The value of relationships within statutory work from a lived experience perspective.
Adult Support and Protection Conference
SOCIAL WORK SCOTLAND
THE DOVECOT Edinburgh.
02 October 2019
Hello everyone – I am delighted to be here today and in a unique position where I can talk about myself to a large number of people, all of whom are expected to show some appearance of listening to what I say!
I love talking about myself and my life but there are limits to the number of times I can say the same thing to family and friends so I grab opportunities like this as if they were gold dust.
So despite the likelihood that I will appear nervous, thank you so much.
I am going to talk about the relationship I have with the professionals who provide care and support to me and in my talk I am going to cover those times when I have been given treatment against my will. I am hoping that my experience under the mental health act will, in itself, have some relevance to the adult support and protection act but will try to add a few examples where relationships within the context of the adult support and protection legislation might be of interest and perhaps of more relevance.
First of all an introduction to me. I work part time for the Mental Welfare Commission for Scotland as an engagement and participation officer (lived experience) and yes I know, it is a very laborious job title! Prior to that I worked for HUG action for mental health in the Highlands and before that with CAPS in Edinburgh.
I am in the luxurious position, where it is a requirement of my job to reflect on my personal experience when commenting on the work that we do in the Commission as well as that of my friends and colleagues and acquaintances; which is just what I will do today.
I have also had to the good fortune to have served on the Millan Committee whose review paved the way for the 2003 mental health act and the McManus review whose work led to current act. In the last couple of years I have been very much involved in looking at people’s views on compulsory treatment and supported decision making.
I personally do not think I actually have Schizophrenia but if any of you are interested in that subject do read my book called START which talks all about my life, or at least some aspects of my life and my treatment.
I have been treated for mental ill health for the last 35 years. I was first admitted to a psychiatric hospital when I was about 20. It was one of the old asylums and was on the outskirts of Sheffield. I hope to refer to some of the relationships that I had there later on.
Well, let’s get some of the basics out of the way.
I believe that I am possessed by a devil, that I am evil, sometimes I think I have been taken over completely by this devil and at other times I think there are elements of me left behind. I think I send out rays of evil to the people around me. That in a subtle way I take the wonder and love out of people’s lives. That, where once they felt certainty, they feel unease and where once they could offer joy, they question it; become caught in a negativity that consumes them.
More and more I think the high profile I sometimes have by speaking at international conferences and places like this; by having books and papers published is all a part of the ending of the world that I am helping bring about. That by speaking about how we sometimes need to take away freedom and by exposing my presence to so many people on platforms like this, we move a step closer to the ending of everything positive.
I am clever enough and aware enough to know that other people do not share this vision and can see how taking medication can mask from me the true horror of what I am. That it can maybe give me the wonderful, if selfish life, that I currently have. And I get that those terrible aspects of my life; that empty void, that place where I do not connect and do not feel and just do not have the spark that I see in other people may also be a part of an illness that I cannot acknowledge.
In fact, that part of my life is the part I hate most of all. I have the most wonderful new family around me, who give me love and joy; a vibrant and exciting life. And yet often I am lost from my partner (Wendy) and her children. I yearn to reach out with some sort of spontaneity, some sort of spark but it is like the cogs of my mind are so slow; so when Wendy says ‘Tell me something, anything’ I find no words in me and when the wee ones say ‘Play with us’ I would but do not have the vocabulary to reach inside me for a sense of anything we could do together.
I am also clever enough to know that if I have a fairly good grasp, intellectually, of the fact that I probably do have a mental illness and yet that my heart, my soul, my essence, thinks that I don’t; that this can produce challenges for people like you; charged with deciding whether I have impaired decision making or not.
I use terms like this slightly interchangeably: capacity, unable to safeguard, impaired decision making. I know they are all different in many ways but there are also, it seems to me, many similarities. I personally identify most with impaired decision making and struggle with that borderline between unable to safeguard and unwilling to safeguard. I think the line between the two is delicate, fluid and moveable but the consequences on people like me can be profound.
The people currently providing support and care to me have decided that I do have impaired decision making, that if I stop taking my medication, as I wish to, my life will be at risk. I agree it will be, except I think stopping medication will make me real and they think I will become ill.
Wendy gets tired of me saying, each time my compulsory community treatment order is reviewed, that this time they will realise I do not have schizophrenia and leave me free to live my life without their support and, though I live for the day I am not required to turn up for my fortnightly jag, do not have to see my CPN, MHO or psychiatrist and let them in my home if they wish. I also truly dread the day this does happen.
