MENTAL HEALTH OFFICERS – ARGYLL – ARROCHAR- 2018
The role of engagement workers at the Mental Welfare Commission and some of the views that people with lived experience have on some topical issues.
Hello everyone
Thank you so much for inviting me along today – I am going to talk for about half an hour so I fear I may lose your good will somewhere along the way, but I hope that scraps of what you hear are interesting to you and may help you find out more about my work and the views of people with lived experience on issues that are important to them.
I know I shouldn’t read out a talk in a small group but I am going to anyway, it makes it easier and means I get to say what I want to say instead of hoping I remember each thing I want to say.
I am going to talk about my role in the Mental Welfare Commission and briefly go through to findings of the latest consultations I have carried out with people with lived experience.
First of all my name is Graham Morgan, I work for the Mental Welfare Commission as an engagement and participation officer. A condition of my post is that I have personal experience of mental illness – I have had a diagnosis of paranoid schizophrenia for the last 27 years and have been compulsorily treated under a community treatment order for the last ten years.
I have worked for most of my life with groups of people trying to improve the way people with a mental illness or mental health problem are treated. I started off when I was about twenty in Sheffield in England as a confused and anxious young man just recently released from one of the old mental hospitals where I helped create a centre for young people with a mental illness run by young people – I remember that McMurphys, as it came to be called, incorporated furniture and wood liberated from the very asylum I had been released from when it finally closed.
I then moved from England to Scotland where I worked for many years in mental health advocacy organisations near Edinburgh and for 20 years in the Scottish Highlands.
All of our work was and is based on the voice and experience of our members – it is their participation and experience that we are all about - we were people with a mental illness speaking out on behalf of people with a mental illness trying to create social justice for our own community.
It was a lovely job and for twenty years I was the manager of HUG before resigning and moving south to be with my partner Wendy and her twins in Cardross. Now I work for the Mental Welfare Commission for Scotland part time as an engagement and participation officer (lived experience) alongside my colleague Kathleen who has lived experience as a carer. And it is a lovely job and an exciting and challenging area of work that we work in.
I find it strange to be a part of this organisation: when I first encountered it many, many years ago as part of a small advocacy group I found it extremely formal, intimidating almost, a place of dark suits and solemn expressions, not a place that I wanted to spend any time in, almost a place that I feared.
But life has changed dramatically in the Country, in the Commission and in mental health since those days, my job is all about involving people with lived experience of Mental Disorder in the work of the Commission and Kathleen my colleagues job is to involve people with lived experience as Carers.
It is obvious why we want to involve people in the Commission; why wouldn’t we include people in their care and in the organisations that help them? It is after all their lives that are being affected by treatment. We need involved both morally in the sense of the old saying of “nothing about us without us” but also in the purely practical sense that although there are professionals with huge expertise about what does and doesn’t help us, we too have incredible expertise and knowledge that is a rich and valuable source of intelligence.
Just take myself as a brief example – My first experience of mental health care occurred when the old asylums of England were one of the main sources of treatment, when community services were in their infancy and that really was quite a bleak time, but it has extended to the present day where I live a vibrant and joyful life with my family and friends albeit with restrictions and treatment but a life that I would not have had if we were still providing mental health services in the way we were 35 years ago. I am lucky, many of my friends and acquaintances are not so lucky but also have valid and important experiences and reflections on those experiences.
And of course the Mental Welfare Commission who I now work for has also changed, it is still a place where it is common to see people in suits and it is still a place that has a dignified air to it, the sort of organisation that would not rush to public pronouncements unless it were very sure of its ground but equally part of the structure of the Commission means that by law it has to have people with lived experience involved in it and part of its culture is such that we now have an entire, if small department, devoted to involving people with lived experience in its work.
I know what it is like to be in hospital, I know how much you can yearn for the fresh air, I know how sterile and clinical and intimidating it can be and equally how terribly boring and sometimes frightening a stay can be. I also know enough about some other parts of the world to know that we are pretty lucky with what we get here. In the Commission we visit every psychiatric ward in Scotland regularly. Kathleen and I are on the teams that go on some of these visits and just like everyone else we have access to all parts of the ward, to patients notes, to staff and to any patient or carer who wants to speak to us and while the other members of the team may have an expertise in how care should be provided from their perspective as social workers and nurses and doctors we have an expertise that often immediately connects us with patients and carers. Frequently on visits, I meet fellow patients who are amazed that we are part of the team and who almost visibly relax when they are with us with that feeling of knowing that we will almost certainly know just what it is like to be in such places or to have a loved one in hospital with all the emotion and anxiety that can come with knowing that someone you care for with all your heart is in such a terrible state.
We are also a full member of the team on our themed visits although we have an additional role where we meet people with lived experience and family and friends prior to a visit – we meet them in this way because we want to find out first hand beforehand what issues are priorities for people experiencing what we are trying to find out about. In that way we can structure our visit around what people actually think is important, rather than what we think is important. So when we carried out a visit around homelessness and mental health we met homeless people to start with to find out what was important to them, when we did a visit on the experiences of people with a diagnosis of Borderline Personality Disorder we met people first of all to find out what priorities they had for what we should be looking at later on in the formal visit
On the actual visit we carry out interviews and focus groups in the same way as the rest of the team, write up the results and are increasingly involved in helping write the final reports and in contributing to the overall project from beginning to the final publication of the report.
When looking at good practice guides and policy issues we have established a network of groups and individuals who we consult and involve in all aspects of the work, so with our Rights in Mind guide, we were a part of the project team, we gathered rights issues from people with lived experience, we helped organise a nationwide consultation exercise on the subject with people with lived experience, we commented on the draft documents and recruited service users to be filmed on accompanying dvds about rights and then recruited people with lived experience to speak publicly about the publication and have been publicising and passing out the reports ever since in talks about rights with user groups, social workers , students, equalities committees and so on.
And it is this; basing our work on what people tell us is important, making sure that when write our report although we comment on the obvious things like our right to advocacy and appeal when we are detained we also comment on the small humiliations like when our possessions are searched on admission to hospital that makes sure that we base our work on peoples real lives.
We do similar with policy issues such as around welfare benefits where we have provided briefings for our government and given talks to the fledgling workforce of the Scottish department of social security and to do that we tap into the thriving independent advocacy network of people speaking up about mental illness in different parts of the country as they are an ideal way of contacting engaged and energised people with personal experiences and things to say.
Equally we have worked with people with lived experience on advance statements and are now about to work on care planning from a lived experience perspective.
To be detained because you have a mental illness is almost always traumatic, I will never forget being chased down the corridors of a hospital with all the alarms blaring because I had run from the ward. Our freedom, our dignity, our right to life and health are complex and hugely emotive issues –over the last two and half years we have been involving service users across Scotland in discussions about detention, about capacity, about supported decision making and have produced a number of reports on this.
We encourage the wide range of views that people have, we try to gain agreement from the groups we consult when we finalise the reports. And it has resulted in us giving talks on detention at the United Nations, at the 2018 Transnational Human Rights Law summit and at the English review of the mental health act and at other forums. We will also have a paper on this published in the International journal of law and psychiatry at the end of the year.
All these descriptions are ways of involving people with lived experience in the actual work the Commission does; making sure that when it creates reports, makes statements, carries out visits, produces guides and videos that it has consulted with and involved people with lived experience.
However there are other forms of involvement – if we , as people with a mental health problem are to feel a sense of belonging or indeed ownership of the Commission we need to know that it works in ways that respect the lives and wishes of people with a mental disorder.
To do this we have an advisory group that includes people with lived experience and their loved ones and where we can, we provide support to them if they wish this. Our board includes directors with lived experience and our business plans are informed by engagement events where we gather the opinions of people from across Scotland in an event to look at our priorities. Equally, we are constantly seeking feedback from groups about the work of the commission and what people want it to do.
This is not always the most pleasant task, I find it strange when a nurse addresses me as sir but even stranger when a patient does too. I find it upsetting that people still feel that they have to dress up if they are to meet someone from the Commission and feel a sense of empathy with advocacy groups when they feel disgruntled, say that treatment has so far to go to be remotely of the quality we would be proud of, say “Why isn’t the Commission making this happen? Why isn’t it so much more powerful and visible?” so much more effective in creating change.
And Kathleen and I are part of this – we are here to help stimulate the cultural change that means that one day people with lived experience will look on the Commission with a sense of recognition and an appreciation of what it has done because it has reached a point where it can demonstrate that it involves people at all levels and in all aspects of its work and that this is not tokenistic but an integral part of its working methods.
Lastly and this is by far the most privileged part of our work. Kathleen and I are here to just be ourselves – to use our personal experience, whether that is as a carer of three sons with a mental illness and sister with a learning disability in Kathleen’s case or in mine of having what people call a mental illness.
We are meant to reflect, our talks are meant to reflect our personal opinions as well as those of others. When we are nattering to our fellow workers over coffee our presence, our visible reality is all part of informing changing and making the inclusion of and involvement of people with lived experience a vital and natural part of the Commission.
There is something wonderful about that freedom, in the past I have always had to temper my voice with that of my friends and colleagues, ensure that what I do is in some way representative but here I am expected to think how things would affect me personally: what would sitting in a ward with nothing to do be like? How would I like to share a dormitory when I am very distressed and those around me are? What do I actually think about rights? How did I find my last tribunal? Why do I really write an advance statement? and more practically how welcome do I feel in the Commission?
How much does the Commission really base its work on that of people with lived experience? How accessible are our reports and materials to people with lived experience?
