Understanding personality disorders and recovery

Understanding personality
Knowing what it means to care:
disorders and recovery
Towards the development of a
National Carersʼ Strategy for
Personality Disorder
2011
2009
Kati Turner
Steve Gillard
Alexia Demetriou
Kati Turner
Ian Griggs
Marion Neffgen
Steve Gillard
Report commissioned by:
Borderline UK, now part of Emergence
!
With the support of the
!
Department of Health National Personality Disorder Programme
Research commissioned by
Emergence
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ACKNOWLEDGEMENTS The authors of this report are: Kati Turner: Service User Researcher, Department of Population Health Sciences and Education, St George's, University of London; Chair, Emergence Dr Marion Neffgen: Clinical Researcher and Speciality Trainee in Psychiatry, South West London & St George's Mental Health NHS Trust Dr Steve Gillard: Health Services Researcher, Department of Population Health Sciences and Education, St George's, University of London Thanks to: Kath Lovell: Managing Director, Emergence Dr Steve Miller: Consultant Psychiatrist in Psychotherapy and Clinical Lead for Personality Disorder Service, South West London & St George's Mental Health NHS Trust for their encouragement and support of this project. We would also like to give our heartfelt thanks to the six people who took part in this research and for the time and emotional commitment they gave to the project. CONTENTS 1. Background 1 Aims 3 Research methods 3 Findings 8 4.1 The lived experience of personality disorders 9 4.2 Personality disorders and recovery 21 4.3 Treatment and support 42 4.4 The interview experience 62 Reflections on the research process 65 Conclusions and recommendations 68 References 72 74 2. 3. 4. 5. 6. 7. 8. Appendix: The interview schedule Understanding personality disorders and recovery 1. BACKGROUND 1.1 The concept of recovery in mental health Recovery-­‐orientated approaches to mental health care have their origins in the mental health service consumer and survivor movements (for example: Wellness Recovery Action Planning, Copeland 1997; Self-­‐Management approaches to living with Schizophrenia, Martyn 2003). These approaches offer an alternative to clinical models of recovery that focus on cure from disease and reduction in symptoms, suggesting instead that recovery is about a broader picture of living well with mental health issues (Deegan 1996). Understandings of recovery and mental health have mostly been articulated through a growing body of narrative-­‐based research recounting individuals’ stories of their personal recovery journeys (Brown & Kandirikirira 2006; Rethink 2010). These accounts have offered a number of key components that characterise the concept of recovery, including: finding and maintaining hope; the re-­‐establishment of a positive identity; finding meaning in life; taking responsibility for one’s life (Andresen et al 2003). From the 1990s recovery has been advocated as a set of principles upon which mental health services should be organised (Anthony 1993), and from the turn of the millennium UK health policy began to suggest that mental health service providers adopt a recovery approach to the delivery of services (DH 2001). Ten years on the new UK mental health strategy – No Health without Mental Health (DH 2011) – stipulates recovery as an outcome against which the performance of provider organisations will be measured, defining recovery as people’s ‘greater ability to manage their own lives, stronger social relationships, a greater sense of purpose, the skills they need for living and working, improved chances in education, better employment rates and a suitable and stable place to live’. In response to this policy agenda, mental health NHS Trusts across England have introduced a range of recovery-­‐based initiatives, including recovery training for staff, recovery plans for service users, recovery-­‐focused psycho-­‐education groups, new recovery-­‐based roles in the workforce and new recovery teams delivering mental health services. However, it might be argued that there is a tension inherent in stipulating a recovery approach to the organisation of services – often referred to as ‘the recovery model’ – where core to the concept of recovery is the idea that understandings of recovery are highly individualised. New research is suggesting that, while the broad principles of recovery might have wide resonance, factors that are specific to particular mental health issues and their treatment contexts appear to 1 affect the interpretation and emphasis of this generic concept of recovery (Turton et al 2011). 1.2 Personality disorders and recovery The language of recovery is largely absent from the research literature on personality disorders. This might, in part, be due to an historical set of assumptions about the untreatability of personality disorders (Lewis & Appleby 1988; Tyrer 2001). However, a strong, parallel tradition has also existed, for example, in the Therapeutic Community movement (eg: Dickey & Ware 2008) where it has been insisted since the 1950s that personality disorders are treatable and that good outcomes for individuals are possible. More recent research has indicated both that a medical-­‐
type recovery (symptom alleviation) from personality disorders can be observed over time (Zanarini et al 2010), and that long-­‐term treatment benefits can be achieved where appropriate treatments are developed (Bateman & Fonagy 2008). The increasing acceptance of the treatability of personality disorders has led to the incorporation of understandings of recovery from mainstream mental health into approaches to delivering services for personality disorders. The recent ‘capabilities framework’ for the treatment of personality disorders (NIMHE 2003) indicates that staff working in personality disorders need to develop skills – such as reflective practice and treatment alliance – to support people experiencing personality disorders with their recovery. However, the same document acknowledges that the concept is borrowed from mainstream mental health and does not attempt to articulate how recovery might be understood in the context of personality disorders. Similarly, reference to recovery in NICE guidelines on the treatment of Borderline Personality Disorder (NICE 2009) is limited to the possibility of recovery without articulating what that might mean for the individual. Efforts to conceptualise understandings of recovery in the context of personality disorders are in their early stages. The service user/survivor-­‐led organisation Emergence offers the concept of emergence as one that perhaps has wide relevance, noting that ‘many of us ... who have a lived experience of personality disorders have differing views about the idea of recovery but we concur that we feel that we have ‘emerged’ rather than recovered’ (www.emergenceplus.org.uk). The training programme offered as part of the Department of Health and Ministry of Justice sponsored National Knowledge and Understanding Framework on Personality Disorder also sets out to ‘critically reflect’ upon the relevance of the concept of recovery for people using personality disorders services (www.personalitydisorder.org.uk). 2 1.3 This research project This research project has been commissioned and funded by Emergence as part of a process of trying to understand whether and how understandings of recovery are relevant and useful for people with a lived experience of personality disorders, and whether those understandings are different from concepts of recovery developed in mainstream mental health. The literature briefly discussed above suggests that understandings of recovery that have their origins in mainstream mental health might be currently being used to inform the development of personality disorders services. It is important that the future development of personality disorders services is grounded by the insight of people with a lived experience of personality disorders. 2. AIMS This research project aims: To explore understandings of recovery from the perspective of people with a lived experience of personality disorders; To explore the extent to which understandings of recovery can usefully inform the development of personality disorders services. 3. RESEARCH METHODS 3.1 Our approach to the research This research project is about developing understandings of how individual people might experience recovery in the context of their everyday lives. To do this we needed to take an approach to research that would enable us to elicit the depth and complexity of people’s experiences. When we were approached by Emergence to undertake this piece of work we had recently completed -­‐ with a number of other researchers -­‐ a project that explored how the concept of recovery was understood by people using a range of different specialist mental health services: for eating disorders; dual diagnosis of mental health, and drug and alcohol problems; forensic mental health services. That project (Turton et al 2011) had used in-­‐depth, qualitative interviews with people using specialist services and was very successful in encouraging people to talk in detail about their experiences and opinions. The interview had three parts to it: the first part invited people to explore in their own terms their understandings and experiences of recovery and how the services they used had supported their 3 recovery; the second part was shorter and sought to check whether the concept of recovery as articulated in the mainstream narrative research literature (referred to above) was relevant to their personal experiences. A short, final section of the interview explored interviewees’ experiences of the interview process. We decided to use the same interview schedule in this study. The interview schedule can be found in the Appendix at the end of this report. 3.2 The research team The inclusion of both people who used mental health services and people who worked in mental health services was core to the approach we adopted in the research project referred to above. We felt that people with personal experiences of using services would be well placed to elicit and interpret the experiences and opinions of their peers. We also felt that, because we wanted to understand recovery in a number of service delivery settings, the insight of people working in those services would also usefully inform the research. In the earlier project a ‘service user researcher’ and ‘clinical researchers’ undertook all the interviews in pairs, as well as being involved in analysing the interviews. Because of the success of that approach we again adopted and further developed the same approach here. Our team for this project comprised: Kati Turner, an experienced service user researcher with a lived experience of personality disorder and of using a range of personality disorders services; Marion Neffgen, a trainee psychiatrist with specialist experience of working in personality disorders services; Steve Gillard, a health services researcher with extensive experience of supporting service user involvement in research. Kati Turner was also chair of Emergence at the time of this research project. 3.3 Carrying out the interviews We interviewed six people using a specialist personality disorders service in a London mental health NHS Trust. The Trust had a high profile recovery policy with all staff receiving mandatory recovery training and all service users having access to personal recovery plans. The specialist service provided open access peer support groups for people living in the community who either had a diagnosis of personality disorder/s or who identified with the behaviours, thoughts and emotions associated with it. To ensure that there was variation in the people we interviewed we selected three men and three women attending three different groups in different parts of the Trust, half of whom had also used other specialist personality disorders services. Staff working in the personality disorders service initially approached potential interviewees on our behalf and, if they were interested in being part of the research, passed their contact details on to members of the research team. An informed 4 consent process was an important part of the recruitment of interviewees and the whole study was approved by an NHS Research Ethics Committee. Interviews were undertaken in a Trust location that the interviewee was familiar with by both the service user researcher and the clinical researcher. In half the interviews the service user researcher led on the first part of the interview exploring interviewees’ personal understandings and experiences of recovery, while the clinical researcher led on parts two and three. In the other three interviews the roles were reversed. The lead interviewer asked the majority of questions, beginning with the questions detailed on the interview schedule and then asking follow-­‐up questions to encourage interviewees to talk in more depth. The second interviewer was able to ask additional questions where they felt something the interviewer had said might be explored in more detail. We took this approach to ensure that the data we collected was not shaped predominantly by the priorities of either the service user researcher or clinical researcher. The interviews were digitally recorded and then transcribed verbatim by the interviewers. 3.4 Analysing the interviews When analysing the interviews we wanted to make sure that the views and interpretations of all members of the research team were represented in the analysis. We devised a thematic analysis process in a number of stages with members of the team sharing the tasks. We tried to make sure that the personal insights into personality disorders of the service user researcher and clinical researcher – who also had best knowledge of the interview data – informed key decisions in the analysis. The role of the health services researcher was to provide a more distanced perspective on the data and to help manage the analysis process. Team meetings were held throughout the process to monitor and guide progress. The process is most clearly illustrated in diagram 1 below: 5 Diagram 1: The analysis process Stage in the analysis process Preliminary coding of a sample section of different parts of different interviews Team involvement All researchers Meeting to generate a set of themes to analyse complete interviews All researchers Thematic analysis of the complete set of interviews Clinical and service user researchers Producing interpretive documents for each theme from individual researchers’ perspectives Clinical and service user researchers Producing joint interpretive documents for each theme All researchers Writing up research findings – analytical commentary and quotes from the interviews – for the report Led by the service user researcher 6 3.5 Writing the report As indicated above, the service user researcher led on writing up the main findings of the report, and also on the initial draft of the report’s conclusions. The health services researcher led on writing sections one to three and section five (reflections on the research process). All members of the team commented on, and made additions to drafts as they were developed. All our writing was guided by the many joint discussions we had had about the research as a team. 7 4. FINDINGS Our final themes Through the process of generating themes described above we produced a final set of sixteen themes. Fifteen of these we organised into three sections: The lived experience of personality disorders; Personality disorders and recovery; Treatment and support. A final single theme exploring interviewees’ experiences of being interviewed jointly by a service user researcher and a clinical researcher made up the fourth section: The interview experience. The organisation of these themes is illustrated in Table 1 below: Table 1: Our set of themes Section Theme 4.1 The lived experience of personality disorders 4.1.1 The internal world 4.1.2 The external world 4.1.3 Diagnosis 4.2 Personality disorders and recovery 4.2.1 Personal understandings of recovery 4.2.2 Acceptance 4.2.3 Positive feelings about recovery 4.2.4 Relationships and recovery 4.2.5 Recovery and society 4.2.6 Obstacles to recovery 4.2.7 Goals 4.3 Treatment and support 4.3.1 Medication 4.3.2 Specialist 4.3.3 Mainstream 4.3.4 Therapy 4.3.5 Support 4.4 The interview experience 4.4.1 Interview Developing a ‘narrative’ understanding of personality disorders and recovery During the analysis process we realised that our growing understanding of recovery was rooted in interviewees’ accounts of their lived experiences of personality disorders. It therefore made sense to us to develop a narrative which started with this lived experience and went on to describe personal journeys of recovery before focusing on interviewees’ experiences of treatment and support. We feel that 8 presenting our research in this way – rather than merely attempting to capture a definition of recovery – offers a more coherent and richer understanding of personality disorders and recovery. What we present below is therefore our narrative of personality disorders and recovery, produced jointly as a research team comprising clinical, academic and service user researchers, firmly grounded in the lived experiences of the people we interviewed. 