SLaM Presentation

1
The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Dr Emma ODonoghue Senior Clinical Psychologist
/ Study Co-ordinator Lucy Butler - Research
Assistant South London and Maudsley NHS
Foundation Trust
2
With thanks to the ACT for Recovery Team (ACTfR)

• Emma ODonoghue
• 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)
3
Overview of Talk

• ACT for Recovery
• Rationale for study
• Design of study
• Role of Service User Co-facilitators
• Findings from workshop participants
• Findings from facilitators or ACT therapists
• Reflections

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
4
SLaM Boroughs Lambeth Southwark Croydon Lewisham
The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
5
Demographics of Lambeth

• Two Promoting Recovery teams serving borough of
  283,000
• Shared caseload of almost 2,000 approx. 30
  new/week
• High population density
• 5th most deprived borough in London
• Diverse community fewer than half self-report
  white British ethnicity
• Very high psychosis incidence, high substance
  misuse, high levels of forensic history
• Estimated 1,500 psychosis carers

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
6
Promoting Recovery Services

• Secondary care services provide
• Care co-ordination for clients who have severe
  and enduring psychosis
• Interventions for people with complex needs who
  have difficulty engaging with services and often
  require repeat hospital admissions
• Aim to support service users for a maximum of two
  years to support a return to Primary Care
• Difficulties in discharging back to primary care
  services
• GPs report anxiety and feel unprepared and
  untrained to manage the care of discharged
  clients

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
7
Promoting Recovery Services

• Over three quarters of people with psychosis are
  able to experience recovery to some degree.
• Personal recovery is defined as resuming, or
  finding new, individually valued, meaningful and
  rewarding activities and roles, irrespective of
  symptomatic improvement (Anthony, 1993).

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
8
Recovery Principle The ACT Approach
Finding and maintaining hope Hope is an active stance we can take. Feelings may come and go out hopeful actions are a way we can change our world.
Encouraging self-management Our actions and choices can be judged by whether they are taking us in the direction of our values, rather than whether they are right, make sense or look cool. Learning from experience.
The re-establishment of a positive identity Encourages contact with self as awareness, noticing the process of how our minds create stories about us. Instead of being entangled in the minds judgements, we observe whether they are useful for our chosen life directions.
Finding meaning in life Life's pain can be dignified if it is part of doing the things that are important to us. Through acting on personal values, contact with meaning is increased.
Taking responsibility for ones life We help people to be response-able to act on their values rather than their fear, through developing an open, compassionate stance toward their own experiences themselves.
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National Institute for Health and Clinical
Excellence (NICE) Recommendations

• Cognitive Behavioural Therapy (CBTp) (16
  weekly/fortnightly
• sessions) offered to
• everybody with psychosis
• Family Intervention (FIp) (10 sessions over
  3-12 months) to everybody with a caregiver

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
10
ACT for Recovery Study

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
11
Aims of Study

• 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 Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
12
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 Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
13
Study Design

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
14
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 Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
15
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 Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
16
Participants

• Over 2013, we will recruit
• 48 service user participants/clients (with
  established psychosis)
• 48 caregiver participants
• Facilitators
• 16 service user co-facilitators
• 16 frontline mental health staff co-facilitators

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
17

• Role of Service User Co-Facilitators

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
18
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

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
19
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 SLaMs Recovery College

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
20
Recruitment

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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

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
22
Feedback on SU Involvement

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
23
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

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
24
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.

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
25
Feedback from Client Participants - Quotes

• She understood as shes been through it
• I didnt know they were a service user. It
  would have been better if they had spoken about
  this moreIt could have encouraged other people
  to be involved in the project.

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
26
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

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
27
Feedback from Carer Participants - Quotes

• I found it useful. It gave me hope that peoples
  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.

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
28
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)
29

• 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

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
30
Feedback From SU Co-Facilitators

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
31
Feedback from SU 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

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
32
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
  theres kind
• of the assumption all the time that therapists
  and people in
• this industry, sort of, theyre perfectly fine
  and they dont
• have any hang-ups and that was a real eye-opener
  and
• actually very helpful to see.   

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
33
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)
34
SU D Quote 2

• The bus metaphor, was quite helpful, for example
  if youre
• a voice hearer, youre 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, theyre not, its not
  truth. Yeah,
• you dont remember that all the time, but when
  you do
• remember it its 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)
35
SU G quote 1

• Um absolutely, theres a thing called Passengers
  on the bus, its 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 cant actually eradicate them, and
  its futile when you try to, its actually
• painful when you try to, but when you work with
  them, you know, accept that theyre on
• board, and work with them, I seem to sort of get
  more things done..  
• Especially with the passengers on the bus thing,
  so wed come back and wed feedback
• on, you know, whats been going on with us since
  the last time we met, and in that I
• would mention, you know, um, for instance you
  know Im an addict, Ive been clean for 5
• years and Id 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)
36
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)
37
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 Ive 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)
38
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 thats a direct
  consequence
• of the ACT training
• I dont want to go into too many details, but
  Its 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 thats the
  wrong
• word, I mean at least to approach.

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
39
Reflections

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
40
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

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
41
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

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
42

• Questions/
• Comments

The Role of Service User Co-facilitators in
Delivering ACT for Recovery Workshops
Psychosis Clinical Academic
Group (CAG)
43

• 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)
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Contact Details

• Dr Emma ODonoghue
• Senior Clinical Psychologist / Study Coordinator
  ACT for Recovery Project
• South London and Maudsley NHS Foundation Trust
• Emma.ODonoghue_at_slam.nhs.uk
• Emma.ODonoghue_at_kcl.ac.uk

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