Presented to SRN/BSA Sociology of Mental Health Study Group seminar series Presented by Steve Gillard & Kati Turner

1. ‘Does who we are make a difference to the research that we do?’Telling stories about the experiences of patients detained under the Mental Health ActRohan Borschmann, Mary Chambers, Steve Gillard, Norman Goodrich-Purnell, Kath Lovell, Kati Turner Presented to SRN/BSA Sociology of Mental Health Study Group seminar series Presented by Steve Gillard & Kati Turner 6 April 2009

2. BackgroundWhy did we study the ‘lived experience of detained patients’? • The Trust wanted to better understand the experiences of patients detained under the Mental Health Act on psychiatric inpatient wards • The Trust Board launched a two year ‘patient experience’ programme, including funding for this research project • In-depth qualitative interviews to explore experiences of sectioning, control & restraint, rapid tranquilisation and seclusion • Findings from interviews used to develop nurse training workshops

3. How did we study lived experience of detained patients? • Experiences of detention would best be understood if people who had used mental health services were key members of the research team: • Three Service User Researchers • Nurse Researcher • Two Health Services Researchers • Service User Researchers trained and enabled to be involved in all aspects of study design, data collection, analysis & dissemination • ‘Study within a study’: • ‘Does who we are make a difference to the research that we do?’

4. ‘Study within a study’:The impact of SURs on the research findings • So, what difference does SUR involvement make? • Previous study (‘stakeholder engagement in change’) suggested that: • Service User Researchers might ask different follow-up questions when carrying out qualitative interviews • Service User Researchers might identify different things as important when analysing interviews • To test this we did a ‘secondary analysis’ of interview transcripts from the main study…

5. Do we interview differently? • We looked at 10 interview transcripts: • 5 led by the Health Services Researcher • 5 led by a Service User Researcher • Follow-up questions were categorised into 9 themes and the number of questions asked in each theme were counted • We compared the proportion of total questions asked in each theme by Health Service and Service User Researchers

6. …So what did we find? Most of the time we asked the same types of questions: • Environment • Staff relationship • Service & treatment • Life events & mental health • Alternative to coercion • Procedures Indicated that all members of the team were trained and interviewed to the same high professional standard

7. However… Service User Researchers were much more likely to ask about people’s experiences and feelings: • ‘How did it feel when you were changed from being a voluntary patient to being sectioned?’ • ‘When you said you were restrained, you said that it felt frightening?’ • ‘And was that a way of expressing some anger?’

8. And … The Health Services Researcher was more likely to ask questions from a medical or behavioural perspective: - ‘Do you know what it was they gave you…? Did it have any effect on the side effects?’ • ‘But you haven’t been made to stay in your bedroom or anything, as a behavioural response?’

9. Did we analyse differently?A thematic content analysis… • All six members of the research team carried out a preliminary analysis of the same extracts from a sample of three interviews • Researchers gave a ‘code’ (a label) to anything they thought was interesting or important • Those codes were grouped by the whole team into 13 themes • Counted how many times each researcher used each theme in the preliminary analysis • Compared how many times Service User Researchers used each theme with the other research team members

10. … and? While some of the coding was similar, Service User Researchers were more likely to use these themes: • Background situation • Experiences of being sectioned • Violence & mental health • Effects of medication • Feelings about being detained • Alternatives to coercion

11. While other team members (Nursing Researcher, Health Services Researchers) were more likely to code as : • Communication with staff • Policies & procedures • Nurse education & training • ‘Playing the game’ • Patient insight

12. So that’s what the numbers said…… but what difference does that make to our findings? • We looked at the themes again and asked… • Were different Researchers telling ‘different stories’ about the lived experience of detained patients? • There were lots of views we shared, but… • We found that we did have very different perspectives on some important aspects of the detained patient experience.

13. The Service User Researchers’ story… • Focuses on the impact of the experience of detained care on the individual rather than the processes of detention; • Describes experiences of violence and separation from the world outside: “It was just such unnecessary pain ….. I’ve never, ever felt such excruciating pain before ….. it felt like my wrist was going to break.” “It’s still a little bit of a barbaric system really, where people can sort of rough you up and bung you on the floor.” “I didn’t like the place because it’s too violent for me. I don’t want to watch fights all day.”

14. The Service User Researchers’ story… • Patients spoke of feeling like ‘dejected specimens’ and of being ‘plucked from society’; • And of feeling like they were sentenced to indefinite imprisonment: “One, I think you get more freedom in an open prison than you get on a section and two, is that the dignity is gone once you’re in the mental health system. You definitely become a dejected specimen of what you formerly were.” “You’re sort of plucked out and suspended in time out of society and society doesn’t work like that, you know? You couldn’t describe it as a progressive time at all.”

