LIVED EXPERIENCE LED RESEARCH

MENTAL HEALTH RESEARCH NETWORK : STIRLING UNIVERSITY –

LIVED EXPERIENCE LED RESEARCH

2012

GRAHAM MORGAN HUG (Action for mental health)

Hello

Thank you for asking me here

I have been asked to talk about research and, what’s more, research done by people with experience of mental health problems and I have been asked to use the work of HUG as an example of user research.

I have to disappoint you if you were hoping to gain a glowing picture of how we can do it right.

I think many people would regard the work we do in HUG as miles away from research, I think they would say that it lacks rigour and objectivity. That there is an almost complete absence of any methodology in what we do and, if I’m honest, I would agree with them.

What we do is find out people’s views and opinions on aspects of mental health and the lives they lead and in a moment I will talk about that about how we do that and where we could improve and where we fail. I will also talk about what we do once we have created our reports and papers and I will say a wee bit about the effect of these reports. After that Frances who is a real researcher and happens to be a person with experience of mental illness will talk about how that affects her work.

But first I will talk about involving us in research or setting us off with the bit between our teeth to discover the mysteries that research can uncover or alternatively the statements of the obvious that need given gravity through the dignity research confers.

Why involve us as people with experience of mental ill health in the first place?

There is of course the old mantra from the disability movement of “Nothing about us without us” and this does have a moral and ethical power to make us pause and consider. When people delve into our lives and try to find illumination and solutions to our problems they need to do so in such a way that ensures we are treated well and with empathy.

Our dignity relies on being approached with respect and sensitivity and this can sometimes be ensured by making sure that the people who research our lives and experiences know first hand what they are talking about.

We can make assumptions that the motivation of fellow users as researchers is almost guaranteed to be one that aims to improve our lives and to improve them in ways of which we are likely to approve. And I would agree with this: if we have a common suffering or experience we will often be in tune with the solutions we want to achieve but not always: the user movement is full of people with differing perspectives and the respect we might naturally feel when meeting someone with experiences and opinions that are aligned to ours is not automatically there.

For instance I believe in the necessity of detention when we are a risk to ourselves – to have me researching this with a group of people who are convinced that it is a fundamental breach of human rights might inspire no more confidence than if it were carried out by a mental health officer.

And equally, the other way round; I very clearly remember an organisation that carried out research on medication with us. The outspoken views of one of their researchers against medication quickly meant that those members of HUG who approved of medication quickly shut up and so, when we think of user research, we also need to respect the need for the integrity of the approach we take to it and our own background, whether we are users or professionals or both.

This however doesn’t stop the fact that when research is carried out that, if it is of any use will almost certainly affect our community, if it does this we or representatives of our community must be involved in some way, if only as a courtesy to say “Please do me the honour of giving me access to the community you come from.”

Why should we be central to research? Because the answers we get may be different to those that would be gained if we weren’t users, put two users together and the unspoken connection can create ease and warmth, it can create the environment in which people feel safe and free to speak of how they feel and of what they believe in.

Why should we be central? Well, the questions we ask; the subjects that we feel are important are likely to be embedded in our experience and targeted in what we want to change rather than what other people think we should want to change.

When we set the agenda for research, if we are truly in touch with our community, we are likely to reflect the needs and aspirations of that community.

I read a book about user research last year. It said that all research, especially social research, however much it may try to be free from bias is affected by the background and values and perspectives of the researchers. It said that user research can be more frank and open by being clear about the perspectives from which the we, the people with direct experience are looking at the subject. It said that by getting us involved in research we could find ways of evening the balance between vested interests in the research field. It said, in effect, that research is political and that we have a right to play a part in that arena.

And then it seemed to say this is an excuse for work that is blatantly subjective. I can agree with the political side of things but I worry that when we bring our personal agenda into the outcome of the research, whether willingly or not, we are at risk of debasing the integrity of what we say is research.

That is partly why I say that the reports that HUG has produced for the last 15 years are not research. Our reports attempt to be the voice of a particular community, they are the product of a group of people who are explicitly trying to change the world for people with a mental illness and they are produced by people with no background or training in research.

If they involve enough people and are produced with enough sensitivity to be close to a reflection of the views of an even larger number of people then that is fantastic. If they raise issues that can influence how we are viewed or how policy is developed so much the better, because that is our aim but to give them the label of research as some people do, does puzzle me.

Anyway for the sake of this talk I will assume that what we do is research and for the sake of clarity I will spend the rest of my time explaining how and why we try to represent the voice of our community.

Hug is a group of 470 people who all have experience of mental illness, we could be seen as a community in that we have a shared experience, and have connections of friendship and acquaintance within that community.

