The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Dr Emma O’Donoghue – Senior Clinical Psychologist / Study Co-ordinator & Lucy Butler - Research Assistant South London and Maudsley NHS Foundation Trust

With thanks to the ACT for Recovery Team (ACTfR) Emma O’Donoghue Joseph Oliver Eric Morris Louise Johns Suzanne Jolley Lucy Butler Hernika Amisten Shirley Serfaty The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Overview of Talk ACT for Recovery Role of Service User Co-facilitators Design of study Role of Service User Co-facilitators Findings from workshop participants Findings from facilitators or ACT therapists Reflections Today we are going to be giving a brief background to our study And focussing mainly on the role of SU co-facilitators in our ACT workshops *To clarify a Service User is someone who has lived experience of mental health problems and has used mental health services We are going to discuss findings of the effectiveness of involving service users as co-facilitators of ACT workshops. This will include feedback from participants of the workshops (both clients with psychosis and caregivers of clients with psychosis) As well as feedback from co-facilitors and leaders of the groups The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

ACT for Recovery Project Now I’m going to introduce the ACT for Recovery project. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Aims of Project Implement the first RCT of ACT workshops for people with established psychosis and their caregivers Assess the feasibility, cost effectiveness and impact on service use of ACT workshops for clients with psychosis and their caregivers Assess the feasibility of training service user co-facilitators and frontline mental health staff to deliver ACT workshops for service users and caregivers The ACT for Recovery project is one of the first RCTs of ACT workshops for people with psychosis and caregivers of those with psychosis The aims of the project were to assess the feasibility of running such workshops in community settings, as well as impact on service use and cost effectiveness. We also wanted to assess the feasibility of training up SUs and frontline mental health staff (i.e. OTs, psychologists and mental health nurses) as co-facilitators The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

ACT for Caregivers Informal caregivers play a key role in service user care and recovery Service users with carer support can experience fewer admissions, shorter inpatient stays, and improved quality of life Negative impact of the caregiving role on carer physical and mental wellbeing 80% of carers report feelings of burden and distress in their role The reason we wanted to include caregivers in our project is because we know that carers of people with psychosis play an integral part in providing support to our clients. We also know that caring for a loved one with psychosis can have an impact on someone’s wellbeing and that the needs of carers are often not considered. This is one of the first RCTs for caregivers of people with psychosis. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Project Design The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

ACTfR Protocol Four 2-hour weekly sessions Followed by two, 2-hour booster sessions 8 weeks later Protocol based on passengers on the bus metaphor Use of actor-video to allow participants to approach content at their own pace Main components include Values clarification Mindfulness/noticing exercises Willingness Defusion Committed action- out of session planning The workshops consisted of four 2-hour weekly sessions, followed by two 2-hours booster sessions 8 weeks later The sessions were mainly based on the passengers on the bus metaphor Exercises included mindfulness, acceptance and defusion exercises as well as values clarification and committed action planning The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Design and Measures Randomized Control Trial Introduction/Taster session → Randomized ACT Intervention immediate vs Wait-list control Wait-list cohort offered ACT intervention 4 months later Four measurement points 1 - 0 weeks (baseline) 2 - 4 weeks (post intervention) 3 - 12 weeks (post booster sessions) 4 - 36 weeks (extended follow-up) The project was a randomised controlled design We initially offered an introduction or ‘taster’ session of the groups and invited anyone interested in the study. In this session we introduced some of the exercises that would be covered in the workshops then asked people to opt in, the randomised them to either ACT intervention immediately or a waitlist condition. The waitlist control was offered the intervention 4 months later. We have 4 measurement points (pre, post group, post booster and extended follow-up) The main outcome measures are well-being for clients and caregivers. We are also looking at mindfulness, acceptance, values and activity levels. Please see our poster for a full list of the measures The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Participants Over 2013 we will recruit total of 96 participants: 48 client participants (with established psychosis) 48 caregiver participants Facilitators 16 service user co-facilitators 16 frontline mental health staff co-facilitators In total we aimed to recruit 96 participants (48 clients and 48 caregivers) We ran separate workshops for clients and carers Inclusion criteria was broad Any client with psychosis within the promoting recovery services or caregiver of someone with psychosis Sufficient English was also required Facilitators We aimed to have 3 facilitators in each workshop (a lead ACT psychologist, a frontline mental health staff member and a service user co-facilitator) We had an average of 4 to 6 participants in each group We’re only half way through the project but if you are interested in finding out more about the project we have an accompanying poster presentation in the foyer. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Role of Service User Co-Facilitators Now I’m going to discuss the role of SU co-facilitators in the project The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Within Workshops Recovery orientated services emphasize ‘expertise by experience’ along with evidence based practice We wanted an additional perspective from a peer in the workshops Value in having peers model lived experience of engaging in willingness and mindfulness We wanted to create an atmosphere where people would feel comfortable sharing their experiences Why involve service users? Feedback from participants in previous ACT studies conducted by our research team have highlighted there may be benefits from involving service users in planning and facilitating ACT workshops, so we wanted to assess the feasibility of training up service users to co-facilitate these workshops Additional reasons why we wanted to have people with lived experiences of mental health problems to join the project was to help promote recovery and hope to participants We hoped that by having service user co-facilitators this would make the workshops feel less ‘them and us’ and wanted participants to feel comfortable sharing their experiences The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG) 12

