Lived experience facilitator Gill shares why social groups offer more value than they’ve been given credit for, as well as some tips for setting up your own.
Gill Macafee
Are social groups the way forward to support people with psychosis?
Having facilitated such a group for two years, in my opinion, it is a definite yes.
As a lived experience facilitator, I found the whole experience an amazing journey of mind-provoking growth and I think the attendees benefitted greatly too.
Around 7,500 young people in England develop psychosis every year. Getting support from Early Intervention in Psychosis (EIP) services in the first three years can improve long-term outcomes but at least a quarter of all young people drop out in the first 12 months.
I have slipped into psychosis on occasions over the past 25 years and became a volunteer Peer Mentor in 2018, following my last psychotic episode in 2016. Working in an inpatient environment, my work evolved into group work and I became interested in the dynamics of groups within the mental health sector.
For the past two years I have been working as the PPI Lead (Public and Patient Involvement) on a research project called EYE-2 that aimed to develop ways to keep young people engaged.
One of the approaches we trialed was setting up social groups for young people. It was hoped that these groups would help the attendees to remain engaged in EIP services and consequently reduce the risk of a relapse.
Without realizing it, each meet-up helps the members progress in their recovery and live a more positive life.
From my experience, social groups are wanted and needed by mental health service users.
They provide a social activity looked forward to by the attendees. They improve people’s confidence, social interaction and self-awareness, whilst reducing social anxieties, social exclusion and fears about the outside world.
Without realizing it, each meet-up helps the members progress in their recovery and live a more positive life, in the knowledge that they are not alone. The pace at which group members recover is made faster by other members being present and sharing experiences, along with solutions to shared problems they may have.
They have a great sense of belonging and purpose in life. For the one day a week that the group meets up they have routine, control and structure.
As well as the power of social groups, I have learned a lot about facilitating one. Here are four things that I think could help others thinking about doing something similar
Whilst the attendees enjoyed activities such as bowling, table tennis, walking, games of pool and darts, quizzes and trips to the cinema, the favourite pastime for group members was a pub meal. I think the reason for this was that their basic needs were fulfilled.
Group members who weren’t keen on doing the things agreed upon by the majority still showed up and were pleased with themselves for doing so.
They had a chance to chat, share good and bad news, laugh together and simply socialize with people that they felt comfortable around. Also, they were enjoying a hearty meal whilst in good company.
Although this was their favourite pastime, I liked to vary things and thought it healthier to help them feel comfortable in other surroundings, such as at a bowling alley. During each session we would discuss the following week’s options of things to do and would go with whatever was favoured by the majority.
I found that group members who weren’t keen on doing the things agreed upon by the majority still showed up and were pleased with themselves for doing so. Every three weeks or so we would unanimously return to the pub for a meal.
We had been running the social groups for eight months when Covid hit. During this period it was possible to maintain a connection with the group members via Microsoft Teams. There was a group chat weekly, where everyone literally just caught up with each other, talked about everyday life and saw how we were each coping through these difficult times.
We also did activities that are easy to do online, such as quizzes. Everyone agreed that they didn’t want visual contact, with two people saying that they felt uncomfortable seeing themselves on screen. This meant that the only technological equipment needed was a mobile phone.
Each of the four group members joined weekly throughout the 14 months of the pandemic, talking amongst themselves for at least an hour, sometimes longer. Although I was the host, I felt it important to take a back seat and allow them to talk to each other. I had maintained verbal contact with them separate to the group chat so encouraged and welcomed communication between themselves.
The fact that these groups continued during such testing times is testament that social groups do work.
In May 2021 face-to-face contact resumed and we went for a pub meal. The group members welcomed the return of weekly face-to-face sessions and we welcomed four new members. The group increased to eight attendees and remained so until the end of the study on 31st July 2021.
I think that a key factor to the success of these groups was my lived experience.
I think that a key factor to the success of these groups was my lived experience. This created relationships within the group which were valued for their reciprocity and enabled a build-up of mutual understanding.
My own lived experience helped me to support the group attendees with struggles that I had overcome and gave everyone hope with their own recovery. Also, I was able to talk with them about certain things relating to shared experiences.
This lived experience aspect helped to create a bond between the group. I felt at ease sharing my lived experience but only shared things when it seemed appropriate to do so. For example, I share my experience in the hope that it inspires others to recover, whilst knowing that the pace of this recovery is unique to the individual. We are each the same but different.
They were also able to identify with each other on certain things that they maybe didn’t identify with me on and it was very much a group of unity based on mutual understanding and respect.
This created such a strong bond that the members would do additional social activities outside of the organized weekly session. They grew and blossomed as a group, as individuals and as friends, and helped each other along their recovery journeys.
As the EYE-2 study was coming to an end, it was particularly exciting to see one of the attendees take it upon himself to arrange for everyone to meet up for lunch without a facilitator present.
This was the ultimate goal of the study – that one member would gain enough confidence to arrange such a thing and the group would continue beyond the study. The group was finally theirs and in their total control.
The smaller the group, the more personal it is. It was important for me to individualise the session for each member at some point during the weekly meet-up, for example, remembering that a member had a hospital appointment during the previous week and asking about how it went.
It is harder to remember such things when the group is larger. Also, some members are socially anxious and this can increase in a large group.
The work put in to set up a group will be worth it as the rewards can be great.
The experience of EYE-2 shows that social groups are more valuable than they have sometimes been given credit for. I think that once referrals are made, a facilitator should be able to use their lived experience and their peer skills to create a group of unity, understanding and mutuality.
They can form a socially comfortable environment where everyone feels valued, respected, heard and appreciated for their part in the group. The work put in to set up a group will be worth it as the rewards can be great, both for the attendees and the facilitator.
Following a troubled young life, I had my first diagnosed psychotic episode in 1995. Many hospital admissions followed.
Things changed in 2016 when an inpatient stay was followed by 30 sessions of beneficial and insightful Cognitive Behavioural Therapy. Already having insight into psychosis through my lived experience, I gained a lot of knowledge about myself and particularly my thought process. My paranoia became less intense and I am now able to rationalise.
It was around this time that I became a volunteer Peer Mentor in an inpatient environment focusing on arts and crafts. What I had expected to be peer work on a one-to-one basis evolved into group work and I found myself spending three hours twice a week with at least six service users at the same time. I realised that they were creating a bond not just with me, but with each other. These groups gave the attendees structure in an otherwise mundane existence.
I was then fortunate to be given the opportunity of setting up and facilitating the social groups on the EYE2 study. I feel a great sense of satisfaction from the trial and the social groups.
The greatest satisfaction was seeing group members progressing on their recovery journey and particularly learning to do so without further encouragement from a facilitator. They got inspiration from me initially but went on to get it from and give it to each other.
Gill Macafee is the Peer Support Worker on the Let’s Talk Study at Greater Manchester Mental Health, NHS Trust, and worked on the EYE2 Project as the Public and Patient Involvement Lead.
You can read the first EYE-2 blog, on using lived experience to revamp established mental health tools, here and take a look at the social club booklet here:
