The perspective of people with lived experience 2017
Napier university
Craiglockheart campus Edinburgh
Graham Morgan
Mental Welfare Commission for Scotland
Hello my name is Graham Morgan, I am an engagement and participation officer with lived experience at the Commission
I am going to spend the next fifteen minutes talking through some of the main themes that came through a consultation I carried out alongside my Colleague Kathleen on Capacity and Supported Decision making.
Over the autumn and winter of 2016 and early 2017 we met with people with lived experience and their friends and families across Scotland to discuss this subject, usually with people who are members of advocacy groups but also with people who are clients of a particular service.
I met almost 260 people and Kathleen probably at least another 100 people.
The reports that Kathleen and I wrote on this are due to be made public in the near future, I do hope that you will take the time to read the whole reports if they interest you but I suppose the headline issues are:
We found key themes such as;
The majority of people with a mental illness think that in some circumstances detention is necessary, about 80% or more of the people we met
The vast majority of people think that people with a mental illness can and do lose capacity or have impaired judgement
A minority of people believe that detention is a gross abuse of human rights and should be stopped completely
Within this some people feel that;
detention can be traumatic and may put treatment and recovery back some distance
detention means that people miss out on a raft of opportunities that could lead to them having a more fulfilling life
detention can be seen as an exercise of power and a rejection of different ways of living in and seeing the world.
Other interesting points which were raised by some people included the following;
impaired judgement extends far beyond the intellectual understanding of illness and its effects on reasoning
detention should be used for people who are actively suicidal even if they do have capacity
that the very environment we are treated in leads to impaired decision making
that there are a range of ways of having support to make decisions about care and treatment and a range of people who could assist with this and therefore avoid some of the negative consequences of detention
Detention enables people to give responsibility for their treatment away when they are ill, to other people rather than have to lead autonomous and self determining lives
I will concentrate on just a few of these themes
First of all that blanket statement about capacity or, in the context of mental illness; impaired judgement.
I think I would do best to illustrate some of this with the voice of people who participated in these discussions
I was thinking I was making sensible logical decisions but I was way from rational decision making. Looking back it was horrific what I was thinking
Deep depression is an overwhelming sadness that makes you incapable of contemplating your future; you cannot think ahead. You stop cleaning yourself, you can’t comprehend what you need to do next; your body is that tired you can’t do anything
When I get in that position I can’t make decisions – I can’t shut the door or put the kettle on – I just sit
When I am in a medical state, in a clinical state of mania, psychosis or depression – it is at those times I don’t have capacity – at these times I cannot do anything I am hell bent on destroying myself – at these times I cannot make any decisions
These should, I hope, be self evident examples of situations where people struggle to or indeed cannot make decisions. However people also feel that everyday activity can also be influenced by a person’s mental illness and emotional state even when it does not warrant compulsory intervention. For some people this is clearly a situation where allowance or adjustment needs to be made, while for others it is an example of how difficult it is to measure when someone’s ability is significantly impaired rather than slightly impaired and therefore an illustration of how dangerous it is to intervene against peoples will on that basis.
Some people do not view mental illness in ways that correspond to a medical model of thinking and would question concepts of capacity or impaired judgement: for some people the experience of hearing voices is a valid and culturally acceptable way of living and to try to change this is an attack on a community, for other people, what is seen as psychosis is instead, the liberation and insight of a spiritual awakening. For such people and such communities, seeing these experiences in terms of impairment and illness and as evidence of impaired decision making can be deeply offensive.
In contrast some people argue that our ability to make decisions is not just illustrated by someone like myself. I believe I am a devil and emanate evil wherever I go, I think my diagnosis is a mistake and that I do not have an illness and at times I try to kill himself because of this. This is despite the arguments of my friends and relatives and helpers; at such times I am said to have impaired decision making.
However some people would say that people may take actions that they are very well aware of but are simply unable to stop doing and that their decision making is impaired as a consequence. So someone who has experienced prolonged childhood abuse may be mainly aware of what they are doing but may have such a negative views of themselves that they are very likely to die by their own hand. They may be desperate not only for help but also for friendship, for love, for purpose and meaning and validation and yet all their actions are designed to reject help when they take overdoses, prove how horrible they are when people become their friends, smash up their rooms when people are too nice to them.
They would love all the positives in their lives but they have almost been pre-wired by trauma not to get that. Some of them argue that they too have impaired decision making in a comparable sense to those who are psychotic and that far from being told to exercise their skills or act responsibly that they need support and safety and asylum and sometimes intervention when they are unable to ask for it.
When we come to look at how to decide whether people have impaired decision making there was a broad consensus that we need both medical input and the input of those that love us and know us.
Some of us doubt the ability of medics to assess our decision making ability; we feel that if a person has little knowledge of us, comes from a very different background and is seeing us in an environment that is so alien to us that any decision we make will inevitable be impaired as everything we do and see is bewildering and beyond our everyday understanding of the world, then we cannot really be confident of their ability to assess our ability to made decisions.
And yet medics do have a detailed knowledge of mental illness and how it affects people and are relatively divorced from the emotion of the situation.
In contrast our friends and relatives may have known us for all our lives and know us inside out, they may be well aware of our opinions beliefs and ways of acting, our lifestyles and our fears and influences. They can be the ideal people to comment on our ability to make decisions and whether that has changed and the ideal people to know if we might need support or intervention at certain times in our lives.
On the other hand our friends and relatives may be as traumatised as us by the situation we are in, may have little knowledge of mental illness or services, may not always have our best interests at heart often because they are so close to the situation and for that reason may be less reliable when assessing decision making ability than we might think.
It is for this reason that most people feel that if our decision making ability is being assessed that we need a combination of professional and carer input.