4.1 The lived experience of personality disorders While our interview schedule did not focus explicitly on eliciting data on interviewees’ lived experiences of personality disorders, all of our interviewees did tell us about this in some depth. Because of the prominence of this data in interviewees’ accounts – and because it was clear that interviewees thought about recovery in the context of their lived experiences – we decided early in the analysis process that it would be meaningless to explore understandings of recovery without first articulating this lived experience. We present this data in three themes: The internal world (the relationship our interviewees had with themselves); The external world (the relationship they had with the outside world) and Diagnosis (interviewees’ experiences of being diagnosed and how this affected them). Starting with these themes allowed us to then interpret and situate the data about recovery within the context of these internal and external worlds, as well as the interaction between them. 4.1.1 The internal world Isolation and alienation Interviewees told us they very often experienced feelings of extreme isolation and alienation – both in relation to themselves (feeling dislocated and dissociated) and as a reaction to the outside world (see further discussion under The external world): ... and for thirteen years I’ve isolated myself … (Int 6) … I think people with pd, I think they can feel so isolated and alone … (Int 2) ... very isolated, extremely isolated … I couldn’t trust my own judgement, or anything like that … I get very detached. It’s like I’m sort of up here looking down and, what’s happened? ... (Int 5) People recognised that this sometimes self-­‐imposed isolation can be harmful, hamper well-­‐being and can lead to further feelings of alienation: … last weekend I had a bad weekend and that means I’m in bed all the time … when you’re like that you don’t want to do nothing, you don’t eat properly … (Int 6) 9 … I would sit in my flat for days on end, not really washing or brushing my teeth or anything and just eating mechanically ‘cos I’m supposed to eat … (Int 5) … way I see it is I isolate myself when I feel I have to, I’ll go mad if I don’t isolate myself and then when I isolate myself too long I feel like I am going mad anyway so I can’t work out how I can survive properly … (Int 1) Intense and polarised emotions Interviewees spoke about experiencing intense and polarised emotions and of the unpredictability and chaos that this can bring. Rapid changes in mood can range from extreme states of anxiety, depression, hyper-­‐sensitivity, suicidal or self-­‐harmful thoughts to psychotic, euphoric and manic-­‐like states, often with little, if any, connection between the two: … my moods do change cycle quite rapidly … so, I have psychotic episodes where I’m completely psychotic -­‐ luckily they’re quite infrequent -­‐ and I have very intense periods of depression … I either have no interest … or I become obsessed with something … (Int 4) … When I’m in a particular emotional state I don’t remember having any other state at all and it can be a difference of a day … the main thing really is that it is always changing … Yeah, full of anger and full of rage and nothing really gets through … I used to love ‘em ‘cos it was chaos! … Can’t deal with it no more … (Int 5) … because I used to think I had verbal diarrhoea … ‘cos I’d either be silent or when I started up it was almost like I was hysterical, I’d start talking and talking about everything in my head … (Int 1) These emotions seem to arrive quickly, often without obvious triggers or predictability: … it’s hard to judge when … it can change instantly how I’m feeling … I could be fine one minute and the next minute I would just go down, straight down, it’s almost like walking along this path and you’re not happy, you’re not normal, as happy as normal people are but you’re not really low down but as you’re walking along sometimes a trapdoor opens and you just fall through the trapdoor and you can’t get back up again … (Int 3) … I can wake up in the morning and I could just get out of bed and nothing’s happening and I’d go ‘right, bad day’ and that’d be it, bad day. You know, and that’s just … madness … (Int 2) 10 One interviewee told us they often thought in a very polarised, ‘black and white’ way: … this is where it’s sort of black and white thinking comes in, it’s not healthy or anything like that … (Int 5) An uncertain and vulnerable sense of self Interviewees spoke about experiencing varying levels of panic, anxiety, confusion, indecision, paralysis, fear, over-­‐reliance and dependence in their everyday life: … I can be incredibly clingy and dependent and very quickly come to rely entirely on other people and it just entrenches my difficulties and makes it harder to come back from the brink … (Int 4) … Well, I’m a very sort of scared person, very anxious, I panic at the slightest things sometimes … (Int 6) … influences that are bombarding me … cause me severe anxiety almost to the point of paralysis sometimes … (Int 3) People described feeling unsure who they were; of not knowing what is ‘normal’: … I find I have a very uncertain sense of self, so it’s hard to know, to have hope in yourself when you don’t have a clear idea of who you are … (Int 4) … I think that to the day that I drop dead, whenever that is, I will still be, I don’t know what normal is … (Int 1) Interviewees also talked about not knowing what was wrong with them and not believing in themselves or trusting their own judgement: … I didn’t know what was going on. I just knew it wasn’t right because my behaviour wasn’t right … I spent a lot of time wondering what was wrong with me, thinking why can’t I be happy or why can’t I go and get a job … everything was why and I had no answers to the whys … (Int 2) … I couldn’t trust my own judgement, or anything like that and sometimes I think about it and probably can’t trust my own judgement ... (Int 5) … I don’t know what it’s like to actually find myself experiencing meeting people, finding what I like, what I want to do, explore what I want to do in life, what job I want to do, how I want to conduct my life … and a lot of my time has been disengaged from who I really am … (Int 1) 11 Some people also described feeling that something was not right with their brain, that they were not functioning ‘normally’ and that they could not control their mind or switch it off: … There’s a lot of confusion in my head and I just get very confused, I find I can’t organise thoughts and in turn I can’t organise my life … I feel my brain doesn’t work properly, I’ve told psychiatrists and psychotherapists that I just have this feeling my brain doesn’t work properly, I don’t know what it is, it’s really bizarre … (Int 3) … But that’s my brain rejecting it, my brain is a thing on its own … I can take temazepam, it helps me sleep but will I sleep? My brain, it doesn’t switch off at night, it’s got its own trigger and it’s always bloody on … (Int 6) A negative and punitive relationship with the self Interviewees told us how negatively they viewed themselves and characterised this by describing feelings of self-­‐hatred, low self-­‐esteem and self-­‐criticism: … I think I have a very negative view of myself and hyper-­‐critical of myself … some of the characteristics and personality traits that I have are very unpleasant really, things that I don’t like about myself … (Int 4) … Yeah, I used to say that I had a brain that didn’t work and a body that wouldn’t die so I blamed myself, which I suppose is a bit mad, but that’s how it was … (Int 2) … feelings of complete inadequacy and self-­‐loathing, self-­‐hate and generally nothing positive … very self-­‐critical, just blame myself for everything, just feel that I let everybody down and … it all snowballs, doesn’t it? You know, I’m useless, I’m worthless ... (Int 3) Often, these self-­‐critical feelings can lead to self-­‐punishment: … I punish myself and I hurt … (Int 4) … I’d rather not have any praise because it’s sort of self-­‐harming in some way, you’d rather have someone swear at you or hit you rather than accept praise and this is what I’m like, you know. It’s easier to take pain … (Int 6) Extreme and self-­‐destructive behaviours People spoke about the consequences of experiencing the feelings described above: behaving in extreme ways which often carry a high risk of threat to life. These can be self-­‐inflicted and destructive such as abusing alcohol and drugs; self-­‐harm; overdosing on prescribed or unprescribed medication: 12 … my last serious attempt was last summer and I took 250 olanzapine and I stockpiled a whole lot of medication … was in intensive care for about five or six days … I didn’t realise but in the preceding twelve months I’d tried to kill myself twenty times … (Int 4) … most of my life at that time I was left feeling that I wasn’t going to survive, that I would end up killing myself … you struggle and struggle and it’s extremely difficult and you think you want to die and you think you’re going to kill yourself … and a lot of my own behaviour’s been very destructive … (Int 1) ... self-­‐harm and make yourself so ill that obviously it’s going to affect your mind as well. It’s completely dysfunctional behaviour … (Int 3) … I tend not to, when things are getting difficult go down to the pub because … I know where that ends … yeah and I end up in a bit of a mess or in Brixton somewhere trying to score drugs … (Int 5) 4.1.2 The external world A hostile external world Interviewees described how they perceived the external world as a harmful, unstable, unpredictable and potentially dangerous, hostile place: … I’m not happy where I live and I haven’t been for a long time and I have disturbance from the neighbours and very paranoid about it … And they’ve been very intrusive to me, ‘cos I’m very, very private person … (Int 3) … feeling that I’ll be destroyed. I feel as though I live in a culture that is making me ill … (Int 1) … panic, anxiety, you get anxiety, you don’t want to do anything, you want to stay in … (Int 6) This can extend to everyday situations that others may take for granted: … I couldn’t make eye contact with people … (Int 2) … anxiety means that a simple bus journey is actually quite a feat of endurance … (Int 5) A shifting world view The way the external world is perceived seems to be influenced by people’s internal worlds and is marked by a shifting world view. The external experience in turn seems to influence the internal state of mind in a vicious circle of negative impacting: 13 … I had this great fear of buildings falling on me and cars just coming up onto the pavement and some reckless mad nutter who just didn’t like the look of me … If nothing has happened I get home and I thank God that nothing has … but if something has happened I’ll get inside and I’ll feel very, very low, feel really like … I should’ve stayed in bed … (Int 5) … I go from feeling reasonably optimistic or balanced or objective to totally despondent … my perception of people involved in my care undergoes like a paradigm shift. The people who I once thought were caring and supportive become money-­‐grabbing … tyrants who are trying to manipulate me and erode my freedom … human beings are all evil and corrupt and everyone’s out to take advantage of me … my whole world view changes very quickly and very markedly … (Int 4) Conflict and isolation This experience of the external world as harmful leads to feelings of paranoia and depression and a feeling of being in conflict with the external world. Most interviewees told us that they felt the only way of feeling safe was to isolate themselves: ... I can’t fit in outside, I can’t be the way, I don’t maybe agree with the values outside therefore the only, the way I see it is I isolate myself when I feel I have to … (Int 1) ... I’m stuck in this situation where I’m safe in my little sad life at the moment, I don’t want to break out of it, although it’s a sad life but I’m sort of happy with it in some ways. It’s easy to stay there, being sad than going out into the open world as such … (Int 6) ...When I get more paranoid, I isolate myself, I don’t go out for weeks and months on end. I just barricade myself indoors, stay indoors … (Int 2) People found themselves in a dilemma between needing to withdraw from the world in order to protect themselves against the perceived harm and recognising the need or wish to be part of the community and the world: ... I know that anything that I don’t invite into my life will have a negative impact on my mind so I choose not to do that and people can sort of sit there and go: ‘oh, well you’re isolating yourself’, well no, I’m actually protecting myself from a whole load of crap that’s going to start going round in my head … (Int 5) … I only feel that I’m feeling better because ... I don’t have to engage with the world. I’m not at the moment, because I’m not working and because I’m not 14 forced out there on a daily basis I can enter out, I can go outside but then I can come home if I feel I can’t cope. That sounds sort of very pathetic but actually it feels like the only way I can control my feelings … (Int 1) Relationships Some interviewees told us about their formative childhood experiences: … some factors in my life have sort of shaped the way I am as well … I think, at an early age as a result of the relationship I had with my father when my parents divorced … my dad went down to his local pub and brought me back a can of shandy and a packet of salt and vinegar crisps, and that’s my first memory and, I was eleven then, so it went on from there and gradually built up and my relationship with him as well was basically alcohol-­‐based … (Int 3) ... I think my mother does have a personality disorder … that’s what my mother represents – anger to me a lot of the time and a lack of empathy, very, very critical, always pointing out small things to you … I just feel that I’ve been around a lot of negativity … it got me very fixated on how I should behave, how I should be and I got caught up in I’m not right, I can’t be like that so I’m not ok … (Int 1) It seems these have shaped the way people perceive relationships and how they interact with others now. This often constitutes a barrier to change and a genuine engagement with the outside world: ... people were so wary of saying anything that could unbalance me, even the slightest remark or even anything that could be conceived as a criticism, could have catastrophic consequences for me ... it got to the point where nobody would dare tell me the truth ‘cos they were so afraid of what I’d do … I was being quite manipulative and I think I was quite aware of that, that it was a way of controlling people and getting all, doing exactly what I wanted, ‘cos I knew there would be no consequences … (Int 4) … I mean, my social life at the moment is sort of pretty much a pub social life … and I feel very inadequate when I’m with people there … just the way they talk and that and a lot of the time I just sit and listen … (Int 3) … I think expectations … what other people might expect from you, like if you go out … instead of sitting in a corner you’ve got to participate in playing a game of darts or a game of pool but I’m quite happy in my corner with my drink of coke … you don’t live up to their expectations then, that’s probably why I haven’t got any friends … (Int 6) 15 A sense of failing in the real world Interviewees spoke about how their difficulties had impacted on their relationship with the outside world in terms of being considered a failure and not being able to fit in: ... I limit myself, I don’t have any friends, ‘cos I think it’s easier for me. I spend a lot of time in isolation … At the moment, someone asks what have you done with your life, you know I have done absolutely nothing, I left school at twelve, drink, drugs, prison, come out, a locked ward, that’s it, I can’t say that to somebody that’s been to university, has got a good job … I said once in an AA meeting about being in prison and someone went ‘argh, that’s disgusting’, and that fucking kicked me in the teeth. So I have learnt just to stay away and shut my mouth because it’s easier for me … (Int 2) … in many ways I perceive myself as a failure, sort of economically and emotionally and in terms of career achievements and things like that … (Int 4) Often this stigmatisation and negative self-­‐judgement in relation to the external world leads to further isolation and the feelings of not being ‘normal’: ... if you imagine floating through life and not really being able to connect with anyone at all because you have to hide yourself, you have to put on a mask to show the world, that you’re not mentally ill because it, there’s such a stigma behind it ... (Int 5) … I don’t know how I will remain mentally healthy if I try and lead, I don’t see how I can live what they call a normal life and be mentally healthy … (Int 1) 4.1.3 Diagnosis We included this data because we felt that the experience of receiving a diagnosis, and the understandings of personality disorders that people receive through clinical diagnosis, might impact on individuals’ aspirations and expectations of recovery. All interviewees talked about the issue of diagnosis but one in particular (Interviewee 4) talked about it at length and in detail, which is reflected in the subject matter and transcript excerpts below. The manner of disclosure Interviewees told us about their experience of receiving a diagnosis of personality disorder/s. The manner of diagnosis – how, when, what and where diagnosis was disclosed – often significantly affected people’s reactions and coloured their and others’ attitudes to the condition and subsequent treatment: 16 … I’ve been taking medication for many, nearly thirty years probably and only this April they tell me that I’ve got personality disorder … and I’ve had it all my life … and I wish I was told this thirty years ago, it would have been a lot easier to handle … (Int 6) … I’ve only really had the diagnosis for about two years or something like that, and it was quite damning, my doctor said: ‘oh, you’ve got, we’ve heard from the mental health team’ – no one told me this, which I think was amazing, yeah? I think it was great, no one tells, like, the actual patient what’s wrong with them … really, really pissed me off when I first started [the group] ‘cos I’ve just found out that people were sitting on this diagnosis and didn’t deem it necessary to tell me, probably from patient protection and all that sort of stuff … (Int 5) The negative impact of diagnosis Diagnosis can have a negative impact. Some people told us that receiving a diagnosis of personality disorder/s felt like a judgement and that they were being labelled: … When I was first diagnosed, I didn’t like it … I felt I was being labelled … (Int 2) ... what I found most difficult in accepting, not only that it had a lot of negative connotations and was considered by many as a sort of pejorative term … I don’t know, I sort of resented it to be honest, to begin with … (Int 4) … But unfortunately people do label you as the person who’s got this … (Int 1) This often led to feelings of being stigmatised by friends, family and the medical profession, for example: being treated differently with contempt or distance and feeling that others do not understand what it means to have personality disorder/s: ... my GP, her attitude changed completely when I got this diagnosis and she was much more guarded and wary of me ... when I finally disclosed that I was bpd [borderline personality disorder] … my friends stopped returning my calls … (Int 4) This can result in subsequent feelings of rejection, hopelessness and confusion: ... and you can’t deny that you will get some stigma and negative effects, definitely, you’d be kidding yourself if you said that that wouldn’t happen … And the thought of it going on your notes and forever following you around, it is a bit scary and that is why you don’t always seek help and open up at the beginning, ‘cos you’re almost being told: ‘don’t seek this help because you’re actually gonna put yourself into a very negative situation’ ... (Int 1) 17 ... some people don’t understand, my father never understood why I was the way I was … that upset me a bit, that he would never, sort of be willing to understand … And sometimes it’s … why can’t you just pick yourself up, you know, what’s wrong with you, just go and do things … if it were that straightforward … (Int 3) The positive impact of diagnosis However, receiving a diagnosis can have a positive impact on people in a number of different ways. Interviewees spoke about how knowledge and understanding of the diagnosis can be a cornerstone of recovery, helping them to understand their behaviour and learn to cope with difficulties as well as improving their self-­‐esteem: … before I found out my diagnosis I was floating around thinking: ‘what’s wrong with me … This isn’t just depression’ … as soon as I found out … I started reading up on it and it got me to a point where I can understand myself … helped me to accept myself, which then increases self-­‐esteem, self-­‐
