmark courtcase in England where as far as I remember a man was gravely ill physically and needed life saving treatment and was refusing it and on the face of it the reasons for his refusal were caused by his psychosis and how after much investigation, the court decided he had expressed a clear will and preference and could refuse treatment.
And so he was allowed to refuse his life saving operation and this is where it sounds really good, despite being seen as at deaths door he made a recovery; not only were his seemingly irrational wishes respected but his life improved.
I wonder how we would feel as a society if he hadn’t recovered? If instead he had died an agonising and slow death which is what would have been much more likely, because we did not over rule a decision that seemed clearly impaired.
I wonder if in my own case, if I was assessed by someone to see what my will and preference was regarding treatment, for ten long years I have said I want to stop my treatment, that sounds like a clearly stated will and preference and I think maybe it should be respected, but then again I have the most wonderful life, I have a quality of life few other people have the privilege of enjoying and I love it and I am terrified of that time that will come when I am sure I will be allowed to stop my treatment.
My friends and family think it is only with compulsory treatment that I have the life I do. And so I wonder if I were left free to not take my medication which is ultimately what I would do, how would we explain this to my partner and her young children, to my sister and brother, my son, my nephews and nieces; that although all the professionals agree that my judgement in one aspect of my life is grossly impaired that I should be free to act on it, to go the shore with my container of petrol and again attempt to become a spirit in the sky?
And yet not to have your will and preference respected, that is humiliating and degrading, how do we create a balance? Is there a degree of risk which we should accept before intervening?
Are there ways of meeting us and working with us that are closer to what we want than what other people have decided we should want?
I clearly have fairly well formed views of the dangers of going all the way down the route of always respecting will and preference and of stopping compulsory treatment completely.
Even with transformed services and a society that lives differently and thinks differently I personally think many of us would suffer unimaginably if we did not ever intervene but there is a need to see what could make a difference.
Maybe the fact that I would likely die in a world like that needs balanced with the incredible freedom other people would have when able to live free from control or force?
I will be very frank, I am even slightly worried about the fact that currently; significantly impaired judgement is a criteria for compulsory treatment. I have lost count of the number of people I have known personally who have died by suicide it sometimes seems through a basic lack of services or community but I could not even start to add up the number of times I have been told of people who have been turned away from services when suicidal and desperate, told that they have capacity and that ultimately such a decision rests with them.
I am so familiar with that state of mind; where life is impossible and you seek oblivion and both desperately want help and yet desperately cannot accept it and cannot comply or conform or do all the things you are meant to do even though apparently your judgement is clear, where taking a hot bath, going for a walk, playing soothing music seem like insultingly patronising responses to the state you are in, where you want protected but cannot admit you need protected, where you want to die but in the back of your mind say “Please stop me from dying.”
Impaired judgement and will and preference becomes very murky at such times but the deaths and despair of people I have known is indisputable; the need for more support and a different culture at such times, indisputable.
I started with a vision I and many of my friends have had for decades and I am sure if we really could have a society as I outlined and that it was more than that, it was about compassion and acceptance and equalities and inclusion then yes I think we would possibly reduce deaths as a result of distress or trauma or illness dramatically and greatly reduce the need to use force to make people take treatment against their will, my personal view is that, that ultimately is the path I would like us to tread.
But I worry that if we leave people who are psychotic, or severely depressed or chaotic as a result of the trauma they have been through to follow their own path without access to the services we all know are so desperately needed and without a society that has shifted to accept and understand difference or the needs of those of us who are seen as different, to follow their stated wishes in those extreme states that we would sow the seeds for the most terrible lives for people like me and you and my friends.
I have painted two extremes: a society with no compulsory treatment and a society not only with the services we need but the emotional literacy and sense of belonging and mutuality that means we all look out for each others well being.
From my rather cynical standpoint I am not convinced that the services we need and want will be transformed any time soon and neither can I see how our review would end up in a place where no one was ever treated against their will again but there is loads and loads that we can do within these extremes.
We can see if it is possible to have legislation that is not based on mental disorder, we can also have a look at how appropriate a fit people with a mental illness are to the social model of disability, maybe there are other, better models or combinations of models that should apply to us and be used when determining our treatment.
I have cast some doubt on supported decision making in some aspects of our lives but there is so much room to look at how we can be listened to, really listened to, how our preferences when well can be understood and how that can be managed when wellness and illness merge into each other and by doing this maybe when at our loneliest and most frightened we will be less lost; feel we have more control.
There is loads that can be done in the area of advocacy and in finding out how to harness the knowledge of those people that we know and trust have about our wishes and preferences and needs.
As I said at the start we are really very much at the beginning of this review there is so much to learn from, I am cautious, I loathe with a passion the daily suffering I see in the community I am a part of and want to change that
Equally I worry that our knowledge that compulsion and force are horrible things to do to our fellow human beings and can lead us to just call for a halt to it but fear that stopping the use of it without fundamental shifts in treatment, society, values and attitudes to mental wellbeing and illness, knowledge and resource provision would far from liberate my friends and companions it would serve to imprison them further, either in the legal system or the nightmare space they sometimes find in their minds
That caution I think is good; ideals are fantastic but we need the constant reality checks, the what would this mean in reality? What would this really mean?
And there is hope, this is a review which is bound to create some fundamental changes to legislation around mental ill health, learning disability, autism, dementia and so on and while I am cynical about how much our society will change in the near future I take heart that our First Minister has aligned herself with those of New Zealand and Iceland and said well being, the environment and so on are more important than profit and economic growth.
But alongside my caution is the need to hear from you and people like you and diverse communities and individuals across Scotland. The enthusiasm and optimism I hope some of you have for alternatives, the vision that you have that I may be lacking, is something I dearly wish to seek out and listen to as much as I possibly can over the coming months because without the people who really can see a brighter future we might not see much change at all.
Like the politicians who were dabating in parliament recently I truly think we are in the midst of a mental health crisis and very much hope that this review at least ends up with some influence and maybe some possibilities that would mean that we do not have young people waiting two years for services, people with severe illnesses living in twilight worlds where life is so empty it is almost like not living at all.
That is my hope, I do hope that some of my ideals align with some of yours and that some of my weariness and fear of what could go wrong does not put any of you off of contributing to the many discussions we need to have over the coming months.
Thank you
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