We also have a shared goal of improving life for people with a mental illness and for many of us the ambition to make mental health and emotional literacy, a language of common currency across society. The vast majority of us would like stigma to disappear and many of us share common opinions about what would improve our lives. But as in all communities we are a rich and diverse collection of individuals, we hold a huge variety of political views and moral opinions and within the health system we range from people who think that the psychiatric system is a place of barbaric oppression to those that think that psychiatry is all that keeps us alive. Our task in HUG is to try to represent that disparate voice.

Why on earth do we need a voice? I suppose when you meet people with similar opinions and as you get to know them find bonds that join you together and find a sense of purpose and shared value, you can wish to speak out on these subjects; to be heard and recognised is important.

If you are a part of a community that has traditionally not been heard and which has in the past been terribly discriminated against and which still experiences isolation and alienation from mainstream society that voice can become even more important.

If, as applies to many of our members, you feel oppressed and undervalued, if you look around you and realise that the vast majority of your friends and acquaintances are unemployed, the media portrays you in cruel and inaccurate ways, if you realise that a substantial number of the homeless and those who are in prison have a mental illness, that your opinions are often ignored, that you can be seen as a burden on society and a burden on family and friends. If this is your experience as it is for many of us and if on top of this you are helped by a system which appears to take decisions for you and decide what is good and bad for you whether you agree or not. If this is the case then you can feel that almost all you have left is the dignity of your opinion, your experience and your beliefs and then, to be heard and recognised and listened to becomes far more than the simple gesture of dialogue.

It is a symbol of recognition and empowerment, it is a symbol of standing up and saying I will be heard and I will join together with other people who also have a common desire to be heard and once we are heard, if it is done right, once we are recognised, if it is done right, once our opinions are given validity, if it is done right. We can find ourselves in a place where we feel respect and value where we regain our dignity and stand that wee bit taller.

Hug has been trying to do this for the last 15 years, it has also been trying to include those people whose motivation is to give thanks and to give back by speaking out. In other words our motivation is not all based in a deficit model of the psychiatric system or our own community.

Sometimes we are more successful than other times: not everyone shares our voice even though they have similar experiences. Not everyone wants to be a part of what we do: in fact some people look on us with suspicion, either as instruments of confrontation or symbols of complicity. Not everyone feels a sense of belonging in our group and those that do may find the struggle we are engaged in wearisome rather than joyous but for some, we represent a brief glimpse of a voice and a network which can be relied on to help us speak out and join us together in common purpose.

There are two main elements to our work, that of speaking out and the perhaps more invigorating task of raising awareness and challenging stigma and discrimination. That side of our work can involve anything from creative writing, to drama, to d.v.d. production to media appearances but is not the subject that I will talk of today.

Today I will talk about how we find out the opinions of our membership.

Every three months we travel around the Highlands meeting our members in places where they gather such as drop in centres, training units, hospital and people’s homes.

This is important in itself; by meeting people where they are, where they live and lead some of their lives, we find that we get into contact with a substantial number of people who may not automatically be the sort of people to join a group such as ours. People, who maybe share our views, but are not necessarily the highly motivated people who travel long distances to engage with causes that they are committed to and well informed about. This simple fact gives me a feeling that we are quite likely to be in touch with people who are more likely to be representative of a wider community than if we concentrated on a much smaller number of signed up highly active members of HUG.

A branch meeting will involve a number of things. I will give an example of the last meeting which we held, which was in Golspie. It was a small meeting, attended by a few people who attend the local Tag unit and have been to our meetings before, an active local HUG member and another active HUG member who had come on the trip with me from Inverness.

We started the meeting with a report on what we have been doing over the last few months so that people could see a direct result to the constant meetings we have held with them over the years. Then we consulted on the work of HUG and what we should be doing in the future. Here we found out that some people know little of what HUG does, despite attending meetings but that when they do hear of it, they are very pleased with it. We also found out that we should continue to concentrate our awareness raising activities on young people.

We then discussed issues to be raised at future meetings, my memory escapes me here but I think we chose to continue campaigning around the cuts and finding out more about peoples’ experiences of welfare rights changes.

We then moved on to the meat of our discussion. This time we were discussing drugs, tobacco and alcohol and mental health – these three subjects were some of those that had been requested at a previous round of HUG meetings in the last summer. I had selected them as suitable topics and our advisory committee had agreed to them.

We had loads of questions, varying from whether the smoke ban was a success, to whether smoke free psychiatric hospitals were a good or bad idea, then there were questions about whether minimum pricing of alcohol was good or a ban on alcohol advertising sensible, followed by a debate on the merits of decriminalising drugs versus compulsory treatment for addiction. The questions were chosen by myself and a small group of HUG members at one of our Inverness based meetings prior to this wider round of meetings.