value … so it’s absolutely really, really important … (Int 5) … Since I was diagnosed in April I’ve been able to reflect on my past, what I’ve had and the opportunities missed and not wanting to take on responsibilities but, understanding, I think it has helped me … (Int 6) One person told us how their diagnosis had led to access to appropriate treatments and signified an end to inappropriate responses such as a prison sentence: … Before I was diagnosed I didn’t get any help, or I was getting the wrong sort of help to start with for a lot of years, because instead of getting the medical help that I needed I was getting put in prison every time. So I ended up nearly nine years in prison before I got … help … (Int 2) All interviewees also found that receiving a diagnosis helped them to relate to others in a similar situation: … for many years, well I didn’t know what personality disorder was. And really it was going to [the group], sort of made that connection then and I read up about it and I could relate … (Int 3) Controversy, confusion and inconsistency The experiences our interviewees describe illustrate the widely acknowledged controversy, confusion and inconsistency surrounding a diagnosis of personality disorder/s. More than one interviewee spoke about the belief that the condition is ‘self-­‐inflicted’ and that therefore the person is undeserving of care; perceived more as a ‘trouble-­‐maker’ rather than genuinely needing help and support: 18 … I thought: ‘but do I deserve it, is this self-­‐inflicted’ … one shocking constant … especially with bpd, is childhood abuse and it seems really prevalent and a common experience … And you think, they’re not deserving of that, they didn’t ask for that, so if that’s contributed to their difficulties then it’s not self-­‐
generated or self-­‐caused and surely we’re as deserving as any other group in need of medical aid so, I don’t know. Nobody asks to be ill, do they? … (Int 4) Interviewees told us of their difficulties in moving past the label of personality disorders, seeing something intrinsically wrong with themselves and their character. They found it difficult to identify positively with such a diagnosis as they felt they were still sometimes viewed as the ‘person being the problem’ rather than a ‘person with a problem’: ... the main difference is when you’re suffering from depression or something it’s seen as an illness, something external and when you say that your personality is dysfunctional it’s like you’re fundamentally flawed as a person, there’s something inherently wrong with you in your psychological makeup which is not external, which is not biochemical and that frightens people, I think … (Int 4) Some people felt that a diagnosis of personality disorder/s is sometimes given to people who question their treatment or who do not fit into other categories: … And then part of me was thinking, they use pd for an excuse when they haven’t got a diagnosis … (Int 2) Other interviewees described receiving multiple diagnoses as well as changes of diagnosis and the uncertainty and mistrust that this creates: … well, my diagnosis changed, it’s changed a lot … (Int 4) … [the doctor] did say in a report that I had avoidance personality and he’s quite right, I can so relate to that but I also can relate to other aspects of other ones as well so then it gets a bit blurred, it gets a bit confusing and how do you diagnose someone officially with one particular … (Int 3) The complexities and inconsistencies inherent in the diagnostic criteria for personality disorders can also be confusing and off-­‐putting: one interviewee found it difficult to recognise themselves and others in some of the descriptions: … when I read about it, there were things like sexual deviancy, promiscuity, aggression, violence … it hasn’t been my experience with the people with pd who I’ve met and interacted with … (Int 4) The same person told us about their experiences of being judged by others and the outside world in terms of their diagnosis of personality disorder/s: 19 … there seemed to be this view that we’re all dangerous and have propensities of violence … Taking a blade and cutting yourself is an aggressive act but I would never do that to another person … (Int 4) Untreatability v treatability Interviewees described their experiences of receiving a diagnosis which is still viewed by some professionals as untreatable: … Well, having a diagnosis of borderline personality disorder I’m constantly told by people that I’m not going to get any better … my doctor said: ‘you won’t get better after this’ … (Int 5) However, their accounts do illustrate the progress which has been made: ... I’ve had very mixed feelings about this … I was told that … ten years ago personality disorder was considered untreatable and they just turned you away and now there is more optimism ... (Int 4) 20 4.2 Personality disorders and recovery Our interview schedule asked people to reflect on the concept of recovery and what it meant in terms of their life experiences. We present this data in seven thematic areas: Personal understandings of recovery; Acceptance; Positive feelings about recovery; Recovery and relationships; Recovery and society; Obstacles to recovery; Goals. When we came to write up this section we found that there was a lot of overlap between these seven themes. In addition, many of the extracts from interviews that we have quoted below could have been used to illustrate more than one theme. In ordering and presenting these themes we have tried to create a coherent narrative, while at the same time remaining faithful to our interviewees’ individual understandings of personality disorders and recovery. 4.2.1 Personal understandings of recovery The meaning of recovery The idea of recovery, as something personal, did have meaning and relevance for our interviewees. Broadly speaking, people talked about recovery as being about the hopes, expectations and aspirations of what they might be able to change for the better for themselves. For most interviewees this seemed to be a mixture of coming to terms with their shortcomings and learning to cope with their difficulties: … Coming to terms with yourself and your shortcomings and things like that and picking up skills and coping mechanisms so that you can lead a normal life … (Int 5) … it means learning how to actually get better, I think, through therapy … and how to just live your life … in a better way, in a more functional way … feeling more positive, more self-­‐confident I guess … or able to do things … (Int 3) … It would mean getting a lot more, or getting some help to help you get better. Or learning to cope with one’s conditions … (Int 6) Interviewees told us that full recovery in the sense of being without any difficulties at all did not feel realistic or possible: … I’m not actually sure if one will recover from personality disorder ‘cos there’s no medical cure for it. But learning to live with it … (Int 6) ... I think my personality disorder will always be there, I don’t think it will ever go away but I might be able to sort of at least be happy and control it more … and manage the feelings more and thoughts, I don’t know, but I’m willing to try anyway … (Int 3) 21 ... I think at this stage in my life I would say to you that I don’t think I could make a full recovery … (Int 1) However, for some people the concept of recovery also carried the hope that it is possible to have an experience of a ‘normal’ life: … For me personally it means ... sort of reintegration into the community and sort of mainstream society … to combat the feeling of alienation that I experience, maybe diminishing the frequency of self-­‐destructive behaviour, suicide attempts … hopefully stopping the self-­‐harming altogether … fewer inpatient admissions … establishing personal relationships, re-­‐entering education and eventually finding paid employment I suppose would be the ultimate objective … (Int 4) … recovery for me … I suppose, a normal life, without being on a ward, going to prison, self harming … to mix with the community … to get the best out of life … (Int 2) … if I keep going, have to keep going until I die, I’m going to keep trying to get better and try and have ... a shot at ... contentedness, not happiness or anything ... (Int 5) Signs of recovery: behaviours Interviewees talked about recognising signs of their individual recovery in terms of changes to their behaviours: ... I suppose there are sort of physical things, like personal care, taking care of myself and watching my diet, shaving, which I didn’t do for a long time and having a bath which, again is something I didn’t do very well and ... keeping my flat tidy ... (Int 4) ... I suppose now, the longer I have been in recovery, the easier things are getting to do, so now if I say I am going to do something, I try and do it today … part of, I guess, the pd, I was using drugs and alcohol a lot, and I have been in recovery for that, five years in September … And I think that’s helped, it’s helped a great deal … Yes, and self harming is really cut down a lot … (Int 2) Signs of recovery: thoughts and feelings As with behaviours, people told us about recognising signs of their individual recovery in terms of changes to their thoughts and feelings: … I had to discipline myself not to let myself go on that negative train of thinking … I’ve also learned to minimise major stuff and maximise minimum stuff … (Int 5) 22 … I didn’t even know my likes or dislikes, I didn’t know anything about me, it’s only now that I can say: ‘Oh I like doing this and I enjoy doing that’ … (Int 2) … Changes, yeah, more of an awareness with my difficulties and more of an understanding that I’m not alone and there are other people with great difficulties as well … (Int 3) Strategies for recovery: behaviours Interviewees told us about the broad variety of coping strategies which helped them stay well. These can be seen as types of behaviours which create a link to the external world which in turn have an impact on the internal world. These covered areas such as basic self-­‐care and a daily routine: ... I generally try to eat quite well to improve my sort of state of mind ... keeping to a routine ... keep taking the medication even though I might feel better … keeping my flat clean and tidy … I’ve learnt that if I discipline myself to do it whether I want to or not, it’ll make me feel better … (Int 5) … I think a lot of people with pd … have eating disorders … and it all just plays havoc on the brain … I try not to eat on my feelings because otherwise, it feels good at the time but afterwards I get all depressed and go: ‘why did I do that’ … (Int 2) … at the moment, I’m trying to get up early, once I have a shower … I have a friend who rings me feeling bad and I say: ‘well at least try and take a shower and put clothes on’ … (Int 1) Some people spoke about the importance of physical activity: ... physically changing the proportions and shape of my body was ... exercising a measure of control over myself and my life. And it was empowering ‘cos in a very visual, sort of visceral way I was able to observe the positive changes that I could make in my life ... (Int 4) ... just to get out and get on my bike … you can still be part of society and the world without having to communicate with people, so I find cycling really useful … (Int 2) Others described how doing different things can help to deflect difficult feelings and act as a distraction: ... if I can absorb myself completely in something else … it may not be productive but it’s a damn sight better than taking thirty temazepam or putting a plastic bag over my head … finding distraction techniques is very 23 important, very helpful, I think … what I found what really helped is … keeping a mood diary as well and monitoring my moods … (Int 4) ... I think you have to have things that distract you, that you can immerse yourself in … creating something, or doing something with my hands ... then you have something at the end, even of a very bad day, so it’s like you haven’t just spent the whole day lying in bed ... (Int 1) Many people recognised the need to change their self-­‐destructive behaviour which could lead to further deterioration: … I know that I must stay away from intoxicants … things like alcohol, disinhibitors, anything like that is very, very dangerous to me because all it takes is, you know, a couple of drinks and then suddenly all my restraints … just evaporate and any self-­‐discipline I might have just is gone and I behave in a totally self-­‐destructive way … (Int 4) … taking drink out of it and things like that and keeping myself out of potentially stressful situations sort of limits the impact of it, it becomes a lot more internal and that sort of thing … (Int 5) Strategies for recovery: thoughts and feelings Interviewees told us about making changes in their cognitive and emotional responses to difficult times: … I can tell myself it’s a load of crap, and that there is no point … Now I tell myself, I wait ‘til tomorrow and if it’s no different then, I go back and normally, by the next day, nine times out of ten, I feel a bit better … (Int 2) … Usually it’s only a few minutes because I have to kick in my coping mechanisms and talk to myself and say: ‘this is part of your illness, it’ll pass in a minute’, what thoughts are there that shouldn’t be there or that aren’t doing me any good so I have to, like, sit down, identify it, face it and then take steps to counteract it … (Int 5) … how I’m feeling and how I’m coping with things in my life, I think as things start to improve I think that is a step towards recovery … (Int 3) People also described how changes in their behaviour led to changes in their thoughts and feelings: … Yeah, I suppose, without drink and drugs in me, I don’t act straight away on my behaviour, I can take a bit more time to think, not always, but most of the time I sit there and think before I act … (Int 2) 24 4.2.2 Acceptance As well as issues around acceptance, this theme also concerned awareness, recognition and insight, and the impact of these on well-­‐being and recovery. Triggers for recovery Most interviewees told us about a point in their life that started off the recovery process. This could be a ‘light bulb’ moment, a longer journey where they are guided by others, or a point at which they reached ‘rock bottom’ which triggered the recovery journey: … it really has been literally just one day a little light bulb went off and I thought: ‘this isn’t working, let’s start to do something different about it’ ... (Int 5) … I think I got to a stage in my life where I think the mental torture ... You know I’d rather someone would chop my arms and legs off ‘cos that would have been less pain than what was going on in my head. I think I needed to get to that stage in my life where it was just … this is it, something is gotta change, I need this help, otherwise, I suppose, a matter of life and death really. After my last overdose I think, that was it, just sort of … can‘t even fucking do that right … (Int 2) ... I think it really was getting into the mental health service and then being guided towards this point in time ... and again the realisation that I can’t attempt change if I carry on with this pattern of behaviour … a lot of it’s for me being educated and advised and guided, by professional people and also going to [the group] and people’s experiences there ... (Int 3) … in [the group], during my 3 years … I learnt that other people have been diagnosed this and they still come into group every day living their normal day lives and … it helped me to understand how I’ve buggered up my life up to that stage … by walking away or rejecting good things in your life … (Int 6) People said that becoming more self-­‐aware and gaining an understanding of themselves and their difficulties was an important trigger for the recovery process. An important aspect of this increased self-­‐awareness was realising and recognising that change has to come from within, being willing to change and accepting what is needed in order to move forward: ... I think it’s the ... recognition that I have to change certain things to be able to give myself a chance of any sort of recovery and primarily that is stopping alcohol … that’s taken me a long while to accept that, that it is a major problem … (Int 3) 25 … It was my own thought process, that I can’t carry on thinking and behaving like I was … I saw it in a film somewhere and this bloke said: ‘the definition of insanity is doing the same things over and over again expecting different results’ and I found that I was doing the same thing over and over again ... unless you understand yourself I don’t think that ... you can recover, really it’s been a question of ... being able to face myself and look at myself warts and all, go: ... ‘what am I going to do about it?’ Rather than: ‘what can someone else do for me?’ … (Int 5) ... I was totally off my head at the time … And I wasn’t ready to change either … I think a lot of this is … a willingness as well … (Int 2) … I think … that I have more insight now. I understand, as an adult, more about maybe why I was feeling the way I was and do feel the way I do now ... (Int 1) Self-­‐reflection and progress Interviewees described how improved understanding and self-­‐awareness made it possible to reflect on patterns and destructive thought processes. They were then able to make the decision to battle negative feelings, thoughts and behaviours through cognitive processes, and to regulate ups and downs better: ... it’s been literally me sitting myself down and giving myself a good talking to and saying: ‘look, you know, you can either carry on in this messed-­‐up way of thinking’ or .... ‘we can sit down and we can break it down into things that I can actually achieve’ … I’ve recognised that if I carried on thinking like that I’m just gonna keep tripping myself up and I’m never gonna have anything nice to say about myself ... (Int 5) ... I realise that it’s not actually all that healthy to be on your own ‘cos all I do then is listen to the radio and watch television and I tend to seek out things which match up with my negative ideas about life … (Int 1) … it’s just the ability to recognise things can and do change and to hold that in mind … (Int 4) Empowerment and control Interviewees’ accounts showed that improved understanding, self-­‐awareness and acceptance led to empowerment and improved control over their lives. This does not seem to be a simple linear process, and neither did interviewees talk about a common order in which these changes were achieved. Rather, people’s accounts seemed to describe a circular process where individual factors are very important. Whether things like coming to terms with and accepting oneself ‘warts and all’, 26 taking greater responsibility for oneself and one’s actions or realising the importance of self-­‐care stand at the beginning, or are part of the process of recovery can be interpreted differently: ... Well I think maybe when you understand … maybe you don’t beat yourself up so much … (Int 1) … but I am the boss of my own feelings today, I try to not let no one be powerful enough to make me feel … it’s down to me how I feel. If I am having a bad day I can’t have that lookout, I can’t look out at life like that. So it just depends on how I‘m feeling in myself as well … (Int 2) A realistic sense of recovery Interviewees’ descriptions of greater self-­‐awareness and understanding seemed to be linked to their acceptance of realistic aims and expectations of recovery. People told us how their newly-­‐found self-­‐awareness allowed them a greater connection to their own feelings and a realisation that things made more sense: ... I used to think I could get into this happy-­‐clappy world and state of mind and things like that and I’ve realised over