15. The Health Services Researchers’ story… • Focuses on concepts that explain the detained patient experience: • ‘playing the game’ • ‘patient insight’ • ‘imbalance of power’: “I think it’s too much power. I think power comes in that the police are called and the nurses restrain you and it seems to me as though you’re very much at the bottom of the pile”. “’You’re the nurse, I’m the patient, you get on with your job and I’ll get on with mine’, you know?”

16. The Health Services Researchers’ story… • Describes the newly admitted, unwell patient resisting the injustice of detention and being subject to coercion as a result: “I’m pretty sure I could refuse medication, but I just wouldn’t get out of here.” “Yeah, definitely, don’t rock the boat; all the time, a hundred percent. When you wake up in the morning, don’t rock the boat! When you go sleep at night don’t rock the boat! The nurses are in charge; you put a step out of line and they give you more medication ….. Nobody wants more medication.”

17. The Health Services Researchers’ story… • Over time patients work out the ‘rules of the game’ and become compliant with treatment: “You play the game, don’t you? If you don’t play the game, you don’t get what you want.” “”If you don’t take your medication or if you don’t tidy your bed space, the duty team will come.” • They are then rewarded with an end to coercion and positive relationships with staff: “Play the game and get on with it. You know what I mean? You might even end up having a bit of a laugh doing it, if it’s a nice afternoon and everybody’s getting on well.” “A lot of them are nice. A lot of them will sit down with you and have a laugh over Eastenders or something.”

18. The Nursing Researcher’s story… • Focuses on staff attitudes and implementation of procedure; • Describes staff viewing the new patient as childlike and dangerous: “They treat you like a child, you know? One thing that needs to change is the way that they feel that they’re higher than you and that they have duty of care over you, because most of them don’t even care.” • Patients’ attempts to have some control over their treatment are discounted and treatment decisions are kept from patients;

19. The Nursing Researcher’s story… • This staff attitude results in a lack of both interpersonal and formal therapeutic engagement: “Sometimes at breakfast here a nurse won’t say good morning, you know? They just sort of stare you up and down. Some of them are very human but the impression they give is that they’re too busy to do it. That’s the impression.” “They sort of sat and spoke to me, but after a while of them doing it they just didn’t both talking to me anymore.” “It’s very difficult to dispute because we’re in the dark as to what their activities are. I mean, I wonder what the clipboard and writing down ‘obs’ is, you know what I mean?”

20. The Nursing Researcher’s story… • Because of the absence of meaningful relationships between patients and staff, coercive practices become the first response to tension on the ward: “I was restrained once without being asked if I’d take the tablets. They just felt that I was so high that I wouldn’t have taken the tablets and it was an occasion where I thought ‘well, I would’ve just taken the tablets if they’d have asked me to’”. “No, they don’t try things like that at all. They just get the team out and that’s it.”

21. But could we tell a ‘shared story’ that included the things we saw differently as well as what we agreed on?

22. The shared story (the whole story?)… • Some staff view the new detained patient as dangerous, a lack of engagement leading to use of coercion as the treatment of choice; • Reflects a lack of staff training and awareness around engagement at the difficult time of admission; • Results in a cycle of violence; • Continues until the patient is ‘broken’ and becomes treatment compliant (‘plays the game’); • Patient is then rewarded with a friendly relationship with staff; • The cost of that process for the patient is a damaged sense of self, as well as a damaged relationship with mental health services.

23. So did who we are make a difference?Relationships within the research team • The shared story we told brought together some very different views • Relationships in the research team, between different researchers, enabled us to explore and include those differences • For example, the research relationship between service user and nursing researchers acted as a ‘bridge’ between the different perspectives • So different perspectives – e.g. experiences of violence and nurse training issues – are not polarised, but are understood through dialogue in the research team • Allows research findings to ‘speak to’ both nursing staff and patients

24. Making a bigger difference: Telling our story to the wider world • Story told to nursing staff through • 4 day training workshop in the Trust (very positive evaluation and feedback after a number of months – a lasting impression) • National and International Royal College of Nursing conferences • Story told to service users and patients through conference presentations and workshops (National, South London, and East Anglia Mental Health Research Network conferences) • Story told to researchers interested in doing good collaborative research (INVOnet workshop, MRHN conferences) • Methodology used in a national study of Self Care in Mental Health