Service User Involvement The right for Service Users or representatives to be involved in the planning and development of services (NHS Constitution, 2009) Users of health and social care services and their carers should expect to be involved, not only in individual care planning, but also in the development, provision and monitoring of services. Still a lack of SU involvement in actual facilitation of clinical interventions Complements South London and Maudsley’s Recovery College In the UK there is a growing trend of involving service users in the services that treat them. And commissioners report that Service Users have a right to be involved in how services are developed Our experience shows that is slowly increasing, but some state that Service User involvement can still be slightly tokenistic and there is still a lack of SU involvement in actual facilitation of interventions Our mental health Trust (SLaM) is just about to open it’s first Recovery College, which will offer interventions that have been co-developed and co-facilitated by mental health professionals and service users The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Recruitment How we went about recruiting SU co-facilitators Recruited by the Trust wide Service User Involvement Register. This register recruits Service Users with lived experience of mental health who want to use their experiences to support policy and interventions. We held interviews- initially we did not know how the recruitment drive would go so we also approached SUs who we have previously worked with and whom we thought would compliment the project Interviews consisted of information sessions about the workshops with a practice of some of the exercises, then we held individual interviews with participants to assess their suitability.

Training and Supervision 1 day training (mental health staff and SU co-facilitators) Experiential exercises Role play practice Problem solving Detailed manual provided Weekly supervision group Paid for attendance Weekly pre and post session feedback Training consisted of a full day’s training and a detailed manual was provided We trained both Service Users and front-line mental health staff in the training We also offered a weekly supervision groups whilst workshops were running. We paid the facilitators to facilitate the workshops and also to attend the supervision groups as we discovered from talking to other SU involvement initiatives that SUs don’t tend to attend supervision if not paid Issues raised in supervision centred on the impact of workshops and we also offered practical advice on facilitating specific exercises The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Feedback on SU Involvement We interviewed participants from the first 2 blocks of workshops on their experiences of having a service user co-facilitate the ACT workshops. So now I’m going to discuss the findings from these qualitative interviews. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Feedback from Client Participants - Themes Usefulness Excellent/very helpful Unaware that facilitators were service users Felt like one of the team Expert by experience More understanding due to shared experiences Gave credibility due to similar experiences Could relate more Hope Ambassador for recovery Put things into perspective Here are the findings from the clients with psychosis who attended the workshops Some themes that emerged, which included Most found it useful to have a SU co-facilitator However, some clients were unaware that one of the facilitators was a service user (they felt they were just part of the team) Other themes highlighted a shared understanding from people with lived experience and some also suggested that it fostered a sense of hope The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Feedback from Client Participants - Quotes “I think it was useful that a person who has gone through the experience of having a mental illness wants to share their thoughts and feelings…. The comments showed that they had similar experiences which improved their credibility. I felt I could open up more”. Here are some direct quotes from the client participants The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Feedback from Client Participants - Quotes “She understood as she’s been through it…” “I didn’t know they were a service user…. It would have been better if they had spoken about this more… It could have encouraged other people to be involved in the project”. We found that some of the service user facilitators were more comfortable with sharing their experiences of mental health problems, whereas some only briefly mentioned this at the start of the workshops so the participants were unaware until we interviewed them afterwards. We were faced with the challenge of encouraging people to share their experiences but not wanting to force them to disclose if they didn’t feel comfortable. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Feedback from Carer Participants - Themes Usefulness Excellent/very helpful Unaware that facilitators were service users Felt like one of the team Expert by experience More understanding due to shared experiences Gave credibility due to similar experiences Could relate more Hope Gave hope that change was possible Wonderful example of someone who is doing well Sense of connectedness Could relate more to them - were in the same boat Here are the themes that emerged from the carer participants Similar themes emerged from the carer participants, So again, they found it useful to have a SU facilitator As with the client workshops, some were unaware that they were a service user An additional theme of a sense of connectedness also arose - The carer participants felt they could relate more to the SU facilitator as they had shared experiences and understanding. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Feedback from Carer Participants - Quotes “I found it useful. It gave me hope that people’s lives can be changed… That we were all going through it together.” “Looking back and comparing them to my son is useful… he could do something like this one day.” Here are some quotes from the carer participants… The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Feedback from Carer Participants - Quotes “It brought us together about being human, particularly for carers as we always focus on the service users as being so different.” The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Feedback from Front-line Mental Health Staff Co-Facilitators Themes Expert by experience Added credibility / validation Increased group cohesion/engagement Role model Hope to participants That recovery is possible Reduced power differentials Participant/facilitator divide Potential impact on psychological well-being of SU co-facilitators Painful ‘passengers’ may arise Mental health crises We also asked the front-line mental health staff what their experiences of working alongside a SU co-facilitator Themes emerged that they found it beneficial on participants to have someone discus their experiences and that this fostered hope that recovery is possible. They also found that the involvement of SU co-facilitators improved engagement and group cohesion and that it reduced the divide between facilitators and participants However, many mental health staff were concerned about the potential impact on SU-facilitators if something difficult arises in the workshops or if they mental health crises arise. (This was addressed in groups supervision and pre- post-session debrief) The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Feedback From SU Co-Facilitators Finally, we interviewed the SU co-facilitators themselves about their experiences of the recruitment and training process as well as co-facilitation of the workshops We taped these interviews and will play back some extracts from them. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Feedback from SU Co-Facilitators - Themes Universality Felt equal with other co-facilitators Other facilitators are human (fallible) Personal use of ACT skills Promoting own recovery Learning by example ACT skills modeled by facilitators Personal growth Confidence New skills Here are some themes that emerged… Many of them reported that they felt like equals with the other facilitators in the workshops Most reported that they have been able to use the skills taught in the workshops to promote their own recovery from mental illness Many of them reported that their involvement in the ACT project has been a journey within itself The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

SU A Quote “One of the things that stood out for me the most was the um, sticky labels exercise, I remember, you know, looking the other therapists and being sort of surprised that other people had, you know, issues that, you know there’s kind of the assumption all the time that therapists and people in this industry, sort of, they’re perfectly fine and they don’t have any hang-ups and that was a real eye-opener and actually very helpful to see.”    Here are some extracts from interviews with the SU co-facilitators The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

SU D Quote 1 “it was probably the first time I felt a proper equal to the professionals, erm, which is, you know, not a bad thing. So I thought it was really well done, it was kind of a good balance of kind of theory and practice.” The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

SU D Quote 2 “The bus metaphor, was quite helpful, for example if you’re a voice hearer, you’re not giving the voices more power that they have actually, not assuming they have the power and even negative thinking, or issues around self worth – those are just passengers, they’re not, it’s not truth... Yeah, you don’t remember that all the time, but when you do remember it it’s helpful. And the exercise with the clipboard, pushing or it covering you up, that was  quite good, that was very powerful exercise ". The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

SU G quote 1 “Um absolutely, there’s a thing called Passengers on the bus, it’s a metaphor, and um yeah I still kind of use it today, I find it quite, very useful, and I like the whole kind of concept for our life you know, we pick up these thoughts, feelings and stuff and um, it can be a friend or foe, you know what I mean, and um the fact, I like the actual thing where, you know, you can’t actually eradicate them, and it’s futile when you try to, it’s actually painful when you try to, but when you work with them, you know, accept that they’re on board, and work with them, I seem to sort of get more things done….”.   “Especially with the passengers on the bus thing, so we’d come back and we’d feedback on, you know, what’s been going on with us since the last time we met, and in that I would mention, you know, um, for instance you know I’m an addict, I’ve been clean for 5 years and I’d mention that and how I deal with that today, the things that are useful and what kind of passengers are, you know what sort of passengers that conjures up. And I think it helped people to open up a bit and get some identification, to feel a bit of similarity with each other”  The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

SU C Quote 1 “it was also nice to be working with another therapist where they were very honest about their own worries regarding sticking to the script, you know, sticking to the ACT principles um, and not trying to problem-solve with the client, that was actually nice to have that level of um, openness, and yeh I found it enjoyable.  The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

SU C Quote 2 “I found it actually quite, er interesting, to see how the therapists I worked with were willing to make themselves vulnerable. They were willing to allow themselves into it, which is very um, uncommon in conventional therapeutic space, and I’ve had lots of experience in therapy space where the therapist tries not to do that, tries to remain detached, disconnected almost. Um, I found that really interesting”.   The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

SU C Quote 3 “My self image has changed… I see myself differently, erm some of the stigma that I experienced which I internalized um, has, is no longer impacting on me the way it was before. I think that’s a direct consequence of the ACT training…” “I don’t want to go into too many details, but It’s also allowed me to tackle stuff that in the past I left to one side, emotional stuff, which I would never have been able to start to confront: I think that’s the wrong word, I mean at least to approach, which only came back as a direct consequence of what I learnt in the ACT”. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Reflections Finally we are going to discuss practical issues and reflections of involving Service User co-facilitators in ACT workshops The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Practical Issues Needing to realistically adapt to accommodate for SU consultants Printing out worksheets/manual Memory issues, Anxiety in groups/mental health issues, Time keeping Preparation for sessions Disclosure of SU experience Need for ‘careful’ recruitment SU co-facilitators Extra training and debriefing recommended We found that we did have to accommodate more for the SU consultants for practical issues (i.e. printing stuff out) as well as other issues such as performance anxiety, mental health issues etc. Rather than just have a service user involved for tokenistic reasons, we wanted the facilitators to participate fully in the workshops. However we found that whilst some service users were very professional and appeared to take the role seriously, others would sometimes turn up late for debriefing and had not prepared the exercises they were going to facilitate. This was despite planning a week in advance on what to present. The issue of disclosing lived experience of mental health problems did arise and we found that some SUs were more comfortable than others in sharing their experiences, which we actively encouraged. We had to respect people’s choices not to disclose. Maybe this is something we can elaborate more on when recruiting in the future. As you will have seen, when people did share their experiences, this was found to be extremely helpful. We have learnt that there is a need for careful recruitment of co-facilitators to ensure that people are able to participate fully in the workshops. We have also found that a day’s training and providing a detailed manual is not sufficient to fully train people to facilitate the exercises and remain ACT consistent The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Reflections Pros and cons of Service User involvement Feedback from participants and Service User co-facilitators was very positive Increased pressure on lead facilitator to remain ACT consistent Balance between coaching, supporting and teaching Difficult task to step into We recommend identifying specific exercises that can be facilitated Extra training and experience required Stepped model of running further groups with increased responsibilities once they have observed lead facilitator model exercises In all the feedback from participants and facilitators has been that having a service user co-facilitator is beneficial. However, it highlights that facilitating ACT therapy for people with limited ACT training and knowledge is a difficult task for co-facilitators to learn and be effective (this refers to both frontline mental health staff and service user co-facilitators). We found it was a hard task for people to step in and do and that the lead facilitators faced a tricky balance between coaching, training, supporting if in crisis as well as sticking to the ACT model, which was a challenge at times So we would recommend that SU co-facilitators focus on facilitating specific tasks/exercises such as reading out a mindfulness exercise (but still with reminding and coaching) We have found that training would need to be increased. The model we now know is more stepped. If the SU co-facilitators want more of a role they could do a second set of groups once they’ve seen the exercises modelled by the lead facilitator The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

Questions/ Comments That’s the end of our presentation... Any comments/questions The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

The ACT for Recovery Project is generously funded by The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

South London and Maudsley NHS Foundation Trust Contact Details Dr Emma O’Donoghue Senior Clinical Psychologist / Study Coordinator – ACT for Recovery Project South London and Maudsley NHS Foundation Trust Emma.ODonoghue@slam.nhs.uk Emma.O’Donoghue@kcl.ac.uk The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)