Health policy guidelines state that people who use mental health services should be involved in the development of the services they receive (Department of Health, 1999). Examples of good practice in this respect are reported from staff recruitment (Reference Diamond, Parkin, Morris, Bettinis and BettesworthDiamond et al, 2003), research (Reference Trivedi and WykesTrivedi & Wykes, 2002) and training (Reference RepperRepper, 2000; Reference HarperHarper, 2003). However, support for user involvement is not universal (Reference SummersSummers, 2003; Reference SoffeSoffe, 2004) and, most significantly, there is considerable confusion about what is meant by involvement. The following case study will address these issues by: (a) adding to the evidence regarding the successful involvement of service users in training; and (b) clarifying the process by which involvement can be safely achieved.
Description of the training
‘Psychosis Revisited’ is a 2-day workshop (Reference Basset, Cooke and ReadBasset et al, 2003). Based upon the British Psychological Society report (2000) Understanding Mental Illness, the workshop encourages mental health workers to reconsider psychosis and psychotic experiences with an open mind.
A draft trainers’ manual was written in April 2002 and mental health workers within West Sussex Health and Social Care NHS Trust were invited to facilitate pilot workshops. The first of two pilot workshops was facilitated by a clinical psychologist (M.H.) and an occupational therapist (A.B.), and delivered to a community mental health/assertive outreach team consisting of approximately 20 workers, the majority of whom had received professional training (community psychiatric nurses, approved social workers, clinical psychologists and a consultant psychiatrist).
The programme for the workshop is shown in Box 1.
The particular session that will form the focus of this case study was entitled Service User Perspectives (for a full description of the pilot 2-day workshop see Reference Hayward and BassetHayward & Basset, 2002; Reference CookeCooke, 2003).
Why involve service users?
The session on service user perspectives was scheduled for 1.5 h and the manual offered the choice of either working in small groups on pre-prepared narratives written by service users or involving service users directly. The latter option was chosen for the reasons which will be outlined from the perspectives of the different facilitators.
Box 1. Programme for workshop ‘Psychosis Revisited’
Day1: frameworks for understanding
This day allows participants to take a step back and consider psychosis with an open mind.
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• Introduction and the contested nature of mental health
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• Personal/professional/team perspectives
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• Service user perspectives
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• Understanding, causes, cultural context, formulations
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• Shifting paradigms and raising hope
Day 2: approaches and interventions
This day focuses on interventions and approaches and culminates in an action plan.
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• Introduction and reflections
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• Hope, recovery and fighting discrimination
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• Psychological interventions
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• Other approaches – medication, self-management and self-help, complementary therapies, work, social support
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• Action plan – strategies for putting the action plan into practice
Trainers
Being taught by service users can be an extremely powerful experience. There is something about the honesty that can cut through the defensive practice and political correctness that can render us, as mental health professionals, so impotent. We considered the workshop could only be credible if its broader aims were directly endorsed by people for whom psychotic experiences had been a reality.
Service user (S.W.)
‘I wanted to offer some support and encouragement to mental health workers who may be more accustomed to criticism. My experience of receiving services has been positive, even if I felt like a fraud. I wanted to identify the good bits of my experience and to ensure that those aspects of care continue to be offered. I also wanted to take the opportunity that had been created by the hard work of those who had organised the workshop’.
Service user (M.G.)
‘I wanted to let mental health workers know the profound effect they can have on the lives of people they care for. How poor and disrespectful attitudes can have a longstanding and negative influence upon people's lives. I also knew that I needed to open the can of worms and start dealing with the issues that surrounded my traumatic admission to a mental health hospital several years ago. I felt that sharing my experiences would help me to face them, deal with feelings and enable me to move forward’.
The training officer (Graham Tooth) responsible for the pilot workshops had existing links with Clients and Professionals in Training and Learning (CAPITAL), a service user organisation active within training and service development in West Sussex. M.H. invited CAPITAL to facilitate the service user session and assume responsibility for it thereafter.
How was it done?
As an organisation CAPITAL prides itself on the training and preparation of its members for public speaking. Creating a space that is ‘safe enough’ to facilitate participation is also a priority. Within the workshop, the participation of members was made possible and safe enough by the following measures:
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1. The establishment of a group agreement that all information disclosed within the session would remain within the room.
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2. The two service users were interviewed by the coordinator of CAPITAL (Ann Beales), herself a user of services. The questions listed in Box 2 were prepared prior to the session and each question was put to each of the service users in turn.
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3. Workshop participants were asked to remain silent during the interviews. Upon their conclusion, participants were invited to write questions, addressed to either or both of the users, as adhesive notes. During the subsequent break, the questions were vetted by the service users and grouped. This allowed questions which may have caused distress to be left unanswered. Following the break, the questions were put to the service users by the coordinator.