the past couple of years that … it’s not a natural state of mind so it’s just the same as being really depressed. I don’t think you can be deliriously happy and I don’t think that you should be really depressed but I think that you should be content with your life. So that’s really what I’m aiming for … (Int 5) … if you’re talking about recovery, maybe it’s not about reaching ... like a certain level on the day that you die. Maybe it’s just that you’re different from how you started and hopefully to me then recovery would be about developing in some way ... understanding … (Int 1) ... I thought that was the answer but I kind of accept that it isn’t … (Int 4) 4.2.3 Positive feelings about recovery We began with a broad theme Feelings about recovery which encompassed a whole range of feelings about recovery in a variety of ways. We also had a theme named Obstacles to recovery which looks at what can get in the way of recovery. For the purposes of this report we have therefore renamed this theme Positive feelings about recovery and have included data about negative feelings in the Obstacles to recovery theme, below. Self-­‐esteem and self-­‐worth Interviewees told us about the positive feelings they experienced which they felt helped with their ongoing recovery. It appears that feeling more positive in general 27 seems to be as much a sign of recovery as a requirement to maintain a sense of recovery. Many interviewees referred to the importance of achieving a feeling of self-­‐worth and self-­‐esteem: … Valuing yourself and finding purpose in your own life, a reason to recover, a reason to try … I think cultivating and developing more self-­‐esteem is important … (Int 4) … self-­‐worth is very, very, very important, self-­‐confidence and things like that, it helps you get to input, appointments and helps you continue with your treatment really … (Int 5) … I think if you don’t believe or have a bit of trust or faith in yourself then, everything you do comes from within, don’t matter what people around you say, you‘ve got to believe it yourself, as well … I had no self-­‐esteem before … But time has gone on and I built my self-­‐esteem. I think that definitely helps … (Int 2) People also told us how important it was to be valued by others: … I think being valued is important. Builds self-­‐confidence and makes the recovery journey seem worthwhile … (Int 4) … I don’t like to think that I need other people to think well of me for me to think well of myself but when people do think well of me it helps me to feel well in myself. So yeah, very important … (Int 2) … Everybody wants to feel valued, don’t they? I mean, it gives you a reason for living … (Int 1) Hope and self-­‐belief Hope and a belief in oneself were seen as a crucial component to recovery by all our interviewees. This could be generated from within as well as come from the outside: … everybody should believe, whatever disorder that they are that there is a light at the end of the tunnel, you know, some kind of recovery programme … it would be knowing that there’s a solution out there … will give one hope … (Int 6) … if you don’t have any faith that you can get better … you’re stuffed before you start really, aren’t you? … (Int 5) 28 … just the hope that something will come of it and I can change … I think that’s very important ‘cos if you’re not given any hope, if you’re not going to have that self-­‐belief, you’re not going to do anything about your situation … (Int 3) Self-­‐confidence and determination Interviewees also described the importance of self-­‐confidence for recovery: … to acknowledge that you’ve done something well, like, coming to this interview, I was a bit anxious but I’m ok now and … I think I’ve done well getting here but it’s telling myself: ‘well done, you done it’ … I’ll probably get a pat tomorrow at group … (Int 6) … feeling more positive, more self-­‐confident or able to do things, I think if recovery wasn’t working you would definitely know that because you’d just be the same … (Int 3) … it’s about gaining confidence and being yourself … (Int 1) One person spoke about the importance of determination when things felt difficult or other people questioned their ability to get better: … my doctor has said: ‘you probably won’t get better’ … my stubbornness kicked in then and said: ‘well, maybe other people didn’t but I will, I’ll do it’ and if it takes me to my last breath to do that, I’m gonna keep doing it. ‘Cos once I set my mind on something, that’s it, it’s gotta be done … (Int 5) 4.2.4 Relationships and recovery Impact on relationships as a trigger for recovery From what people told us about their relationships, it appears that a trigger to recovery is often recognising the impact one’s own behaviour has on others. This can lead to greater self-­‐awareness and understanding of what needs to change. Interviewees described the effect of their self-­‐destructive behaviours on those close to them and what they had learned from this realisation: … it’s like shock therapy ... I came to the realisation that ... I managed to alienate all ... my lifelong friends … and now my family … it’s been a bit of a wakeup call … you can only push people so far, I think that’s been instrumental in me ... becoming more ... responsible for my own behaviour ... (Int 4) 29 … I don’t want to put my mum through any more of this … I feel very guilty, I do feel very ashamed and guilty of the situation I’m in. It’s another big reason to sort of try and get better or make things better for myself … (Int 3) Interviewees also spoke about the impact of other people’s behaviour on themselves as a valuable learning experience: ... literally it’s been by watching people have disaster upon disaster has made me re-­‐evaluate the way that I think and things like that and I don’t think anyone could tell me that, I really don’t think they could have done … (Int 5) External changes arising from positive and healthy relationships All interviewees recognised that enduring and trusting relationships are important for their personal recovery and well-­‐being. They were able to identify the positive changes they had made in terms of making and keeping friends and socialising: … Now I haven’t got millions of friends … I don’t need a lot of people in my life anyway, but just having a few that I can go to it definitely helps … (Int 2) … I don’t think that any more … I would put that down to the quality of friendships that I’ve made. I haven’t made tons of friends or anything like that but I’ve made some really absolute diamond friendships … the thing that’s really made a difference is being able to socialise … (Int 5) People also spoke about being able to accept feedback, support and encouragement from their peers and reciprocating in kind. They found this interaction a valuable aid to their recovery: … being in the group … you get to understand each other and take on board quite a lot, how one copes, what don’t cope, when they’re having a bad day you have to, give them a bit of leeway, don’t put them under, under too much pressure but, yes, so a lot of support in [the group] which is really good … (Int 6) … on a few occasions I’ve been round people enough times and heard them say to me that they do feel a bit better because of our interaction … (Int 1) Interviewees also told us how important it was to them to have friendships with peers with whom they could identify and who would not judge them: … knowing that I have got somewhere safe to go, without being judged, well if people are in a bad mood then you will be judged, but nine out of ten times you can go there, and you know you are not judged. And other people can identify with your way of thinking … (Int 2) 30 … I think people need friendship, they need somebody that they feel they can turn to that won’t necessarily turn away from them in disgust or anything or judge them … (Int 1) Internal changes arising from positive and healthy relationships Interviewees described how forming positive relationships with others had led to changes in their thoughts and feelings – their internal world. People were able to identify a shift in their thinking and emotions around engaging with others: … I just didn’t want to try and be able to manage personal relationships and develop lasting bonds with people but now I think I don’t idealise solitude, I sort of think it will be quite nice to have that kind of support and make friends … (Int 4) … I spent so many years not giving a damn about anybody … If I upset someone it would be like, that’s your stuff not mine. I couldn’t care less. Today I do think about other people and take other people’s feelings into account … it makes me feel good when I help others … (Int 2) People told us about the importance of building trust: for some this was something they had managed to achieve and for others it was something they aspired to: … I trust them which I didn’t have before probably because I wasn’t being honest with anyone so I don’t think anyone could be honest with me … (Int 5) … the trust thing, learning to trust people more. That would be a positive thing … (Int 3) Interviewees also spoke about feeling a greater ease with themselves in friendships with peers who made them feel safe and supported: … I don’t have to hide anything, I don’t have to pretend that I’m well because it makes them feel more comfortable about being around me. I can literally be myself … (Int 5) Others recognised that establishing healthy relationships which in turn made them feel more positive and secure about themselves could be a route to a wider engagement with the outside world: … a more sort of constant and solid idea of self and personal identity, it’s not something you can do in isolation … by having good, positive relationships where you get feedback and they reinforce the sort of positive aspects of yourself then you’re able to become more functional, more normal and integrate more easily into society … (Int 4) 31 Ongoing difficulties in relationships While positive relationships with family, friends or peers can be an important source of support for recovery, most interviewees also felt that setbacks in recovery were often closely connected to other people’s reactions and behaviour towards them. This included feeling judged, rejected or not understood, feeling burdened by other people’s issues or being affected by feelings of inferiority: ... being judged I think. I was judged in [the group] … and when that happens, I find myself isolating myself again. I did the last time that happened, I went home and had a week of, like, hating myself because of the way someone treated me … (Int 2) [talking about the group] … I mean, it’s been detrimental to me in a couple of respects … someone disclosed something to me last year which caused me lots of problems in the group ... I mean, I have a history of finding it hard to trust men especially ... (Int 3) ... it was like the fence or the barriers were down … and each time I’ve done that I’ve got into a relationship with somebody else who has problems and then they may be very destructive towards me and I don’t trust myself now to, I don’t feel that I’m healthy enough … it’s only now that I really recognise that I have to be very careful because, I don’t actually think I can be with anybody … (Int 1) People also struggled with family relationships where their difficulties were concerned: ... my mum’s very positive … very supportive and she wants so desperately to understand, I think she finds it very hard sometimes ‘cos she feels that I should just be getting on with things as it were like everybody else has to … (Int 3) … my children are not quite 100% aware of what my problems are. They know I’ve got this problem, that problem but not 100% … so there’s no support there or understanding … it’s not so much being embarrassed, it’s putting pressure on them I would think, on my family and I don’t think I could do that … (Int 6) Other interviewees spoke about the absence of family contact and the effect of this upon them: … Well I don’t have no contact with my family … (Int 2) … I sometimes think if I had a wider extended family … where I felt more united and I could engage in that, then that would … allow me to go out and 32 have bad experiences, a bit like a child who goes out, knows they can run back to mummy and they’re safe. But I don’t have that … in fact I feel like I’m supposed to be the strong one, because I’m a mother but I don’t actually have anyone else, I don’t have a sister to go to, I don’t have a mother to go to or a father to go to … (Int 1) Some people also talked about the absence of friendships outside the peer support group: … friends, I haven’t got any friends really, only [the group] people … (Int 6) … And friends, I do class them as friends, but I have not swapped phone numbers … I just see them when I attend [the group] … I think if you’re put in a situation where people would get to know me, I think that could have a negative effect on my recovery and not a positive one … (Int 2) 4.2.5 Recovery and society Interaction: ambivalence Interviewees’ accounts suggested ambivalence towards integrating or interacting with society. People talked about both a wish to feel part of society, while also questioning how much integration they felt able to cope with. Positive attitudes included an awareness of the importance of interacting and of how positive experiences of interaction might be part of a recovery process: … personally for me now it means reintegration into the community and sort of mainstream society, to combat the feeling of alienation that I experience … I think if you interact with people functioning in wider society then it can give you hope and give you aspiration to go on and do more things and it can be sort of self-­‐perpetuating, you know, it can lead you on to engage in more activities and hopefully recover fully … (Int 4) … I’ve met over the past couple of years, seen people actually, not say recovering fully but actually gaining more confidence through contact with other people and actually getting out and doing things … (Int 3) Misgivings about interacting or of trying to fit in with society were expressed by interviewees as a dilemma, weighing up the costs of exposing themselves to increased contact with ‘normal’ society: … sort of try and interact with general society ... and it will require a certain amount of me hiding again but I don’t have to hide from everyone, you see, so and it’ll help me … in order for me to be able to get back into normal society I’m going to have to step out of that and feel quite uncomfortable for a period of time while I adjust to it ... (Int 5) 33 ... I think I can cope with my friends at [the group] and sort of people in my local pub but then it’s very restricted as well but I still find it very, very difficult ... (Int 3) ... too many negative things ... start to make me feel a bit unstable, so even though I’m trying to be stronger and I feel stronger maybe it wouldn’t take that much to destabilise me … (Int 1) Limited contact: a conscious choice As a result of that dilemma – because the outside world and society could be experienced as actively harmful and damaging – people told us they sometimes made a conscious choice either not to interact or to limit the amount of contact they had. Interviewees reported feeling unable to cope with the challenges that integration and interaction with society brings because of their difficulties: ...I haven’t lived what they call a normal life. So it’s easier just to stay away from the people in the community than to actually blame myself … (Int 2) … we live in a disorganised world, we don’t live in anything that is consistent and life, much as I try and protect myself from it, it does tend to wheedle its way through … I do get the odd wave of panic that comes up but unfortunately all of my coping mechanisms go flying out of the window when I’m faced with something that’s beyond my control … (Int 5) ‘Being normal’ The idea of ‘normal life’ or the ‘normal world’ came up repeatedly in interviews. Earlier in the findings we showed how interviewees could experience the external world as hostile and alienating. Their accounts suggest that this dilemma about how much interaction they could cope with can be, at least in part, attributed to a notion of the outside world as ‘normal’, of trying to fit in with this normality, and of a sense of failure and alienation when unable to live up to, or pass for ‘normal’: … I also work pretty hard at being seen as normal … you’ve built up little tricks and things like that which you do when you’re trying to function in normal society, you have little tricks that help to disguise you so that you can go through … (Int 5) … I’ve got a long, long way to go … I think that to the day that I drop dead, whenever that is, I will still be, I don’t know what normal is … (Int 1) Conversely a sense of relief was also expressed at being out in the normal world, doing normal things, with contact with other people with a lived experience of personality disorders sometimes being seen as damaging or limiting: 34 ... there’s benefit and reassurance in identifying with people who are living on the fringes of society ... but then it can alienate you further as well … (Int 4) ... what I’m seeking now, because, much as I love [the group] and what it’s done for me I would like to go out and talk about crap, yeah? And talk about nothingness ... not touch on mental health and things like that … sort of try and interact with general society ... (Int 5) Increased interaction: work, education and volunteering Opportunities for work, education and volunteering were considered important in order to develop confidence and make progress towards integration into society: … I am starting college in September ... I think college is a big part … of the change for me … (Int 2) It was also acknowledged that this process needs time and support and would have to be a stepwise process in order to cope with setbacks and to develop the confidence needed to take on more. There were ambivalent feelings about this due to fear of, and often previous experience of rejection, of encountering stigma and of relapsing or not succeeding: ... I’m trying ... to do some part time work … It would help me ... meeting people which would be a great help … I couldn’t go into a full-­‐time job straightaway. It will have to be a little step at a time. I know if ... anyone said: ‘go into a full time job, you’ve got to start Monday’, I wouldn’t last five minutes. I will need to build up my confidence. I’ve got a little bit but it will need to improve … (Int 6) ... I’m not very confident that I’m going to be able to handle all the intricacies of going to work and how people engage with one another … it would be nice to think that everybody is compassionate and that everybody will give you a chance but unfortunately … I’ve heard stories of people still getting bullied ... (Int 1) Increased interaction: society’s rules and systems Interviewees told us how negotiating society’s rules and systems such as benefits, medical examinations and housing were often felt to be an obstacle to recovery. Most people reported negative experiences which could lead to major setbacks: [about medical assessments and benefit applications] ... to have someone literally decide after they’ve met you for, like ten minutes that ... you’re not as bad as you’re saying that you are, because this is what they see, it’s really sort of soul-­‐destroying