I used to go out at night. I wasn’t a vampire, I was a PhD student in London. And I wasn’t very well. I generally had trouble doing many of the things that I wanted to. I thought that people were following me. Going out under the cover of night when not so many people were around was as much as I could handle for much of the time.
I got lucky. I could go into university at night and work. I had 24-hour access. And I had a pretty good level of support from my local mental health trust.
But I was isolated. My problems went in circles to some degree. I needed to try out being among people. But that was easier said then done. There seemed to be no ‘half-way house’, no way of trying things out and seeing what happened in a safe space.
A few years later, I had joined McPin as their Public Involvement manager and found myself working with Daniel Freeman and his team at the University of Oxford. They were carrying out research into many of the problems that I had experience of, and were interested in exploring whether virtual reality (VR), a long-time interest of the group, could help people with mental health problems.
Try things out and see what happens
In 2017, Daniel asked if I would be involved in a large study to use virtual reality to help people with psychosis in everyday situations. The idea being that you can give people the chance to try things out and see what happens in a virtual environment. This environment is real enough to simulate an actual situation but not so real that it’s overwhelming for the person. This enables people to ‘learn’ what it is safe for them to do. This study was dually funded by the NIHR i4i funding stream and is now known as ‘gameChange’.
When gameChange started in June 2018, it was McPin’s responsibility to find out what everyday situations are difficult for people with psychosis. We recruited a group of eleven people who have experience of psychosis to find out. This group became known as the gameChange Lived Experience Advisory Panel (LEAP). They gave us specific situations that had been problematic for them, such as going into a café and ordering a coffee, getting on a bus, and so on. We recruited many more people who came to workshops facilitated by staff from the Royal College of Art, the project partners responsible for designing the virtual environments based on the suggestions of the LEAP.
The VR treatment is now fully developed. Next month, 432 people with psychosis will begin to be recruited to the study. Half will receive the VR treatment and half will not. It’s been intense to get to this point … Almost every aspect of the VR treatment has been developed together with people with lived experience of psychosis. This has involved hundreds of hours of input from people with experience of psychosis and all the different versions of the protype VR treatment have been extensively user-tested. This was an essential part of the process to ensure that the treatment was relevant and useful to the people it was intended to help. In the world of technology there are numerous examples of what happens when things go wrong. Does anyone remember the debacle that was the Windows Vista operating system? Or perhaps Google+?
My job title at McPin is now ‘Head of Public Involvement’ and it is my team’s job to help our project partners carry out research in step with people with lived experience of the phenomenon of interest. At McPin, we think a lot about how to do this in a meaningful way and while working on gameChange, I’ve faced questions – including from my boss - whether our VR testing sessions are ‘active involvement’ or not.
Active involvement in this case means working with people with experience of psychosis to make changes to the way the gameChange therapy is designed or carried out. For example, a member of the LEAP suggested that peer support workers could help deliver the VR therapy rather than a facilitator without lived experience. Being instructed in how to use the equipment by a peer facilitator and being debriefed by them afterwards not only creates a chance for genuine empathy but it should also mean that conversations about how to build on what the individual has gained from the therapy and how they can take it into the real world come from a place of true understanding, based on shared lived experience. This suggestion was taken up and peer support workers are to be employed across each of the study sites. In Manchester, there will also be a service user researcher called HeatherPeel who will be supporting the study locally.
Someone simply taking part in the trial phase of the treatment is not involvement, in my opinion. This is because their participation is a bit more of a one-way process. The study team will gain data from the research participant but there is no opportunity for the individual to influence the design and conduct of the study as it has been set already.
In the end, I think that it’s all about having a genuine collaboration - from the get-go -in which real changes are made based on the input of people with lived experience. I’m delighted to say that this is exactly what happened.
I hope that the gameChange study will give people that chance to try things out in these virtual half-way houses that I needed when I was a student. I hope that it will help people on their way to doing things that they want to do – without fear.
We will see what happens next. But first and foremost, I want to say thank you to all the members of the gameChange LEAP and the people that attended the workshops with the Royal College of Art. The study would not exist without them. We are just one year into a three-year study. I have high hopes for what will happen next.
You can view a short video showing some of our LEAP members talking about the VR treatment here.