Despite living as I do and pretending I am not evil; I do love my life. I love the day to day things; taking Dash, the dog out for a walk along the shore with Wendy, getting anxious he will put his muddy paws on a strangers clean coat. Being silly with the children, doing the cooking and the washing, going to work, meeting friends, sitting on a log watching the clouds scudding across the sky. Seeing my sister, who now lives near me, phoning my brother or parents. Sitting down to write. Having a good long sleep when I do not wake up for the shipping forecast. Listening to the radio. All those odds and ends that make life delightful. I would lose all this without the support I get and yet I know one day I will have to properly face my reality and will indeed lose it all.
Well that was a very long and rather self indulgent introduction to who I am! I have a diagnosis of schizophrenia and of depression, anxiety and alcohol abuse. I have been on a CTO (That’s my community treatment order) for the last 9 years and have been in hospital a fair few times, when I have decided I need to die because of what I am.
The relationship I have with people like you? What is it about you and me that means that I can have this wonderful life? It is hugely complex and yet very, very, basic in some ways.
I yearn for connection; to be able to trust. I yearn to be seen positively. I want warmth and honesty and respect. I want to feel that, when people are in my life, that they really want to be; that I am more than a half hour section of someone’s diary. I want to be approached in a genuine and human manner despite the demands of diaries and deadlines and budgets and caseloads.
I think we all want this, maybe people like me more than most other people.
I have a locum psychiatrist. I sort of like him but hate the fact that he is a locum, that at my next appointment I may be seeing a brand new person; may have all my care and support changed, will have to tell my story yet again to this new person and worry at his or her reaction. Just as on my way home today, I will be wondering at how you have all taken my story and my perceptions and made judgements about me from what I have told you; just as I will be worrying that I have infected you with my evil, by being with you.
If life were simpler and if I was more confident maybe I would approach the people who help me in a different way; accept you as people giving me the help and support that is my due and my right. Play an easier, more rational and considered part in it but, to be honest, I think I am the most disgusting person that ever lived.
Because of this, when a new helper comes to my house, I am very, very, suspicious of them and though I may try to be friendly I am also frightened and nervous. I do not know why. I did not have that litany of childhood events that sometimes makes it hard to trust other people. My contact with professionals has generally been very positive, so I do not have the bitter reality of poor treatment to overcome and in some ways I am glad to relinquish power; to rely on people like you to keep me alive as I know what a poor job I would do of that alone.
In a very simple way I am that cliche of Julia Roberts and Hugh Grant, I am just a man standing on front of you wanting to be loved!
I think a lot of us, who lack confidence, who have experienced isolation and loneliness, want at least the impression of something loving and compassionate or empathetic more than anything else, when they see people like you.
Personally, I do have a great need for love and for respect and for kindness. I do not think there is a single part of me that merits that and so, before I even meet you, I counter my fears with other anxieties. I assume that you will look down on me, will see me as needy, will be bored by a story you have heard in different versions a hundred times before. I worry that, when you walk the steps to my house, you will be looking forward to the end of the day; trying to work out how to paste a pleasant smile on your face for the next wee while when really the last thing you want to do is be in my company. I worry you will see me as a fraud, as a burden; as someone to be avoided if ever you see me in your private life, when walking round the same shopping centre as me.
And of course there will often be times that you need that professional mask, that distance. It is too hard to be open to the pain, the need, the wish for impossible solutions that people like me have. I know you can’t do that constantly without exhausting yourself but at the same time people like me cannot meet new people like you with trust and openness and a willingness to share those terribly intimate and personal aspects of ourselves that sometimes needs done, for us to get help and you to make assessments.
It is a terrible balancing act. For me, I often need time and care and that talk of all those things that make us human rather than talk of illness and despair. I need to talk of what the children are up to and how your children, in turn, find school or bed time or whatever. I need the chance for you to get to know me and for me to get to know you, if I am to trust you and have faith in you.