The style of the meeting was informal and friendly with everyone being encouraged to participate and join in. We had coffee and biscuits provided by TAG. At one point, one of our members left for a cigarette as she found the subject vexing before coming back in to participate again.

I recorded the answers people had directly onto my lap top and then we moved onto the final topic.

We always leave room in a meeting to catch up on any issues that people want to raise. On this occasion we had been unable to publish a similar report on current issues gathered last year. So we went through the draft report. There were about 20 different subjects we wanted people to confirm that they were happy for us to raise and a whole list of recommendations that another HUG group have been working on. On this occasion everyone agreed that they were happy that everything was still important but they requested that we add the subject of spirituality and when this is integral to our wellbeing and when it is a resented part of our treatment.

At the last moment just as we were packing up they added the future of the local drop in centre whose funds we are worried are at risk and then we set off again back through the freezing fog to inverness to get ready to repeat the whole process another 13 times across the Highlands.

In this way we do a number of things. We involve our members in setting the agenda for our research and in developing the questions. We travel throughout the area to gauge opinion from Thurso to Nairn and Portree to Oban. We make sure that we feed back the results of all the views and experiences we gather and we ask for ideas about how to take them forward.

We are also practical, the majority of our membership agree with what we do and are happy to participate in our meetings if they are around but equally the majority are not so motivated that they want to devote considerable time and effort to creating change, for that they rely on us as paid workers and our more active members.

There is nothing wrong with this, there are few communities where all the members are hugely engaged, in fact we are lucky that so many members of our community do us the honour of joining in the conversations we hold.

When the round of meetings are finished my job is to turn the views of our members into a report of the range of experiences and views we had on the subject. In the case of the current issues report this will take a few weeks after the round of meetings finish in march to complete whilst the addictions one could take a few months as we already have a queue of reports on welfare reform, suicide prevention, wellbeing and self stigma waiting to be completed.

A report produced in the fashion that we produce it can be hugely frustrating for policy makers and planners. It is imperative that we respect the voice of our membership and therefore, whilst our reports may contain recommendations, these may also be contradictory and the views of our members may clash in a number of areas; in reality there is a great deal of congruence in what we say collectively, for instance it is already clear that most of us object to removing smoke rooms from the hospital but we are divided on the smoke ban, some of us saying that despite the inconvenience it causes it has dramatically improved the health of Scotland and others saying they wish they could still smoke in pubs and that smoking should be seen as a human right.

Once the report is finished I take it to our advisory group for approval and the sense that it does indeed reflect the views of our membership. Then we distribute it. This is almost entirely done by e.mail with a request for people to tell us what they think of the report and what they have done with it. We then put it on our website.

Once we have done this we breathe a huge sigh of relief at another piece of work completed which is where we make our biggest mistake. This should in fact only be the start; we should be taking our views to policy makers and planners across Scotland and within Highland and we do to an extent but not enough. We do present them to committees and we do frequently hear that this or that report has been quoted in this or that policy document but we don’t do that half enough.

So lessons – research, like ours, to have any point to it must have a purpose; it needs to inform the debate on services, lives, treatments and attitudes. Placing it on a website in the faint hope that someone will respond to it as I often do is not good enough. Research such as ours does not appear in well known journals so we need to find other ways of making sure that it is heard more widely and once it is heard that the voice of our members is then acted on.

When we engage our members in the discussions that we do we must be sure that they gain from these discussions. It is a great gift to be given another person’s opinion. Those opinions need to treated with respect and the setting in which they are expressed should also be as respectful and mutually supportive as possible whatever the variety of views are that people hold.

I sometimes wonder how we should present our reports, on occasion I try to let my pen express the depth of passion that I have heard amongst our membership and on others I try to show the results of our discussion in a relatively formal way in order to give it a look of respectability and gravity that a polemic may not hold. I don’t know which route is the best one.

I’ll finish here. We must have produced about 50 reports so far. All of them have had an impact of some sort, sometimes we are good at getting feedback on their effect and other times less so. We need to improve on this. And we need to be able to tell our membership what we have done with their voice – when 100 people participate in meetings we are given about 150 hours of time, this is a huge thing to be given – it feeds into a body of literature that our members can use to be sure that their voice is joined with others- when we come back to our membership we need to be able to tell them how we have dealt with their voice and what impact it has had.

As long as we continue to be heard then there will be a point to what we do – whether our vision of a just and equal society that is accepting of difference and services that minimise or even stop our suffering will ever happen I don’t know but this sort of research or, as I prefer to call it voice, is one step on that path.

Frances will now be far more practical and will tell you a little about her experience of being a real researcher whilst also having mental health problems .

Thank you.

You can find out more about HUG (action for mental health) at https://www.spiritadvocacy.org.uk/hug

(Photo: Arrochar, Argyll, 2020, to remind us that research also happens among the mountains and lochs of the land!)