and it can make me go into like crisis mode ... (Int 5) 35 ... I do get very anxious about having to go through these things about money ... I feel humiliated having to prove that there’s something wrong with me ... having to prove constantly every time … it’s very distressing and the forms you fill in ... it puts you in that space again … and then you feel that people are trying to get you to not have these things … (Int 1) 4.2.6 Obstacles to recovery We have already covered certain obstacles to recovery in many of the previous themes. Other obstacles seen as relating to treatments, services and support are covered separately in the third group of themes presented below. This section covers issues which we did not feel fitted into existing themes we had already defined and relate to the internal world. Thoughts and feelings: negativity Interviewees spoke at length about the thoughts and feelings which they felt impeded their recovery. A negative state of mind and feelings of depression may cause people to give up, feel despondent, hopeless or lead to dwelling on the negative. General feelings of negativity seem to be one of the ingrained feelings which appear to determine everyday life as much as the recovery process. It is linked to the fear of failure and lack of expectations and hope of recovery: ... you don’t recognise that at the time, you just become totally despondent and disinterested in everything … (Int 4) … there’s no positivity there, no sort of sense of even wanting to recover, it’s just ... can’t be bothered, what’s the point … I was in a very negative state yesterday … it’s just having those thoughts it’s not very nice and it’s not a normal way to, to be as far as I’m concerned really … (Int 3) ... you don’t feel no achievement … they do encourage you, praise you but with the way our minds are working we don’t feel like we’ve done nothing … (Int 6) Thoughts and feelings: anxiety and fear Feelings like anxiety, fear and panic seemed to inhibit interviewees’ ability to deal with difficult issues or lead to isolation: … depression … panic, anxiety … you don’t want to do anything, you want to stay in, watch tele sometimes. It’s quite a boring life but … you’re scared to break that cycle, and people say: ‘you’ve got to break the cycle, you’ve got to break the cycle’ but it’s so easy, I go in, close the door, that’s it, that’s my place … (Int 6) 36 … I have a lot of fear involved that it’s not going to work that I’m just not going to change, there is always that great fear … (Int 3) … But I think spending too much time on my own, not going out, could be quite dangerous for me … (Int 2) Thoughts and feelings: polarised thinking Many people spoke to us about the effect of extreme and polarised feelings on their ability to maintain a constant sense of recovery: … I’m aware that I’m beginning to be on a downward slide … I think it’s going to be very difficult for me to be objective and to give a balanced view of my progress and my regression … I think for me the nature of depression is this sort of polarised thinking and everything’s bad and I can’t remember … I won’t be able to identify, or don’t want to, any of the things that are changing for the better in my life … (Int 4) … The only thing that changes is the fluctuation of my emotions so I have to bear that in mind as well and not get full of despair … so I have to sort of cushion it between getting too high and getting too low. I have to try and keep this sort of balance going which is really, really hard work … (Int 5) Thoughts and feelings: dissociation and uncertainty Many interviewees talked about not knowing how they felt or how to feel, or of feeling very cut off (dissociation) from feelings in general. This in turn affected their optimism about being able to make changes: … But you’re asking me to be able to change. Well, you can’t ask me to change if I don’t know what’s going on inside my head … (Int 5) … but you can’t explain to yourself … you’ve had a good relationship, good jobs, friends … we find it really puzzling, we can’t put our finger on it, why did we walk away from this relationship, job … (Int 6) The internal world: an everyday struggle All interviewees described in depth the constant and everyday struggle they experienced trying to make progress in recovery. Often this could feel like being engaged in a never-­‐ending process which could sometimes lead to questioning the value of recovery in their lives: … I’m 58 next month – the best of my life has gone, so there’s nothing to look forward to and some days it’s just a struggle … (Int 6) 37 … I can’t stress it enough, how much hard work it is … it’s just really, really tiring, it is just so exhausting to be constantly looking out for triggers and putting coping mechanisms in place and then all of a sudden it doesn’t matter what work you’ve done, your mind kind of rules you … one of the thoughts that pops in at that point is: ‘why am I bothering? I’m in a Groundhog Day’ … (Int 5) ... I’m not weak but … some of these feelings are … well the easiest way to say it is it’s so deeply ingrained in me that however much I try and I am trying, I’m not sure that I can turn everything round because your history’s your history, however much you try … (Int 1) Some interviewees also told us how sleeplessness or physical problems may worsen emotional difficulties and impact on the daily effort of recovery: … I find that if I lie awake for … 14 hours there’s far more chance I’ll be very unbalanced and psychotic and anxious the next day … (Int 4) … my body’s quite weak at the moment, I’ve got a heart condition, bad back and they want me to walk and exercise and do this and that, I haven’t got the energy, some days you get out … sometimes it’s an effort to get to the group … (Int 6) Behaviours Self-­‐destructive and self-­‐harmful behaviours were seen by all interviewees as one of the major obstacles to recovery. This may include using intoxicants such as alcohol and drugs, using prescribed medication excessively, as well as self-­‐harm, suicide attempts and self-­‐neglect. It also relates to harmful in the sense of ‘dysfunctional’ behaviours: doing something despite knowing that it is harmful: ... I think a lot of us … tend to self-­‐destruct in a lot of ways and that’s a habit as well, you need to eat and you don’t eat, you need to drink, you don’t drink when you’re really bad … I mean, whenever I’ve been really bad in my life I shut the door and I’ve gone to seed in private … (Int 1) … I felt ill and I knew it was a lot to do with the drinking, self-­‐harm and make yourself so ill that obviously it’s going to affect your mind as well. It’s completely dysfunctional behaviour … (Int 3) ... all it takes is a couple of drinks and then … I behave in a totally self-­‐
destructive way … (Int 4) … I know that if I don’t keep up with my self-­‐care something will slip and it will take me along with it ... (Int 5) 38 People described how self-­‐destructive behaviour often took over as a result of a crisis, a negative state of mind, and/or coping mechanisms breaking down. It may also, in a negative vicious circle, lead to feelings of failure which themselves are often triggers for self-­‐harmful behaviours or thoughts: ... you can start coming out of a bad patch and start putting in coping mechanisms and things like that … just doing your daily routine … but when something comes up, for some reason I forget all of my coping mechanisms and that will make me go into crisis mode and then I’ve got to go into crisis limitation mode so not impacting upon it by going out and getting drunk and sleeping with a random person and then waking up feeling shitty about myself … (Int 5) ... It’s difficult to do anything, last weekend I had a bad weekend and that means I’m in bed all the time … You know, when you’re like that you don’t want to nothing, you don’t eat properly… your bad days, it does set you back, knocks you back a bit … spend all day in bed sleeping … (Int 6) 4.2.7 Goals External goals and aspirations Future goals and aspirations that related to the external world were discussed by all interviewees. These goals included: increased social and recreational contact with others and living a healthier, more active lifestyle: ... if one could get that together and go out ... just once or twice a week, go to the local pub ... (Int 6) ... Healthy diet and exercise, socialising, having some sort of structure to your day, whether it’s working an hour every two weeks or volunteering or, there’s lots I’d want to do … (Int 3) Other people listed having relationships (including improved family relationships), taking up educational and employment opportunities and being able to enjoy their hobbies. Different interviewees had different aspirations and also seemed to be more or less assured that those might be achievable: … at the moment I want to start looking at my choices in partners … I’d really like to get back the skill of buying a travelcard and just going to an art gallery for the day on my own … get a job and become a functioning member of society and all that … But that’s like, I don’t know when that’s going to happen so, I’m trying to break it down to smaller steps … (Int 5) 39 … I’d like to re-­‐enter education and finish my degree ‘cos I haven’t quite finished that yet … maybe establish more interpersonal relationships, real friendships with people, and maybe a romantic relationship would be nice … (Int 4) … I’ve got hobbies which I’d like to get back into and even start enjoying again, music for one, I play guitar and love my music but at the moment I just don’t even play music indoors … reading, I mean I love reading and I haven’t been, it’s almost become too much of an effort to do things that I like … (Int 3) Internal goals and aspirations: thoughts, feelings and behaviours In parallel, interviewees spoke of a range of internal changes – to their feelings, thoughts, behaviours and sense of self – which they would like to achieve. These included being able to control and manage feelings and thoughts and becoming more self-­‐confident, self-­‐assured and positive: ... I don’t know if it’s possible, it’s about gaining confidence and being yourself, it’s not even so much self-­‐esteem ... I would like to be able to make more decisions and sometimes I think that my head is on a bit straighter … (Int 1) … I’d like not to feel the way I do most of the time, there’s always an underlying feeling of doom and gloom which I’ve just carried with me for years and years. I’d like that to not be as pronounced, not be as damaging to me, which it is, so, to change feelings definitely. There’s a lot of confusion in my head, and I just get very confused, I find I can’t organise thoughts and in turn I can’t organise my life so that, I’d like to change, definitely … (Int 3) I’m hoping to do more … but at the moment I’m alright at the moment … when things come up I need to build up a skill base, ‘cos literally … I had been doing the same thing for so many years that it’s not gonna wipe that out in two weeks … but I’m gonna have to develop a whole new way of thinking, so that takes time, doesn’t it? … (Int 5) Other people told us about their desire to change their behaviours and for a more balanced and stable mood, including reductions in medication: … I don’t self harm every day, every week no more, I do relapse in that part, but maybe it would only be four times a year. So to me that’s progress … I need to sort my anger out more, definitely … I need to get more honest as well. I don’t lie, but I am not very honest about, if something is going on I won’t … I sit back … (Int 2) 40 … ultimately, I’d like to be medication-­‐free … the only real benefit they seem to have for me is to sedate me and then I find it even harder to function, I withdraw further … I’d like to have totally no self-­‐harming, no suicide attempts would be good … (Int 4) One interviewee spoke about hoping to get to a stage where they were able to do the things they wanted without worrying about other people’s reactions: … I would like to get to the point, and I don’t know if I ever will, where I really don’t care what anyone thinks about me, and it won’t stop me from going swimming, say, learning to swim or walking out with whatever I want to wear … (Int 1) The recovery journey Finally, interviewees also told us where they felt they were on their personal journey to recovery, with a strong sense of it being an open-­‐ended process: … I think that I still have a little way to go … (Int 2) … The list goes on. ‘Cos like I said, as soon as something is solved it then frees your mind up to tackle something else that comes along so that’s a bit of an open-­‐ended question, I can’t really answer that with any definitive sort of, this is what I need to do … (Int 5) … I haven’t reached the end, you see, I’m still on a journey … (Int 1) 41 4.3 Treatment and support We have divided this section into five themes: Medication; Specialist; Mainstream; Therapy; Support and give a more detailed explanation of these broad themes under each heading below. Our interview schedule (see Appendix) had a specific section on treatment, where we asked our interviewees about their experiences of different types of treatment and whether these had helped, set back or had no impact on their recovery. 4.3.1 Medication All interviewees discussed medication but one person (Interviewee 4) talked about it at more length, as reflected in the following section. The harmful and negative effects Most interviewees described their experiences of prescribed medication in a very negative way. This was characterised by accounts of different types of medication being prescribed -­‐ many of which were viewed as being of limited use – and the length of time that people had been taking them: … I don’t think all the medication I have, especially for depression, it don’t have the impact as it should do … (Int 6) … medication-­‐wise … I’ve tried various, well, three: prozac I tried initially didn’t seem to help … what was it, venlafaxine? I tried that for a bit and couldn’t get on with the side-­‐effects but I’ve been on citalopram for five years now … (Int 3) Medication was not seen as helpful when used in isolation and one interviewee felt it was actively harmful as it stopped them from being able to think clearly or deal with their feelings as a result of being so heavily sedated: ... I remember I was [on the ward] and [the doctor] said chlorpromazine would be good for me and I think the only objective was to sedate me to the point where I didn’t have the energy to self-­‐harm or make suicidal gestures or anything like that. I don’t think they thought they were treating some imbalance in the neuro-­‐transmitters or some dopamine depletion, the objective was to turn me into a zombie …. And it worked … I couldn’t be bothered to write suicide notes and research methods on the internet and join euthanasia societies … (Int 4) 42 The same person described the disturbing side-­‐effects of medication which they felt hampered their efforts at recovery: … I developed Parkinsonism-­‐type syndromes and I’d ballooned to sixteen and a half stone or something and I’m only little, you know, so that’s a lot of weight to carry … I had tremors and I just dribbled and I couldn’t engage people in conversation … (Int 4) A note of caution Interviewees also described other instances where they felt they had received inadequate support and advice, both around taking medication and cutting down on medication: … I found cipramil and citalopram, I was on that for nearly a year and a half, did nothing for me and every time I kept going back to the doctor they kept going: ‘just two more weeks, two more weeks’ and it got to a year and a half and I was still being told: ‘two more weeks’ and I decided to come off of that completely … (Int 5) … I’ve been taking medication for many, nearly thirty years probably and only this April they tell me that I’ve got personality disorder … (Int 6) … my psychiatrist stopped my olanzapine, he did it very quickly and then he was pulled away and I wasn’t able to feed back … and I actually became very psychotic and for the first time I thought I was a danger to other people as well as myself. I started having very sort of violent ideations and fantasies and things which I’ve never had before … I’ve never been involved in violence or anything … and I think it was simply the abrupt withdrawal of … olanzapine … (Int 4) One person told us about an instance where they had misused prescribed medication which led to them being hospitalised in intensive care: … my last serious attempt was last summer and I took 250 olanzapine and I stockpiled a whole lot of medication and … managed to coerce my psychiatrist into giving me amitriptyline and I took an awful lot of that and had heart arrhythmias and liver failure and was in intensive care for about five or six days … (Int 4) Good practice and effectiveness Interviewees also described examples of good practice and knowledge shown by the medical profession and the positive role medication can play in the treatment of personality disorders. Often, appropriate and supportive intervention by the 43 medical profession in the medication context can play an important part in supporting an individual’s recovery: … my psychiatrist was absolutely shocked at the amount of medication I was on … he said: ‘I don’t think this is beneficial for you and the NICE guidelines stipulate that medication is of limited benefit to people with pd’ ... he went about a gradual reduction in my medication … it was a difficult time … but then it sort of stabilised … I’m taking like 70% less meds than I was a year ago and that’s just allowed me to think clearly and to be more engaged and involved in my own recovery … another brilliant thing, they had medication management, we had a qualified psychiatric nurse who’d come in and just talk to us about side-­‐effects … it was just invaluable and I really miss that … (Int 4) Another interviewee described the benefits of medication whilst acknowledging its effectiveness when used with therapeutic interventions: … but eventually I was put on mirtazepine, which for me has worked wonders, it really has but doesn’t work on its own as we all know drug therapy and talking therapies and all that, they have to all be done together … (Int 5) The role of medication in recovery From what interviewees told us, it is clear that medication does have an important role to play in recovery but that this can vary enormously from one person to another. For some people, it was about taking the right dosage at the right time and exercising personal responsibility around taking medication appropriately: [talking about what has helped recovery] … I suppose I take my medication now, to the plan … (Int 2) For others, it was about developing insight into the positive role that medication can play in recovery when used in conjunction with psychological therapy: … I didn’t want to accept that I couldn’t just medicate myself better but now I have and in terms of … my approach to recovery and what treatment means, I know that it doesn’t lie in medication, it lies in psychological therapy ... reduction in medication was really important … (Int 4) And for yet others, it was about accepting that medication is, in some circumstances, necessary in maintaining a consistent sense of recovery and well-­‐being: ... maybe at some point I will be able to reduce it or to stop it completely, I don’t know