Going on a tangent; in the Commission we have done some work on supported decision making by which I mean people like me either being able to take any decision we may wish to or being supported to make decisions about our life, care and treatment instead of having other people impose such things on us. One of the key things that people have told us they need in order to be supported to make decisions is to be in contact with a person who knows them well and who they trust. This can be a friend or family member but it can also be a professional and this is where my mention of the importance of basic things in the relationship people like me have with people like you comes into being. If you are trying to assess our decision making ability, whether it is impaired or not, whether we have capacity or our ability to safeguard ourselves then of course reference to things like advance statements is important and named persons and people with power of attorney but in many ways it is what you have with us personally that is so important. When we are no longer coherent or when life is just generally that bit more confusing, then if you have had the chance to get to know us and to value us and to establish trust with us then you have many of the ingredients we need to make decisions with you and for ourselves.
If I am terribly sad or not sleeping well or just being me then I am maybe more likely to consider certain actions or activities that you might suggest if I trust you. Likewise if I trust you, I am more likely to confide in you; to tell you the things that are not part of the story this talk is, but are somehow fundamental to who I am and you, in turn, will be able to make better and clearer assessment of my decision making ability.
If you know my friends and relatives and have also managed to gain their trust then they in turn can let you know when things have gone a bit skew wiff need more intervention from you. You can also get a much clearer idea from them of what I want out of my life and how I like to be treated.
If you know me you, will have a much clearer idea of what my needs and wishes are and, when care is being planned for me can, as far as is possible, base it around those wishes, rather than what you or other people may think they should be.
If you know me well and have done the work that demonstrates that you have a basic respect for me. Maybe not love but something that shows you can connect with me, then you will know how I want to be approached and what my values and beliefs are and at the same time know that the warmth and humanity I crave may be the opposite for someone else; who may prefer the distance, the need for a business like and professional approach, where emotions do not get tangled in the support they receive.
Some people I know, value their autonomy and independence more than almost anything else. They would see my treatment under a CTO as the ultimate indignity while I, in contrast, see the CTO in some ways as a mechanism which, by taking over some key decisions that I lack the ability to make, allows me to take almost every other decision I would want to make: to look after the children to, drive the car, to enter into contracts for the publishing of my book, to sell my house and the every day basics of buying food, working, travelling and so on.
Equally, if you know me, you will know some of my views on suicide and that dodgy ground where we want to end our lives but are seen as having capacity. I know some people think the right to die is almost an inalienable right but I know more people who say and believe that they need support at such times. That, although they know the consequences of taking an overdose and have, if you like, reasonable reasons for it, that, in their mind; decision making ability is always impaired when your emotional landscape impels you towards death and that intervention and support is always needed.
Knowing such things and our personal perspective on this is important and may help influence how you respond to us individually.
Knowing our situation is also important. Following the break up of my marriage and the estrangement I had from my son; I entered the most awful of places; consumed by guilt and bombarded with incredibly difficult phone calls.
All I wanted to do was have an end to the fall out of my marriage and a way of making amends for the damage I had caused by walking out on my family.
When it came to settling my separation and buying my new home; my named person ,who was a close friend, charged with speaking in my best interests when I can no longer make decisions was very worried. She was appalled at what was happening and wanted to find some way of stopping me making some of the decisions I was making. She felt that fear and anxiety and just that welter of sadness was making my ability suspect.
She turned to my mental health team but they said I clearly had capacity to make decisions and they were right but how I would have welcomed it if someone else had intervened and stopped me from doing what I was doing. If that had happened I would have left my marriage not with £36000 pounds but I think, closer to £136000 pounds
It intrigues me these times when we are making decisions that everyone around us knows we will regret. I can so clearly see the need we have to make mistakes and to lead our lives as we would wish and know that I would be exceptionally angry if someone intervened in some paternalistic controlling way. For instance by deciding if my relationship with Wendy and her children was good for me and whether I could be in it, and yet I can see how that can be something that is sometimes needed.
I have a good friend who in her need for love and affection and cuddles when she was alone and desperate entered into a relationship with a person of very, very poor character who was threat to her children. I can see how she needed kept from that relationship, and I can understand her determination to die when her children were taken from her as a result and how she fought the people who came to her door when the children were taken from her but I can also see that maybe, if she had had support in a different way at that time; that might not need to have happened.
All of you will have had times I imagine when the decisions you take are not remotely the ones you should take. Returning to the pain of separation, I have lost count of the number of couples who collapse when separating; end up sleepless, depressed, drunk, anxious and in that quagmire come to believe that their ex-partner was always abusive and controlling in just in the same way that very same ex-partner is speaking of them too and how that can lead to calls to the police; to all sorts of advice and protection agencies when what is happening is really the worst of all pains and betrayals but not necessarily abuse. And that, if people are behaving badly they will not do for ever, are not irredeemable. That the hated husband or wife still treasures and loves their children while being vile to their partner. Yet somewhere in this, we all know the sometimes their decision making ability and their ability to safeguard themselves has collapsed and fallen to pieces.
