The latest blog post is, for a change, not written by me but is a full-length interview by Laura Hemming, a PhD student in clinical psychology at the University of Manchester. Her research concerns the role of alexithymia in suicidal thoughts and behaviours, and as part of her research she consults ‘experts by experience’ to ensure her work is informed by those who it affects the most.
You can read a shortened version of this article here.
Almost half (44%) of people in England may experience a mental health problem in their lifetime and it is commonly reported that people experiencing mental health problems may also face challenges relating to stigma and discrimination. For instance, one survey found that 88-91% of surveyed people using mental health services reported one or more experiences of discrimination.
Further to this, it is thought that around 22% of people using mental health services will also be in contact with at least one other ‘cluster’ of service, e.g. substance misuse. This reflects the issue of complex and multiple needs which affects many people, and may serve to amplify the level of stigma and discrimination experienced.
Time to change is a charitable organisation that aims to reduce the stigma and discrimination experienced by people with mental health problems by encouraging the public to have more frequent and meaningful conversations about their mental health. In tandem with this, people with mental health problems are increasingly being encouraged to speak about and use their experiences to promote change to both mental health services and research. This has recently been recognised as something which may be empowering for individuals, and may serve to combat some of their experiences of stigma and discrimination.
Here at the University of Manchester, we aim to ensure that our research in the faculty of biology, medicine and health is in line with our social responsibility priorities. This led me to develop a patient and public involvement group to assist with my PhD research into understanding prisoner suicide and aggression. In this article, Gary speaks to me about his experiences of multiple complex needs, and also about how these life experiences have helped him in his role as an expert by experience.
Gary, could you tell me a little bit about your experiences and understanding of multiple and complex needs?
I wasn’t aware of the phrase ‘multiple and complex needs’, but then I was diagnosed with having all four; substance misuse, reoffending behaviour, mental health and homelessness. Not necessarily all in that order though – they all link in with each other.
I was homeless and that’s one of the multiple and complex needs that can lead on to the rest. Now, they [services] got me off the streets in [year], and into my own flat. But, I took the streets with me. I was still vulnerable you see and I ended up using [substances] again. Substance misuse – there’s another multiple and complex need. And I fell in with bad company. And my flatmate, for some reason, he kicked off one night, and he [physically hurt me]. And while I was ringing the ambulance to say look, I need help, he set fire to my front door. So I broached it with the council, the housing council, but they didn’t seem to be able to put me in a safer area, while they were dealing with re-housing. So, I thought the best thing for me was to go back on the streets. I started drinking and using [substances] again. The lack of sleep, the constant moving on by the police, the constant paranoia that I was going to get arrested because I was in the wrong place because of my ASBO [Anti-Social Behaviour Order]. Everything built up, the stresses built up so I started using [substances] more, everything just rolled into one and that’s when my mental health started to get cloudy.
I wondered if you could tell me a little bit about what, if any, your experiences of stigma and discrimination have been?
The police. I’ve been doing some work with the police around mental health engagement. It was non-existent for me. Some years ago, I’d been in police custody for 37 hours and then from there I went straight into prison. A couple of days later when I was in prison, nobody had even noticed that I was going through some form of psychosis. And then this lad actually said ‘get him out of my sight, before he hurts me or I hurt him. His head’s gone’. So that made me feel even worse. The police just thought you was creating [trouble]. At the time that I got arrested, I’d given up at that point. I’d got a bottle of brandy and I’d given up. So I ran at the police and I smashed the bottle. But then something clicked in my head that what I was about to do, I was looking at some serious [prison] time. So rather than hurt the policeman, I hurt myself. And for [the police] not to see that I needed help with that, do you know what I mean? And I was like well, are these people not aware that I need help? Are they just perceiving me to be a drunken troublemaker on the streets? You know, I need help here.
Employment rights. I’ve got a void in my life of 10 years. It’s been, like, a decade. A decade that I can’t get back. And it’s hard to explain on employment forms that this is where I was. If I could get a video camera, and just say ‘look at this’, put it all on a DVD, and just say ‘watch this DVD’- ‘that was me, this is where I was. That’s what happened for 10 years. But this is who I am now and this is where I wanna be’. That would be a lot easier. But actually putting it down pen to paper, it brings back how much you’ve lost out.