When we come to detention itself I will again let the voice of people with lived experience and their friends and relatives speak for itself
A friend of mine was sectioned and it was the best thing that happened for her. It saved her life; her mind had gone completely; she was very unwell. She had asked for help but had had to wait; if she had got help earlier she might not have been sectioned
If someone is likely to harm themselves or others you need to section them but they must be ill.
When I am depressed I have impaired judgement – sectioning can be good, it forces you into treatment and helps you come to rational thought
Last time I was about to take on about 6 police officers, I wanted to kill them. It was a good idea to stop me.
However not everyone agrees with this:
Some people say that such is the negative impact of detention that it becomes impossible to treat people effectively, in other words if they are not willing participants then treatment is meaningless.
Other people say that the treatment itself makes it harder for people to participate or recover saying that some medication is so unpleasant that it damages them more than if they dealt with the illness alone.
Some people believe that using mental illness as a criteria for intervention is in itself discriminatory and ask why it does not apply to people with other conditions such as addiction.
Then there are people who feel both that depriving people of their liberty should only be done after a court appearance and that it should only be as a result of carrying out a crime.
Lastly some people feel that people who do commit a crime as a result of illness (and some of those people do question the validity of mental illness as a reality itself) feel that they should instead of going to hospital go to prison.
These views are in a distinct minority but were expressed at a number of group meetings and with great passion.
When we are at our most distressed and do plainly struggle to make sense of the world around us we, can suffer hugely, when detained and taken to hospital.
For some people in contrast, it is a positive experience and for others it is positive in retrospect, but for some the assumptions of power, the taking control and the imposition of authority can be terrifying. If we have been taken to hospital by the police we may wonder if we are actually in prison and whether we are being punished.
When the staff in hospital are remote and the ward clinical and cold then it may be very difficult for us to feel at ease or participate. Indeed for some people it is less what people do to them than the underlying attitudes that staff appear to hold about them that is the most upsetting.
It is possibly partly because of this that for some people the idea of supported decision making can feel confusing – if people have considerable power over us and insist on us being in an environment where we feel we have little say or control how can we then shift to the concept that we could play a key role in what happens to us and how it happens to us when we can still be treated against our will? It is almost a leap of reality that does not compute.
By the same token some of us say that there are times in our lives when we cannot make any decisions at all and for these reasons giving us control over what happens to us at these times is equally confusing and equally impossible. It is in this context that some people also ask how we are able to instruct legal representation when we seem to be acutely ill too.
However other people have an additional perspective and are at pains to say that our ability to make decisions is usually only impaired in some areas of our lives when we are seen as ill and that in many other areas of our lives we are fully capable of making decisions and that this should be respected.
So, for instance, we may want to destroy all the mobile phones around us because they are spying on us on behalf of the government but are perfectly capable or deciding who should visit us or what food we want to eat or how best we would like to get exercise. Equally we may be able to make clear decisions about some forms of treatment, especially if it is treatment not directly connected with our illness, and in the case of mental illness some people would argue that although they may not have great insight to their illness when ill that they have consistently demonstrated a reasoned and valid objection to being given medication which they feel should be respected.
One of the key issues people talked about was that transition from having decisions taken about almost everything when we are very ill to the point at which we become increasingly able to take back day to day decisions and ultimately control of our lives and our independence as we get better.
So when we talk about having support to take decisions because our ability to make them is impaired we also need to be aware that we may need support with some decisions but no assistance whatsoever over others, we may instead need people to demonstrate to others, that we can indeed make decisions for ourselves in some areas of our lives and that the main task is for those people to respect those decisions.
Some of the classic ways of having support to make decisions when our ability is impaired is through the use of advance statements, personal statements, powers of attorney and through the support of named persons who might help us in this area. And through planning and decision making tools such as wrap plans and Paths and self management and awareness programs that may help us to connect to the path we would like to take or through methods of treatment such as open dialogue.
Despite this we may need outside help to come to decisions, even in those areas where we may not have impaired decision making ability but where we may have lost motivation and the confidence to take decisions or to speak out or to be heard.
Almost everyone we spoke to said the people who may help us in this should be people that we trust and that the most likely people this could be would be people that we already know and who have some considerable knowledge of us .
We felt that friends and family were often the first people we would turn to in this situation and although there can be many problems with placing our confidence in people who are so emotionally bound to us there are also many advantages.
We would also turn to advocates and peers and people who are independent – for some of us however, the people we most trust are the professionals who already support us – despite worries of power, control and influence that some people would have about this, it is to them that some of us would turn which is almost the ideal point to stop this talk.
It is very easy to talk of discrimination and power and oppression and abuse and this can and does happen but for many people the nurses doctors social workers and support workers who assist us are the people we would turn to time and time again which was the final point people made – freedom and autonomy are very important but so is access to services, so is help in crisis, so is a hospital bed or a community arts and mental health project and while the UNCRPD general statement on compulsory treatment may exercise the thoughts of many, many, people; Access to friends, benefits, purpose, support and care and things to do; all those other things that also make life liveable tends to be a more common concern for the people I meet when I wander around meeting people with lived experience. And of course if we can deal with those things first then it makes it less likely for us to become so ill and therefore by acting preventively we are more likely to avoid all the trauma and issues that come with detention and the mental health act.
It was great meeting and talking with so many people discussing so many rights based issues – but the issues of rights and autonomy and so many other things encompasses so much more than just impaired decision making and freedom though for some it is that which leads to their recovery and for others, that which ruins their lives .
Thank you – I hope to meet many more communities to discuss these issues and hope to have many more conversations that move on and get into the subject of supported decision making in more detail in the future.
For more information on the Mental Welfare Commission visit : https://www.mwcscot.org.uk/
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