And what do I need to do so that the people I would prefer to go to the pub with or drink coffee with rather than interview or involve or empower do not any longer worry that they will have to go out and by new clothes if they are to have a one to one meeting with something as important as the Commission. Will instead say “Of course you should go there, they get it, they understand, they are on our side.”
Well that is my role at the Commission dealt with – that talk was an adapted version of one that I gave at the annual international social work meeting in Dublin a few months ago.
Now to talk about some of the more recent reports I have written as an engagement worker and hopefully when I have finished we can have a discussion about what I have said.
You will all know that, some years ago, the United Nations Committee for the Rights of Disabled People issued a general comment saying that compulsory treatment of people with a mental disorder should come to an end. They based this to a large extent on the fact that it is against people’s human rights to discriminate on the grounds of a person’s disability and that legislation across the world that allows for compulsory treatment is currently based on disability as a criteria for intervention. What they said is that people instead should be able to make decisions with support ,should be granted legal capacity in all that they do.
I am not going to get into my personal opinions on the possible consequences of this or even how 100% support would differ from compulsory treatment but I will reflect on a piece of work we completed recently where we talked about how supported decision making might look at those times when we are about to be sectioned.
In some ways what people told us boils down to relationships and how we work together, I think there is no better point to look at how we might treat each other than at that point when we are at our most distressed, most desperate, when our lives are at risk and our freedom likely to be curtailed.
We spoke to many people who had lost their freedom as well as others and although there was often some bitterness at how they had been treated, the great majority of people thought that compulsory intervention was sometimes needed, people worried that without compulsory intervention, people would die, be made homeless and so on. A number of people remarked on the fact that at such awful times they really do not have the capacity to make decisions, their judgement their thoughts and reality is clouded and obscured and there is a need for someone to take over.
But there are limits to this, it doesn’t justify feeling lonely or frightened or dismissed as a consequence.
I remember showing the report to my partner and hearing her reaction that she did not read it thoroughly because it was so obvious what was said in it.
It is strange to reflect that common sense sometimes needs celebrated and remarked on. The extreme views that some of the more prominent spokespeople in what might be called the International User and Survivor movement were rejected by the vast majority of people but it is a bit sad that the people I met had to say the sorts of things that you will have learnt and already know as part of your basic training in becoming social workers.
So what did people say?
First of all they want you to start off with the assumption that people can make decisions or at least can make some decisions even when obviously very ill. Too many people found that all aspects of their judgement were queried when they were at their most distressed, and maybe, for some people this is the case, but in my experience this is rare. Usually when we are desperate we still have opinions and ideas and views that need listened to. A rush to take control of everything is not always welcome, it can make us feel powerless and afraid. Giving us as much say and as much a chance to participate as possible and the least restriction we can have is what some of us would like, even if sometimes we also need and wish to give responsibility away.
And of course remember how you approach people, if they feel that they are in an alien place with people who do not have time for them, maybe patronise them and who have just taken their freedom away then they are unlikely to even want to speak with you let alone participate in treatment and yet it is these chances for interaction at such times, these chances you have, to give messages of respect that people can remember and which can make subsequent relationships more positive.
And remember the people in our lives, an advance statement can be invaluable, as can a well written crisis plan but sometimes, especially if we haven’t made such documents, we may have people around us who have a deep knowledge of us and who we trust. They may not be our closest relative, they may be a friend or for that matter a worker that we know well and trust. Such people can be invaluable in finding out how we would like to be treated, know the sort of decisions we might have expressed when we are well and equally be wonderful at helping us understand what is happening to us. It is their relationship with us that can sometimes take away the tension of the situation and the isolation we feel.
It feels really silly to say this but although supported decision making can be arrived at through advance statements, powers of attorney or advocacy it can also be completely dependent on the attitude people have about us. When we are distressed and maybe angry too and when all the forms and rigmarole about admission seem so divorced from the reality it is that we have found ourselves in. Some warmth and respect, some gentleness and explanation and time can lead to us feeling better about our situation, can help us trust you, can mean that we calm down enough to be able to eventually consider some of our options.
The final bit of the paper on supported decision making is on another aspect of working together. While we did not seek views on this subject, all the groups we met said that the need for detention would decrease and therefore the existence of autonomous or supported decision making would increase if we had the services we need to maintain us at home, the places to go to and the people we need to talk to when we are in crisis: all those bits that maintain our wellbeing and make relapse less likely.
I think the perception that user groups have of a strained and almost fractured service are also shared by many professional groups, just last week I was talking with a mental health team who said that demand for their services has doubled over the last few years but that their staff complement has remained the same or decreased.