It’s hard actually getting to grips with emotions again. And actually realising that they’re normal emotions. Because a lot of my life for that decade, what I considered to be normal, other people perceived to be abnormal and vice versa. It was people shying away from me because I wasn’t right. So it’s working my way through that. It wasn’t nice to have people perceive me as abnormal, because deep down, I knew that that was not me. That made me feel frustrated and that built up into a lot of rage. I felt hate for the first time. That wasn’t very nice actually. I was afraid of hurting someone so I did actually self-harm, and it was the first time I’d self-harmed since I was thirteen. And then I felt even worse because I was thinking to myself, ‘look, you’re [older] now, you shouldn’t be doing what children do!’ But it was like a release.
I was quite ashamed when the Psychologist diagnosed me with level 2 PTSD [Post Traumatic Stress Disorder]. I thought that was only for soldiers. But they said the ongoing trauma that you’ve had has been a cycle. So I was just adding bricks to that bag, while I was trying to swim and it was dragging me down. Each time I was getting arrested, placed in prison, I was coming out to the streets, back to the same old, and it was just another brick, another brick in that bag. And I was going down, down, down. I scared the CBT lady because I said ‘I keep getting flash thoughts and feelings, where I think, if somebody says the wrong thing, I’ll snap’. And she said ‘you’ve got to go up a level – I can’t deal with what’s going on in your head’. So that made me feel even more paranoid about it. Was I a fruit loop? Was I a menace to society, so to speak?
I know that you’re involved with lots of projects which aim to change things so that other people don’t have to go through the same experiences as you have. Do you feel like that’s had any impact on your experiences of stigma and discrimination?
Your lived experience that you present, a lot of the time it just gets placated. But the people I’ve come across in the last eighteen months, they’ve actually acknowledged my experience. And they’ve been appreciative of the experience that I try to bring. It’s like the work we’ve been doing with your PhD. That’s going somewhere, you know, that’s tangible. The group, we all gel. We all come at different levels, but we all have relevant things to say. And we’re all really appreciative, each one of us, of our lived experience. And we’ve seen the work actually progress to where it is now. So we’re seeing something tangible arise from that, it’s not been placated, it’s not been, you know, ‘thank you very much for your time, now jog on. We’ve ticked our boxes’.
It’s like this grassroots organisation I work with. We’re trying to advocate change from within and utilise people’s lived experiences positively. It sounds like I should be in speaker’s corner doesn’t it? But that’s how I feel! And for me to say that is a big step because I would have wanted to say that maybe 2-3 years ago, them thoughts, them feelings were still in my head, but it wasn’t coming across like that. It just came out ‘meh’.
People have said to me quite often over this past year, that I’ve ‘owned’ what’s going on. I’ve actually acknowledged the fact that yes, I have got PTSD and I shouldn’t be ashamed of it. I’ve actually been asking the right questions and I’ve actually pulled people and said, when they come out with different terminologies, acronyms, can you just explain yourself? And I’ve passed that on to other people where I’ve seen them being a bit flustered, and I’ve actually said look, they’re not having a pop at you, it’s just that you’re taking what they’ve said the wrong way, this is what they’re trying to say. You know I put it into layman’s terms. Because I’ve had to go through that myself.
But utilising my lived experience, it’s like, I like to use art quite a bit to visualise a story. I used it when I was working in a rehabilitation unit, working with people in recovery from drugs and alcohol. I mean, the services are swamped. But people are trying to change how things are going. And it’s great to see that social responsibility is beginning to happen, and Universities are thinking about what they can offer. It’s great talking to you and telling you about what’s happened, and knowing that it might be used down the line. It’s like you’re influencing further down the line, in a small way. It’s great, it’s a good feeling. I think it’s great getting these experiences across to young people and letting them know that it’s okay to say ‘look I need help’. A lot of people are going to have multiple and complex needs, and it’s about being aware of that.
If you would like to learn more about the ways in which the University of Manchester is placing lived experience at the heart of its research, you can find out more here.
If you have been affected by any of the issues raised in this article, you can get support from the following sources:
The Samaritans – telephone: 116 123
Mind – telephone: 0300 123 3393, textphone: 86463
 Names and other details have been changed to preserve anonymity