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4. An additional safety measure related to the anxiety of one of the service users who had not previously spoken of her experiences in public. In order to keep her anxiety at a manageable level, she angled her chair to a degree that enabled her to focus her attention exclusively upon the coordinator as she asked the questions.
Outcome
The interviewers were conducted in a respectful silence, as the participants collectively acknowledged that they were witnessing something unusual. There was a sense of being caught in the power of a process that acknowledged the ability of individuals to overcome considerable adversity, and to endure further anxiety as they spoke publicly about their experiences in order to positively influence the care received by others. However, this power was not attributed solely to the very raw, traumatic and shocking experiences that were recounted by M.G. Humour played an important part in the session and the more positive experiences of S.W. provided a necessary balance. A focus upon recovery was also important in engendering hope, as each service user spoke of building lives that were of a better quality, albeit with the occasional setback, than before the onset of their psychotic experiences.
Box 2. Questions for service users
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• When did you first realise that you were ill?
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• What assisted your recovery?
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• What hindered your recovery?
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• How were your family and friends educated about your illness, and were they given any guidance about the possible process of your recovery?
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• On discharge from hospital, what support did you receive, if any?
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• What would you have changed to have made your experience more positive?
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• How do you live with your illness now?
Reflections on involvement
Reflections from M.G.
‘I wanted to get a little bit of confidence back and to challenge myself. I felt I had a bit of power to influence how the future of mental health services might be.’
‘It has really helped me grab hold of my problems and deal with them. Each time I have presented it has become easier. It's even become enjoyable. I didn't think I’d ever say that.’
‘I’ve had some lovely feedback. People coming up to me and saying “Can I hug you” and “Can I shake your hand?” One girl wrote a note saying “you’re wonderful for what you’ve been through and the quality of life you’ve got now – keep going”. It is really good for me to get that’.
Reflections from the trainers
We expected to play a part in somehow protecting the service users from hostility that may have been aroused within participants as a consequence of a perceived attack upon their practice. However, we could not have been more wrong. Not only did the CAPITAL members demonstrate that they were well versed in looking after each other, the hostility, expressed as a sense of indignation, was directed towards the services that ‘cared’ for M.G. in such an abusive manner.
Reflections from the participants
An opportunity to evaluate the impact of the contributions of the service users was provided through whole group discussions at the beginning of day 2 of the workshop. Participants spoke of their sense of shock at the abuse experienced by M.G. How could such dehumanising practices still occur within modern mental health services? The outrage was channelled into a discussion of the value of user views and the need to support CAPITAL and similar organisations in their work. There was also reflection on the positive aspects of service provision highlighted by S.W. An acknowledgement that old practice was not synonymous with bad practice; that by throwing the baby out with the bath water, many service users who lacked the confidence to actively participate within the lives of their communities were being denied the opportunity to grow within the relative safety of more sheltered environments.
Conclusion
The involvement of service users in the workshop emphasised the significance of the impact that user views can have on mental health workers. Moreover, lessons were learnt regarding the process by which involvement can be made ‘safe enough’, and the credibility that it can bring to a training event. Benefits were also derived by the service users, one of whom spoke of gains in terms of increased confidence and the possibility of influencing the practice of workers. These benefits were passed onto the authors of the workshop manual, who consequently changed the wording of the document to insist upon, rather than suggest, the involvement of service users. A further point was the balance of positive and negative experiences of care. Without these complementary perspectives the session would have been in danger of either alienating participants (by being too negative) or glossing over the inadequacies of services (by being too positive).
Five workshops later, and despite the modification of some of the workshop sessions/exercises according to local need, and the introduction of new trainers, the sessions on service user perspectives have remained unchanged. Most significantly, this applies to their impact, which has continued to be profound with each new audience.
The workshop manual was published in April 2003 and future plans of the training group include the embedding of ‘Psychosis Revisited’ within established programmes of training for nurses, occupational therapists, trainee clinical psychologists and workers without a professional training (GNVQ). In response to feedback, a 1-day booster session is also being developed. This workshop will focus upon the development of conversations with individuals about their psychotic experiences, and will include significant contributions from CAPITAL members throughout the day.
Declaration of interest
A version of this paper was originally written for and appears on the website of Mental Health in Higher Education (http://www.mhhe.ltsn.ac.uk), a project funded by the Learning and Training Support Network.
Acknowledgements
We thank Graham Tooth (training officer) and Ann Beales (coordinator, CAPITAL) for their help in creating this learning opportunity.
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