You will all have so much better an understanding of things like this. The fact that at times of crisis; our insight, our ability, our mental health goes out the window. That how we would like to act is not how we do act and that sometimes at such times we really are a threat to our children despite loving them and a source of danger to our ex partners despite them once being the people who brought love into our lives and how you balance that I do not know. How you sort through all that and decide if someone is mentally ill and at risk of harm and needing protected or something other than that.
I wish I knew the answers to that. Luckily, I don’t have to do such things in my working life. I can just reflect a bit; ponder at how complex people’s jobs can be.
Over three decades ago when I came out of that old asylum I mentioned. I had a cheque for a thousand pounds in my pocket that I had just inherited. A fellow patient knew that I had that money and knew that I was incredibly lonely. Despite having learning disabilities and addiction problems as well as a mental illness; he was very capable indeed of helping me spend nearly all of that inheritance on drink and food for him. In fact he said to me later, that the reason he had tried to remain in my life on discharge from hospital was because he wanted some of that money. Would I have welcomed intervention to safeguard me?
No I wouldn’t; he became a good if strange friend, gave me some sense of self worth and value by apparently allowing me to help him.
And to finish with something that is very thorny indeed. On my first admission to hospital all those years ago, the nurses would take us to the pub for a drink in the evenings. Some of the staff in the hospital were horrendous and, shouting your worries to the doctor in front of all the other patients in some sort of strange free for all ward round, left a lot to be desired.
But I got to know some of the nurses well and one, my key nurse, I got to know very well. I met up with her a couple of days after I left hospital but had not been discharged from care. She became my first ever girlfriend and I wonder at that. I know some people who, in retrospect, would have said that was awful; especially if I had been a woman and she a man, instead of the other way round.
But for me it was wonderful. To find, at a time in my life when I had nothing to believe in and no confidence; someone who delighted in my company, made me laugh, desired me. That pretty much transformed my life; gave me something to look forward to and live for.
I do know that such things should not happen but what I think I am saying is even when we are seen as very vulnerable and when that vulnerability and our illness and our decision making ability seems questionable, seems to be leading us down very unhealthy routes it is always complicated. I think I am a master of not giving answers I’m afraid!
I think being sectioned has saved my life and gives me a wonderful life where I have much more agency and control than if I were left to my own devises; actually if left to my own devises I would probably be dead which I still think might not be a bad thing but which would of course mean that I would have no agency, no legal capacity at all.
If someone could have intervened when I was leaving my ex-wife, I would have been delighted. I would now be paying off a tiny mortgage and would find it easier living on a relatively small wage and have less to worry about when I think of caring for and loving my new family and of course, an equal division of our assets would just have been the right thing to do.
But if I had been stopped, all those years ago, from finding a girlfriend in my key nurse or a friend in the person who knew he could get hold of my money – I don’t know – I think I am glad that both those things happened.
Well I have spoken for ages. If any of you want to see any of the views of people with lived experience views on supported decision making that I have spoken to in my work with at the Commission then do go onto our website to see the reports on it.
A last few words. I am pretty sure that what I ask for, is an impossible dream. It is hard to get on with everyone, to communicate well with everyone you meet, to build a connection and even harder to do so when we may be suspicious of you; when we live lives that are always on the verge of collapse. Even harder when you are having to prioritise your casework, need to fulfil statutory obligations but if it is possible the touch of humanity in the despair some of us feel, can make a huge difference.
The help I have been given by a number of mental health workers has, over the years kept me alive, allowed me to recover from some of the worst of times, helped me to believe that other people can like and love me.
Sometimes it is just the tiniest touch of tenderness that makes a profound difference while the opposite; the dismissal, the blunt voice, the alienation by seeing us as other. That is also remembered and if it happens too often, takes away the remaining trust we have in our fellow citizens.
I know it is patronising but, do, as far as you can manage, try to go down the compassionate, loving, human route. It can make a huge difference.
Thanks so much for listening.
See https://www.mwcscot.org.uk/ for information about the Mental Welfare Commission.
(Photo: Trees in Levengrove Park 11 2020)
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