I don’t think it is distorting reality at all to say that there is a great deal of pressure on services, on you, and on us, as service users, who maybe do not get all the support that we might once have expected, and, while I wouldn’t recommend revolution and so on, after all I do work for the Mental Welfare Commission! I would recommend that we talk to each other, that in your local areas or nationally, that you seek out support groups and advocacy groups, compare notes; see what they think are the problems and whether that fits with your own assessment. See if between us we can find solutions, things we might say together in some form of unity.
That report which I am happy to e.mail you if you wish is going to be placed on our website, but has already been commented on by people from Yale University, Kings College London, Melbourne University, Belfast university and the people carrying out the review of the English Mental Health Act.
Moving on to a few other reports that capture the views of people with mental health problems and which again say pretty obvious things but might be of interest.
Earlier in the year we spoke with over 200 people about the purpose of a psychiatric hospital.
We found out that when people are ill and need a hospital admission that they want a safe place to go to and be looked after. Sometimes they want treatment and medication and sometimes they want a chance to find peace, to be cared for and looked after: to get a break from the responsibilities of coping in the ‘real world.’ A chance to just ‘stop’.
They want to be around loving compassionate people who will listen to them and help them talk about the things they want to talk about without judging them.
They want things to do and places to go outside of the hospital, especially the natural world.
They want support from their peers but also from staff. Many people prize the sense of community and belonging that existed in some hospitals some time ago.
They don’t want to feel frightened or to feel too controlled but equally some people do not want so much freedom that they can take rash decisions about their safety. They don’t want to face meaningless rules, instead rules should fit their needs. They want to be sure that they have their rights and needs protected.
Some people would like to be separated from people with addiction issues and not to have to worry about being exposed to illegal drugs or alcohol on the ward.
On a practical level, people want a pleasant environment, good food and adequate facilities and support for visitors and families. They want to feel that they will get better and benefit from the stay and do not want to be bored. They want admissions that last as long as they feel they need them. They want to be able to participate and to have a sense that they might heal and recover. They don’t want to be moved constantly and want to be sure that there is continuity and consistency in their care. They don’t want the weekends to be too empty and don’t want to be scared of the thought of admission or ignorant of what might happen to them during their hospital stay.
Some people would like to see alternatives to hospitals, therapeutic spaces for people in crisis and people who need to retreat from the world. A small number of people worry that a concentration on hospital care can detract from the non-institutional care that they might prefer.
The reality is that some people’s experience does not fit these desires but some other people have said that care and hospital treatment has improved over the years and that generally they get the treatment and respect they want.
The next report that is also about to be released is about the degree of autonomy we want in our care. This report involved consultations with 165 people.
We found out that the desire to have autonomy compared with wanting to give away some responsibility varied and that sometimes people wanted a combination of the two. This depended on a number of things, such as how ill a person was (The more ill they were, the more people tended to want to be free from exercising a lot of responsibility), what their past experiences were, what stage of life they were at and who they were as people. Some people very much wanted looked after while others desperately wanted to remain independent at all times and found any form of coercion or control offensive.
We also found out that people’s desire for autonomy varied considerably with the treatment and conduct of the people looking after them, if people were rude and dismissive or patronising, people not only found it hard to trust people and accept care they also found it hard to participate and co-operate.
We also found out that some people could not participate in care or seek help and that this could be because of attitudes, stigma and illness.
We found out that some people very much wanted help and support and a chance to be looked after but some services were such that they would not willingly approach them and some of the services that they wanted were not available to them or did not exist and therefore the question of whether they wanted to have autonomy or give away responsibility was irrelevant.
We also found out that many people rely on their families for support and that sometimes families are not able to provide this or do not have enough information and help themselves to help.
And at last I am on the final report that is about to be completed which is about legal representation and which may be of interest to you.
With this report, which has so far, involved about 80 people we found out that:
The experience of mental ill health itself can make it difficult for people to navigate and manage in the justice or legal system:
People may not be able to give instruction,
May have issues around organisational ability,
They may not be able to take in information
They may have Issues around motivation, mania, paranoia and depression all of which can make representation and instruction difficult
Access to legal representation can also be an issue due to :
Lack of access to specialist legal advice at the point this is needed
Lack of knowledge by legal representatives of mental illness and mental health law
Lack of effectiveness of legal representation
Cost
Lack of information
Past experience with the justice system
As I said earlier these are all pretty obvious findings and may seem a bit pointless because of their very obviousness but to me it is important that we do a get a direct view from people with a mental illness on issues like these, hearing direct in this way is hugely valuable and wonderfully enjoyable for me and I would hope would influence us at the Commission, you as practitioners and maybe the policy makers too.
Well in terms of what people with lived experience have been telling me in the Commission lately, I think you are now pretty up to date, maybe more so than some of my colleagues at the Commission. I hope it was interesting.
Maybe we can use the remaining time we have to have a discussion or ask and answer questions.
Thank you
https://www.mwcscot.org.uk/ for more information
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