at this stage … I don’t like being on it particularly but I think it does help. I would be in a much lower place, I think, definitely … (Int 3) 44 … keep taking the medication even though I might feel better because I know that it doesn’t last for a sustained amount of time and I might feel well enough to not take it that week but next week I haven’t built it up in my system enough … (Int 5) 4.3.2 Specialist This theme focuses on our interviewees’ experiences of a peer support group which they all attended and its impact on their recovery and well-­‐being. It also includes people’s experiences of other specialist personality disorders services. Peer support group: a safe and relaxed environment Interviewees told us about the relaxed environment of the group which had a beneficial effect on how they felt when they were there. Of particular importance were the feelings of safety and that it was a place where they felt they could be themselves without being judged and to which they belonged: … I’ve been going to [the group] for three years … supports you, keeps you where you are, makes sure you’re safe … (Int 6) … it’s informal, you can have tea and coffee, there’s artwork from some of the service users … they have comfy chairs … It feels much more like a living room, it’s much more informal and it affects the way people relate to each other. They’re more relaxed, they’re more open … people disclose things more freely … (Int 4) … is a place that I can go and I can feel so comfortable that I can just be myself … they understand me, I don’t have to hide anything, I don’t have to pretend that I’m well because it makes them feel more comfortable about being around me … it is incredibly empowering … (Int 5) … it is very important to me, ‘cos I feel that I belong … (Int 3) … knowing that I have got somewhere safe to go, without being judged … (Int 2) Peer support group: a lifeline Many interviewees attested to the importance of the group in terms of support and providing a lifeline: … it has kept me alive, I think, if I didn’t have [the group] for the last 3 years … I might not have been here today … (Int 6) 45 … it’s helped me … stop isolating myself, it’s made me realise I am not alone and there is help out there, and that people do relate ... to the way I feel … (Int 2) … but then I was introduced to [the group] … it was the anniversary of my father dying when I started and I got so much support from people, facilitators as well as friends I made and I don’t think I would have got through that, to be honest … (Int 3) Peer support group: being with others Interviewees told us about the huge benefits they had derived from belonging to a group where others experienced the same difficulties and feelings. This gave them the opportunity to share experiences, learn from others and offer support: … I remember first starting and being absolutely shocked by how many people knew exactly how I was feeling and I don’t have to explain it to them … if I’m trying to explain to someone in normal society that I found the bus journey pretty difficult they’d just go: ‘What? What d’ya mean? You just got on a bus, didn’t you? What’s the matter with you?’ Yeah, whereas in [the group] I just go: ‘oh the journey’ and everyone’s like: ‘oh god, I know’ … (Int 5) … knowing that I can go there, I can help other people, that helps me … (Int 3) … I go into the group now and there are people … I can’t fix their problems but I really understand what it’s like to feel unsupported and that nobody understands you and that no one is there … (Int 1) This learning experience often led to people being able to reassess their self-­‐harming or destructive behaviours after realising the impact it could have on others. Witnessing others’ behaviour also helped them to view their own differently: … when I was really in my suicidal phase it was all I’d talk about and plan and think … and I’d go in and I’d have cuts all over my arms . And it was only when a woman … got really angry and I couldn’t understand it and I didn’t realise that this must have a massive impact on other people … recognising how my behaviours influence other people … it’s been really good getting peer support … (Int 4) … a lot of it has been from watching people in [the group] doing very self-­‐
destructive things and giving in to their impulses and just going: ‘oh well, fuck it, I’ll do it ‘cos I wanna do it’ and then sitting there a couple of weeks later and going: ‘oh, it’s all shit’. So I got to recognise that that’s not really the right way to go … (Int 5) 46 However, learning from others did not just include witnessing destructive behaviour: interviewees also told us about feeling inspired in their own recovery by the progress of others: … one particular person … she’s come such a long way in her life, she’s such an inspiration to me … (Int 3) … there are people who I met in [the group] two and a half years ago and … they come to [the group] and they’re holding down full-­‐time jobs … or they’re back in education … that’s one of the benefits of sustained engagement I think. You get a better perspective of people’s recovery … that does give you hope ... (Int 4) Peer support group: social contact Interviewees told us how important the group was in terms of socialising and enjoying being with others and sharing social activities. It was also viewed as a route to wider social contact, helping to combat feelings of isolation: … going to [the group], gets me out a couple of times a week … (Int 2) … go and do something normal, go and have a coffee … something that just is not possible before … that’s really made a difference, is being able to socialise … It’s so simple. You’re not isolated anymore, I have friends, I can meet up with people … (Int 5) … ‘Cos it’s for me, it’s a social thing as well, I like so many people that go … (Int 3) Some people talked about the importance of being able to participate in social activities which did not revolve around behaviours such as drinking which could trigger off their own destructive behaviours: … what’s great about [the group] and the activities they do is that … there’s no alcohol … especially with my peer group, most social activities revolved around drinking or drugs … you’re in a safe environment … there are positive beneficial activities … going out for walks … I went bowling the other day … nice things which build your confidence but also there’s no opportunity for misadventure … which you would find perhaps with external friendships or relationships … (Int 4) Peer support group: structure and flexibility One of the main differences between mainstream services and the peer support group is its open-­‐ended structure and self-­‐referral process. Interviewees spoke 47 about the importance of a long-­‐term service which allowed them flexibility as well as structure and consistency: … what’s been incredibly helpful is that they never give up on you … ‘Cos sometimes I become a complete recluse for, like, six months at a time … but they don’t give up … I’ll get a letter and … it just says: ‘oh, you know, we’re thinking about you in group and you’re most welcome to come back any time you want’ and they don’t close the door to anyone which is quite unique … so I value that immensely … (Int 4) … when the lady gave me [the group] pamphlet it was up to me then to respond … I actually responded straightaway … I will do things if there’s someone there to help me … (Int 6) … just knowing that it’s there if you want to go and if you don’t fancy it one week you can skip a week or skip a group and people in my experience are always pleased to see you when you do come back … (Int 3) People also told us about the benefits of having a structure to each meeting and the importance of having a crisis plan: … it’s the structure of the group … nothing’s kept behind closed doors … It just helps me to sort of recognise things … you’re given the opportunity to sit there at the end of it and say whether or not you’re having any difficulties with things and there’s a genuine care from your peers to help you … there doesn’t seem to be that amount of care with one-­‐to-­‐one … (Int 5) [talking about a crisis plan] … they have papers … where you address your problems and then you try and seek out ways … which might help you get through those times … and also, you can sometimes give feedback to other people with similar problems … (Int 1) Peer support group: education and resources One interviewee told us about the peer support group being a useful source of information, where they could get support with benefits and other resources: … there’s also literally a filing cabinet full of resources that you don’t get told about at all … resources that I could tap into at different times in my life … comes up here … three times a week and helps people out with their forms … I didn’t know that before I started [the group] … that has helped me enormously because I haven’t had to sit there and struggle on through it … (Int 5) 48 Others found the group gave them the opportunity to learn more about their condition and identify with it: … I was actually given [the group] pamphlet three years ago when I was attending anxiety management course, stress course. I read though it, although I didn’t know at the time what personality problem was but when you read through the different categories, depression, suicidal, you fall into that category … when I was told I’ve got personality disorder, being in [the group] for two and a half years then or so I’d learned a lot about it … (Int 6) ... for many years, well I didn’t know what personality disorder was. And really it was going to [the group], sort of made that connection then and I read up about it and I could relate … (Int 3) Peer support group: professional and supportive staff Interviewees found the approach of the staff at the peer support group different from other services they had experienced. A more relaxed and friendly approach helped to foster ease and trust: … I think the approach of … the staff is, it’s still professional but it’s slightly more personal … there’s also a little bit more empathy, a little bit more understanding … they disclose a tiny bit more about themselves and it feels less artificial than when you speak to your social worker, your psychiatrist … (Int 4) … in a good way, staff will support you as well and the more support you get I think the better it does make one feel, most of the time … they are there to help us and they will encourage people to do different things … (Int 6) Peer support group: difficulties being with others Although all interviewees described positive benefits that being in a group with their peers brought, some told us of the times when they found it difficult to cope with group dynamics: … I have been in difficult groups there but I think I’m beginning to learn to, I think it’s important, if you’re going to do any work in any setting like that is to stay in it and try and sort it out within the group … (Int 1) … I remember when I first started at [the group] I was really nervous and didn’t think I was going to be able to cope with it but I surprised myself … But even now I still have times where I do feel anxiety in the group, I mean there was one incident happened where I just couldn’t make myself heard … and I was just getting so worked up and I said to [name] in the end: ‘I need to talk!’ … Felt a bit of a twit but I feel I can do that in that group … (Int 3) 49 … Occasionally I’ll take some time out … because … a thought will go round and round and round my head and sometimes I can’t handle being a room, being in a room full of people that has the same thing going on … (Int 5) Interviewees also told us about the difficulties they experienced when others were struggling with feelings and behaviours: … I know I can be like this, they can be quite taxing and difficult people to be around ... (Int 4) … it’s been detrimental to me in a couple of respects … someone disclosed something to me last year which caused me lots of problems in the group and still can do … so there is the element of trusting people … (Int 3) At times this had the effect of people isolating themselves or leaving the group: … I know people who have left as well because they’ve come across those, that hostility sometimes with people there when they get stuck into whatever’s going on … (Int 1) … I suppose there are so many different personalities going around in there … Some can be ready to attack you all the time … some people go there and they have obviously woken a bad day and instead of owning their behaviour, looking at themselves, what they are trying to do is, put their behaviour onto somebody else and let their anger out … and when that happens, I find myself isolating myself again … (Int 2) Peer support group: feeling unsafe The difficulties people described above led to them sometimes questioning whether the boundaries of the group were containing enough to ensure their safety. As much as there were times when people valued the contributions of others, there were also instances when a couple of the interviewees felt the need for staff to be more proactive in containing these: I know that some people do go there just to let their anger out on other people … we need to start addressing what’s going on there because, otherwise, people who’ve come there for help, or because they wanna be there, they end up leaving feeling worse … the other week, someone got really angry, picked up a cup and smashed it off the wall that is not a safe environment for people to be in … (Int 2) … sometimes I feel in … [the group] that the facilitators don’t exercise enough control and there have been instances where service users say things which can be overtly threatening or indirectly threatening or almost offensive … occasionally I’ve felt threatened … (Int 4) 50 It seems there is sometimes a delicate line to be trod between allowing people to express their feelings freely and keeping the group feeling safe for everybody: … it’s not an exact science and if you restrict what people say and their freedom to speak then people won’t come. And they won’t value it … and then you’ve also got to make sure other people are comfortable and don’t feel threatened because that then might restrict them or discourage them from engaging … or censor what they say … (Int 4) Peer support group: community environments Although many interviewees talked about the benefits of holding the group in the community, some found this a potential barrier to attending: … there’s a group in [area] and I don’t like going to [area] for any reason … I personally don’t like it there … (Int 5) … [the group] has moved to a better place now. Before it was in a church thing, it was like the Exorcist, you’d go in and you’d walk across this big hall and wait for it to go dindindin … it was just a joke. But now, it’s quite nice, it is a lovely place … (Int 2) Other specialist personality disorders services: intensive and focused support Two of our interviewees told us about other specialist personality disorders services they had experienced. They valued the intensive support these programmes could offer: … the pd service does give that intensive support, the ability to phone somebody if you’re having problems during the day and get some feedback … (Int 4) One interviewee valued the opportunity to be involved in a detox treatment facility which also recognised the personality disorders aspect and provided support for it: … it’s not just a detox … afterwards I’m getting aftercare at the drug and alcohol foundation … the group that I’ll be joining is specifically for people with pd … So that’s really good … obviously if detox is not enough … you need that backup then and how to start living without it … these are people that will understand and, and will hopefully be able to help and advise … (Int 3) Other specialist personality disorders services: experienced staff One person drew attention to the benefit of having highly skilled and trained staff attached to specialist services and drew a contrast to their experiences of staff in mainstream services: 51 … I think instead an empathetic approach where they actually take the time to inquire … I think this is the difference between someone highly trained and highly skilled at their job and someone less so is when they look at the underpinning or the underlying emotion or the catalyst for something that precipitated an emotional state … the two approaches can be characterised in the following way: sitting down with me and saying: ‘what were you feeling before you did that, what were you hoping to achieve?’ and going: ‘here’s a lorazepam, go and sit in the corner’ … (Int 4) 4.3.3 Mainstream Some positive experiences Interviewees told us about their experiences of services within mainstream mental health (by this definition, we mean non-­‐specific personality disorders services and treatments offered by mental health NHS Trusts and other statutory services). Positive experiences ranged from being treated by a Community Mental Health Team (CMHT), a Home Treatment Team and in-­‐patient care: … the Home Treatment Team … They used to be fantastic, there were some really good members of staff who when I was in difficulty would come out and see me at home and I couldn’t get to see my psychiatrist and they’d support me and manage my medication for me and just take a lot of burden off my parents who were my primary carers … my recovery worker … she was obviously highly trained, she said: ‘you know, it’s going to be a graded exposure, I’m not going to take you door-­‐to-­‐door for fourteen weeks for the course, we’re going to do three weeks door-­‐to-­‐door and then I’m going to meet you at [train station], then I’ll meet you at [place] and then eventually I’ll phone you when you’re up in the morning to make sure you get your sorry arse out of bed and get there’ … (Int 4) … first of all I went voluntary into [hospital] for seven days, and I ended up getting kept seven weeks, which I suppose … was a blessing … I’ve got a good CMHT, I get on really well with them, they really helped … listened to me and not judge me … (Int 2) … it really was getting into the mental health service and then being guided towards sort of this point in time … by professional people … (Int 3) Inadequate resources and closure of services However, as well as some positive experiences, many people also told us about encounters with mainstream services which did not feel adequate for their needs and which in some cases they felt hampered their recovery: 52 … what else is there? I mean, unless somebody puts me in touch with something else … unless I have a CPN and I see a doctor every month and I take some tablets, what other interaction will I have? I won’t have any … interaction that is meaningful … (Int 1) … there have been times when it would have been really appropriate for me to have in-­‐patient care and it just wasn’t available … that’s slowed my recovery and been potentially very dangerous for me … (Int 4) Other interviewees told us about the effect on them of the closure of an entire department: … they closed down the entire art department here … I haven’t given up trying to find another way to get a bit more recovery but … it’s had a knock-­‐on effect on my confidence in services … it’s about having consistency and not having, literally, the rug pulled out from underneath you … (Int 5) Another person questioned the move towards personalisation and the closure of day centres which had had the effect on them of further isolation: … they’ve cut back on a lot of things like day centres, [day centre] closed … it’s put me back a bit … I found myself even more isolated … there’s now self-­‐
directed support, where they give you a big chunk of money to go and do things … I would much rather have somewhere where I could go during the day and talk to other patients and have a cup of tea and a cigarette … (Int 4) Unease with professionals and the system: feeling disempowered Many interviewees told us about difficult situations they had encountered with some medical professionals. Sometimes this centred on not feeling listened to or not being treated well: … I was told to shut up and … it did affect me you know … it kept me away from going there. And I felt like shit, I felt like a child, being dictated to … (Int 2) … I filed about three different requests for a change in psychiatrists and they were just ignored … the advocate was absolutely brilliant and all it took was one carefully worded letter and I had a new psychiatrist within seven days … (Int 4) People also talked about basic human interactions having a huge impact on how they felt and what they were able to disclose: 53 … bare essentials, like treating you like a human being … what unfortunately a lot of professionals don’t recognise is that that simple thing can impact on all these major things … (Int 5) … when I went into psychiatric treatment I was never able to disclose how I felt because it was such a need for me to retain my dignity in some way … (Int 1) Feeling abandoned or rejected by mainstream services People also talked about their struggles to access mainstream services and the feelings of abandonment and hopelessness they experienced if they were not offered help: … I was told that ten years ago personality disorder was considered untreatable and they just turned you away … (Int 4) … this is where the abandoned word comes in ‘cos I was just pushed out and I’d no aftercare, nothing … (Int 6) Often this resulted in them having to find services in the private sector which they had to pay for themselves: … I’m getting private counselling which I pay for myself because … when I was discharged from the day centre I no longer come under the CMHT umbrella … (Int 6) … I also didn’t find when I went to see anyone that I got any particularly useful help. I got to see people to talk to every now and again but most of my life at that time I was feeling that I wasn’t going to survive … I had to go on the internet and seek out someone myself and go and see them … (Int 1) … they offered me twelve sessions of counselling to try and get through twenty four years of crap … unfortunately the mental health services at that time could not meet my needs. So I had to seek it elsewhere … (Int 5) Discrimination within the system Interviewees told us about their experiences of receiving treatment within mainstream services where staff may not be knowledgeable or trained adequately enough in treating personality disorders. This at times had resulted in them being treated in a less than satisfactory way: … I have found that I’ve been treated a bit like a number, not as an individual, not as a person with feelings and emotions … like a case study … (Int 5) 54 … my experience has been that sometimes staff, especially when they know you’ve got personality disorder have very little patience for you … they sometimes treat you with a distance which goes beyond professional boundaries, it borders on contempt and that can be very alienating and very upsetting … I remember I was in [the ward] and I’d extensive injuries to my leg and … they were indignant and really hacked off and they just gave me a mop and said: ‘clean that up’ and then took all my razors away and just walked away … (Int 4) One person recounted a situation where a medical professional had warned them about how contact with services could lead to discrimination: … one doctor … that I saw was saying: ‘well, there’s no problem with it’ and the other one was saying to me: ‘well, you know, you will be stigmatised’ … you’re almost being told: ‘don’t seek this help because you’re actually gonna put yourself into a very negative situation’ … (Int 1) Treatment at the wrong time However, some interviewees also told us that they had not been able to make use of some treatments because of their internal difficulties. These treatments were experienced as not helpful when people felt they had not been in the right state of mind or at the right stage in their recovery, or because they were experiencing high levels of anxiety: ... I did that anxiety, stress management course three years ago … when you’re actually in it, it works … but when you’re not in it it’s difficult to do anything at home … I can’t do much on my own … (Int 6) … I had anger management … before I stopped drinking and drugging … I think that’s probably why it didn’t have no positive … I was totally off my head at the time … (Int 2) Environment Some of our interviewees struggled with the physical environment of mainstream services. This could range from a sterile and impersonal atmosphere to one of possible risk to personal safety: … there’s something about a hospital setting … it’s kind of sterile … it puts people on edge … just from my subjective viewpoint, it has a marked impact on people’s ability to benefit from the service being offered … (Int 4) … when the CMHT was in the old building, there’d be people up there drunk and … it was a nightmare but where it is now everything is changed so it’s quite pleasant to be up there, it’s clean … (Int 2) 55 4.3.4 Therapy Although therapeutic interventions form part of both mainstream services and specialist personality disorders services, all our interviewees talked in depth about their experiences of a range of therapies, to the extent where we felt that it merited a separate theme. Helpful therapeutic interventions All the interviewees had experienced some form of therapeutic intervention or treatment. This covered a wide range of therapies and most interviewees had positive things to say about the different kinds of therapy they had taken part in: … I found art therapy to be sensitive to my needs, it wasn’t invasive … I ended up opening up hugely … (Int 5) … I had a year’s psychotherapy … the therapist … was saying: ‘we can’t really help you any further unless you make this decision, either to manage it’ … I think it’s finding that belief in yourself … that’s where the therapy can help … (Int 3) [talking about art therapy] … it gives you insight into what you, in a way already know but that you’ve covered it all up … (Int 1) One person felt that it was important for the therapy to be tailored specifically to their needs: … therapy is definitely an integral part of any recovery for pd, definitely … I think having something specifically tailored for the disorder like mentalisation-­‐based therapy … has to be the right therapy for the right person … (Int 4) Interpersonal relationships determining success or failure Many interviewees felt that the relationship between the therapist and themselves was of crucial importance in determining how successful they felt the therapy had been for them: … the person I had for my CBT … I felt safe with her, I felt able to open up and express myself to her … if you’re talking about recovery … if … you’re not feeling able to open up … it’s very difficult to work with them and it’s difficult then to use what they’re saying to help you … (Int 1) … it’s a person to talk to, to tell how my life is going … he tries to encourage me to do little things, especially at home … (Int 6) 56 … my therapist worked with me rather than talking at me and trying to get me to a place before I was actually ready to get there … (Int 5) The interpersonal relationship between therapist and service user was sometimes viewed as more important than the type of therapy in relation to how successful it might be for people with lived experiences of personality disorders: … there’s the conceptualising and the theory and then there’s the interpersonal relationships ... if you don’t have a therapist who’s trained in dealing with someone with pd then on a personal level there’s going to be conflict and difficulty … the methodology might be effective but the interpersonal relationship has to be conducted properly … (Int 4) Many interviewees told us of instances where the relationship between the therapist and themselves had felt uneasy, unfulfilling and unequal and had left them questioning the value of therapy: … I used to come here to see somebody … on a one-­‐to-­‐one basis … and I used to sit and just talk …. it just became a session where I just let out my frustrations about the week and go home and really, it was somebody to talk at … if somebody is not giving anything of them … if they can’t even be warm or smile or anything, I found that is very hard to open up to them … (Int 1) … being forced to open my head up to someone who I barely know … it made me shut down, made me really withdraw … she was able to sit there and not have a conversation with me … I can’t work with that, I need to interact with people and I need to feel like I’m in an environment … where I’m safe … so that I can actually open up about it. If I don’t feel like that it will make me withdraw and it will make me very resentful … (Int 5) … I tried CBT … it just didn’t work … I think I made her uncomfortable … it just wasn’t appropriate … it was a waste of her time and a waste of my time … (Int 4) When therapy can be harmful Although we have described instances above where the interviewees felt they had derived benefit from therapy, most interviewees had also had some very negative experiences. It seems that the right kind of therapy at the right time for the individual is of crucial importance. If this is not achieved then the potential for damage to the individual is evident: … I was having one-­‐to-­‐one therapy … I was asking: ‘what is this therapy supposed to achieve? How does it work?’ and I was told: ‘why are you asking that question?’ so … I used to come out feeling very disempowered … I felt like 57 if I asked something, I wasn’t allowed to ask something so I felt very … childlike … (Int 1) … I find that someone fiddling with my head for fifty minutes … and this is how it felt to me, with no regard to how I was gonna be the next time … it was literally cracking open my skull, prodding it and then going: ‘alright, then, off you go’ and then I’ve gotta put my head back together again and try and put myself through that the next week and the next week … something like that can knock everything out … (Int 5) In some cases a negative experience of therapy can result in an individual either leaving treatment or deciding never to try it again: … I think mainly the psychotherapy, out of all the things that I have had, put me right back … I was going in this room, I was getting fired away with really personal questions and I came out … and couldn’t switch off, I would do overtime, and I would go home and I’d sit in my flat and everything was just there … it was doing more harm than good … No, I would never do it again. Never … (Int 2) … I did have a bit of group therapy … and that didn’t work, that just completely fell flat on its face, ‘cos I, one of the guys was hogging the limelight all the time and it was just really getting on my nerves and so I pulled out of that and then said could I try one-­‐to-­‐one instead … (Int 3) The challenges of therapy Interviewees described how difficult the therapeutic process could feel. This included feelings of hopelessness and vulnerability: … I think at one point during my psychotherapy I did think, I’m never going to change, this just isn’t working, there was so much temptation to stop going … the negativity takes over and you just think, what’s the point … (Int 3) … therapy … it’s hard work, isn’t it? And it’s painful … you go before this stranger and you give up every vestige of self-­‐reliance, privacy, autonomy that you’ve established and then break down all your barriers and expose yourself and that can be incredibly painful … (Int 4) … it’s like trying to turn around the way you think … and it’s trying to be strong like when you don’t want to do something and you have to force yourself to go out there … and face whatever it is is your demon and try and continue to do it … (Int 1) 58 Lack of access to therapy and cuts in services Some people told us it had sometimes taken many years for therapy to be offered to them, if at all: … psychotherapy wasn’t made available to me for many, many years … (Int 4) … recovery itself, if I’m not getting the medical help like some kind of therapy, psychotherapy … I think that would make a difference but if one isn’t getting any … (Int 6) One interviewee described the difficulties in getting access to particular kinds of therapy depending on where they were located: … Next one I have been referred to is DBT. I went to [place], had the assessment there … then they realised, because I wasn’t in the borough … and they don’t offer it to people in the borough, so I don’t know what’s going on there. The CMHT got sent a letter saying they might make an exception. But I didn’t get one, I have not heard back, so I don’t know … (Int 2) Other interviewees talked about the effect on them and others of the closure of therapeutic services: … I was finding art therapy really good but that’s been taken away from me now … they closed down the entire art department here … And I’ve met people in art therapy group that were really locked in their own minds and were terribly dependent upon that therapy … they didn’t have anything to replace it … (Int 5) [talking about art therapy] … I really wish I could have spent longer … but it’s no longer taking place, which I think is a real shame … (Int 1) 4.3.5 Support A lot of the interview data in our original Support theme document overlapped with the Specialist, Mainstream and Therapy themes. Therefore, for the purposes of this report, we decided to limit the Support theme to data which draws attention to the importance of support more generally for people in recovery, whether from family, friends, services or from other sources. The importance of support for recovery Many interviewees singled out support and encouragement as key ingredients in their recovery journey: [talking about important factors in recovery] ... I think it’s about having a good, readily available support … (Int 4) 59 … I really understand what it’s like to feel unsupported … getting better isn’t just about kindness or compassion or understanding or listening. Sometimes there obviously has to be medical intervention but medical intervention without any other support outside or from other people, I think people need friendship, they need somebody that they feel they can turn to that won’t necessarily turn away from them in disgust or anything or judge them … (Int 1) [talking about what is important for recovery] … support, yeah … I do need encouragement … (Int 6) Varying and flexible levels of support Interviewees also told us about the importance of different levels of support within services and getting the balance of support right, depending on where a person is with their difficulties and recovery at any given time. This support from services was described as being non-­‐judgemental, providing answers and explanations, being encouraging and enabling autonomy, independence and self-­‐reliance where possible: … I approve of the whole initiative to make people more self-­‐reliant … but I think it needs to be tempered with common sense and giving people just the support they need to ensure their health and well-­‐being but also giving them the freedom and the opportunity to develop independently, become more self-­‐reliant which is the key to hopefully reintegrate completely and leaving mental health services and health services behind you … (Int 4) … When someone’s feeling good they want to take control and they want to make the most out of how they’re feeling, and having the opportunity to be able to do that helps someone move a bit more forward in their recovery, even though they may lapse back within a couple of weeks, they can still get back up to where they have lapsed from … (Int 2) One interviewee described how getting the balance right between providing support and encouraging independence had helped them make real steps towards recovery: … I was in this supported housing with a support worker and she recognised that so she would help me but on other days she’d say: ‘no, I think you’ve gotta do this yourself’ and whilst I would sit there and go: ‘bloody hell!’ and be all: ’god, it’s gonna be really hard work’ it actually really helped me. So there has to be a good balance of helping people and letting people walk on their own … (Int 5) 60 However, the same person also stressed how important it was to communicate the reasons why support may be gradually withdrawn: … there has to be that communication there ... my support worker she was telling me why she wasn’t helping me … whereas if someone just withdraws it and doesn’t tell you why, you feel abandoned … (Int 5) In other instances, interviewees described the need for services to provide more support at the times when people felt they were unable to make decisions for themselves: … when I am not feeling well … it’s hard work, you can’t see properly, you can’t think properly … It’s having the help and sometimes I have had people make decisions for me because I’ve not been able to make my own decisions … (Int 2) Another person told us how much they valued being guided and supported in making treatment choices: … a lot of the time people come into treatment they don’t know what treatment is best for them … I got asked that … I think it’s hard, a lot of the time we don’t know what’s best for us and that’s why, where we need the guidance, to find the right treatment … (Int 3) 61 4.4 The interview experience 4.4.1 The interview This final section and theme concerns data derived from the last section of our interview schedule, where we asked interviewees for their thoughts and feelings about the interview itself and how relevant they felt the questions had been to them. We also wanted to find out how people felt being interviewed by a service user researcher and a clinical researcher (in this case, a specialist trainee psychiatrist) and whether they felt this had made any difference to the way they had answered the questions we asked them. Feelings about the interview Interviewees were generally positive about the interview: … best interview I’ve ever had, definitely, and I’ve done a few. Really, really carefully directed and insightful … (Int 4) … I think it’s been a good interview, very intense, lots and lots of questions, which is good … I was ok with it. Having that little break in between helped … (Int 6) … actually, I think I’ve said everything which is a bit rare for me, I’ve usually got more to say on everything … (Int 5) One person told us they felt the interview had given them the opportunity to talk about things they had not previously been able to address: … I think just the way you’ve made me feel welcome has been really cool and just put me at ease … it’s been a bit of a release for me as well, being able to talk to you, especially carrying what I’ve carried and I haven’t spoken to my mum or anybody about how I’ve been feeling in the past few days so actually it has been a bit of a release so I appreciate that … (Int 3) Interviewees also talked about the importance of listening to the service user voice: … I think sometimes it’s good to be asked … I personally listen more to those that have been there, than have read from the book. That’s no disrespect to anybody. You know, whatever you say how I am feeling, if you’ve not been in my shoes, it’s like, walk a mile in my shoes, and tell me how I am feeling as such … (Int 2) 62 Feelings about being interviewed by a service user researcher Interviewees again felt generally positive about being interviewed by a service user researcher who themselves had a lived experience of personality disorder. Some people felt inspired and encouraged: … I found it really inspiring to meet you because it’s to see how high functioning you are and how well you’re doing, it’s really cool, gives me a bit of hope … (Int 4) … it shows that [name] has progressed … which is good and she’s doing a good job at the moment, doing research … I could be doing that in four years’ time … (Int 6) … what first struck me was, you’re living a normal life and that’s where I wanna be so it’s really encouraging … (Int 5) Interviewees also told us that talking to another service user made them feel more at ease and able to talk more freely. They felt that the service user researcher was able to identify more readily with how they felt: … an ex-­‐service user, it just sort of brings down all my barriers so I think it’s allowed me to talk more freely and feel much more comfortable … (Int 4) … you could question your own thinking, no one understands me, because sometimes I can’t understand myself, so how can someone else understand me, but it does help having someone there that can identify a lot with it … (Int 2) Some people also felt it was important for service users to be involved in research: … Cool. I’m very comfortable with it, I think it’s good … and I hope this happens more often, I think your experience is very valuable, especially in research … (Int 3) Feelings about being interviewed by a clinical researcher Interviewees were again generally positive when asked how they felt being interviewed by a clinical researcher. However, one person described feelings of anxiety and of being put somewhat on guard: … it puts my barriers up a little bit … I suppose it’s reassuring that you obviously have a interest and experience in the field … so it’s better than seeing just a general doctor but it’s still slight anxiety … (Int 4) 63 Conversely, other people told us they valued being interviewed by someone with medical experience and felt undaunted by it: … I thought when I heard that you were coming, you are a doctor, it’s good to have someone with medical experience … (Int 6) … I don’t feel daunted by it, actually, whereas perhaps some people will, I don’t … (Int 3) Did interviewees answer the questions differently? Some interviewees felt it did not matter who asked them questions: they would have replied in the same way regardless: … No, I don’t think so, I honestly think I’ve been as honest as I can today … I’m not aware of holding things back … (Int 1) … I think I have been as honest as I can with both of you. I probably go away thinking, I should have said this ... that. But you know, I have answered this as best as I can … (Int 2) Other people were uncertain about whether they would have answered differently: … I don’t think so, no … (Int 6) … Possibly, but possibly not at the same time … (Int 3) Some interviewees felt that it did make a difference who asked the questions, although one was unsure what this was due to: … Probably less honestly, I think … not that I’d be disingenuous or intentionally dishonest but … I would censor what I’d said a little bit more I think … (Int 4) … possibly because of the person that you are rather than what your background is or anything like that … I haven’t thought: ‘ oh, I don’t want to speak to you about things’ … Quite the opposite … (Int 5) 64 5. REFLECTIONS ON THE RESEARCH PROCESS 5.1 Interviewees’ reflections on the interviews On the whole interviewees told us that the experience of being interviewed was a positive one; that they felt able to talk freely about their experiences and in some cases spoke more openly about difficult issues than they usually would. For some interviewees there was a degree of ambivalence about being interviewed by a clinical researcher, but they did not state with any certainty that the identity of the researcher had constrained what they had felt able to talk about in the interview. Two of the interviewees did attribute feeling able to talk more freely than usual to being asked questions by a service user researcher. Interviewees also spoke about being inspired and encouraged by the service user researcher, using some of the language – around hope and living a ‘normal life’ – that had been used in the interviews in discussing the concept of recovery. On balance it would seem that interviewees valued being interviewed by researchers who were committed to listening to and understanding their experiences of personality disorders – both clinical researcher and service user researcher – and that, together, the researchers had made them feel comfortable enough to talk openly about sometimes difficult experiences. We were satisfied that our approach was effective in eliciting data that reflected people’s views, feelings and experiences of personality disorders and recovery. 5.2 Researchers’ reflections on the research process From the outset of the project, as a team, we felt that it was important that the research process should be informed by the different experiences of the different team members; as clinician, service user and academic. We designed the research project to try and ensure that this was the case at all stages of the process. We had limited new input into the interview schedule having inherited it from a previous project, but the service user researcher and health services researcher had both been core members of the team that had developed the schedule in a similarly collaborative way. The clinical researcher and service user researcher worked very closely and intensively together at the interview stage of this project, preparing for interviews beforehand, carrying out the interviews and then debriefing after each interview. They felt that not only had they worked well together at this stage and developed a good understanding of each others’ approach while interviewing, but also that the follow-­‐up questions they asked during interviews – as lead and supporting interviewer – both reflected their different backgrounds and were complementary. We felt that a much broader and more comprehensive range of data was collected as a result of the joint interviewing approach. 65 In the analysis stage of the project we worked hard to ensure that our different perspectives were captured in the interpretation of data. This resulted in a complex and extended analysis process that was very demanding in terms of time and delayed the writing up of our findings. In particular, the decisions that all researchers should undertake a preliminary analysis of the data, and then that both the service user researcher and clinical researcher should produce interpretive documents for most of our themes lengthened the process, necessitating additional stages where we had to integrate our different interpretations. We did this because earlier research done by members of the team had clearly indicated that service user involvement in research had as much, if not more impact on the research process at the analysis stage than it did at the interview stage of a project (Gillard, Borschmann, Turner et al 2010) and that we might lose valuable insight into the data if we had distributed, rather than duplicated analysis tasks at key, formative stages in the process. As part of this approach we held a number of intensive team meetings where we discussed in depth the similarities and differences in our interpretations. It was through these discussions that the integrated analytical narrative of personality disorders and recovery presented above emerged. The good working relationship and understanding between members of the team that developed as the project progressed facilitated this. Because of the investment of time and energy by the team in this joint working, in the later stages of the analysis and while writing up we were more confident that we would remain faithful to our joint interpretation working separately, rather than have to complete each task in duplicate or triplicate. As a result the service user researcher led on writing up all the findings and wrote up the third section of the analysis – Treatment and support – without our going through the extended process of producing separate interpretations first and then integrating our analyses. The service user researcher also produced the first draft of the report’s conclusion, again confident that what she wrote was grounded in our shared understandings that had developed over the lifetime of the project. 5.3 How were our findings shaped by the research process? To say that we collected a greater range of data and produced a richer analysis as a result of our collaborative approach would, we think, understate the impact of the research process on the findings. The investment in time and energy on working together, and the relationships that developed within the team as a result, we feel moved us beyond bringing together different perspectives and interpretations on personality disorders and recovery. We felt that we began to create understandings of personality disorders and recovery that integrated both the lived experience of personality disorders, and the challenges and potentials of providing support and treatment for people with personality disorders through the delivery of services. 66 For example, early in the analysis process the service user researcher suggested strongly that we would not be able to understand personality disorders and recovery without first grasping the powerful feelings of tension between internal and external worlds that, for many, characterise the lived experience of personality disorders. This struck a chord with the emphasis placed on supporting the difficulties in negotiating relationships highlighted by the clinical researcher. Integrating these interpretive standpoints shaped much of our analysis that followed, and led to the conclusions below. Without our careful, complex, lengthy and, at times, difficult research process we are not sure we would have captured either what is distinctive about understanding personality disorders and recovery, or be able to valuably reflect on how personality disorders services should respond to the recovery agenda. Finally, we would like to add a note of personal reflection regarding the interviews and interview participants. Despite hearing about the many difficulties and struggles associated with the lived experience of personality disorders, we were all left with a lasting impression of the determination, strengths and capabilities displayed by the interviewees as they described their efforts to deal with their difficulties and their journeys of recovery. 67 6. CONCLUSIONS AND RECOMMENDATIONS We set out in this study to explore understandings of recovery from the perspective of people with lived experiences of personality disorders, and to explore the extent to which understandings of recovery can usefully inform the development of personality disorders services. It was clear from our interviews that personal, individualised understandings of recovery did have relevance for our interviewees, in the context of their lived experiences of personality disorders. In addition, some of the concepts that comprise recovery as described in mainstream mental health recovery literature – especially those very personal concepts that relate to the self – were also relevant for our interviewees. We also found that, because of the particular nature of the lived experience of personality disorders – the feelings of tension between internal and external worlds that interviewees described to us – caution should be taken when applying mainstream understandings of mental health and recovery to the development of personality disorders services. Key aspects of the ‘mainstream’ recovery journey – including important policy drivers such as social inclusion, employment and education – can be at odds with choices an individual might make to feel safe and achieve some stability in their lives. That is not to say that interviewees did not recognise the potential of, for example, increased social contact to make positive changes in their lives. Rather, these findings highlighted the importance of considered, specialised support for personality disorders and recovery, whether provided by dedicated personality disorders services or in mainstream mental health services. The term ‘recovery’ loses its usefulness to inform the development and improvement of personality disorders services if it is applied in an uncritical way. Service providers, including mental health NHS Trusts, should be prepared to revisit what they think they know about recovery before they begin to mandate, in response to policy, the recovery of people with lived experiences of personality disorders. Our specific conclusions are presented in three sections, reflecting our research findings, as follows: The lived experience of personality disorders •
We found that in order to understand recovery in the context of personality disorders we had to start by understanding the lived experiences of our interviewees. We feel it is vital to have this context and understanding when thinking about personality disorders and recovery. There is a lack of published research, including in-­‐depth qualitative research about the lived experience of personality disorders. We recommend more research is funded, undertaken and published in this area. 68 •
Our exploration of these lived experiences made us aware of the many difficulties our interviewees struggled with on a daily basis. The nature of these difficulties would seem to have a direct bearing on the potential for recovery as currently defined by mainstream thinking about mental health recovery. For example: difficulties with relationships and engaging in the outside world; not feeling ‘normal’ or not fitting in; periods of long isolation; perceiving the world as a hostile place; struggling with the dilemma of how much contact to have. These issues suggest that people with lived experiences of personality disorders might have particular problems relating to a mainstream approach to recovery that is predicated on increased social interaction (including employment and education) and prescribes the individual’s place and role in society. •
Our research suggested that a diagnosis of personality disorder/s -­‐ which appears to be based on a judgement of a set of behaviours which differs from the social or cultural ‘norm’ -­‐ has a range of social and care implications for people. In particular, how interviewees had received and understood their diagnosis had a direct bearing on their aspirations and expectations of recovery, often limiting their hopes. Where a diagnosis is given thoughtfully and informatively it can aid a person’s recovery in terms of offering increased understanding of the condition and what can help. Personality disorders and recovery •
All interviewees were able to envisage a form of recovery personally meaningful to them. While all accounts had some aspects in common, what was striking was that each understanding of recovery was highly individual to each interviewee. Understandings were individualised not only in terms of what constitutes recovery, but also where individuals felt they were in terms of their own recovery, how long it had taken to get there, what had got them there and how much they felt they were able to recover. Personal recovery was variously described in terms of changes to people’s behaviours, thoughts and feelings. Interviewees had found many strategies to effect these changes, and to continue and sustain them. •
Important elements of recovery in terms of the internal world included improvements to self-­‐esteem, self-­‐worth and the presence of hope, self-­‐
belief, self-­‐confidence and determination. Increased acceptance, self-­‐
awareness and insight facilitated these changes and were seen as important to personal recovery, allowing people to feel more confident about themselves and to experience a greater sense of empowerment and control over their lives. This acceptance and insight led in turn to being able to hold in mind a realistic sense and picture of recovery. 69 •
Social relationships are key to recovery, mediating the interaction between internal and external worlds. The potential for both negative and positive impacts characterised interviewees’ accounts of negotiating their relationships. Relationships with peers – other people with lived experiences of personality disorders – can often bridge the gap between the individual and wider society, enabling a gradual increase in social interaction. Relationships were important for fostering trust and combating isolation and self-­‐acceptance; all key issues for people with lived experiences of personality disorders. •
Relationships are also the platform where people’s experiences and perceptions of the external world as potentially hostile and harmful influences their interactions with others and therefore their ability to access and/or accept support from others. In the context of professional relationships it is therefore vital that this is considered in the design and provision of services and staff training. •
There was a marked ambivalence apparent in all interviewees’ accounts regarding society and the wider, external world: how much contact is healthy and helps recovery and how much can actually be harmful and hinder it. A choice to have limited contact with society in order to feel safe or achieve stability seems to be a common factor. Given the importance attached to increased social contact in the mainstream recovery literature, the particular challenges expressed here by interviewees of attempting to interact more with ‘normal society’ indicate that a great deal of thought must underlie any efforts to support increased social interaction through personality disorders services. •
Interviewees’ accounts make it clear that people encounter significant obstacles in their recovery, ranging from internal thoughts and feelings to their own behaviour, the behaviour of others and the pressures of society’s norms and expectations. Some of the choices that individuals might make in order to achieve stability in their lives appear to be at odds with mainstream mental health accounts of recovery journeys (especially with reference to increased social interaction). It was striking that some people felt that to pursue recovery meant putting their stability and mental health at risk. This sense of a constant struggle in recovery – the lack of a clearly defined recovery journey – has important implications for supporting recovery in personality disorders services. 70 •
Interviewees had clear goals for recovery and were aware of what they had already achieved and what they had yet to achieve, both in terms of changes to thoughts, feelings and behaviours and external changes such as increased contact with the outside world (employment, education). There was a real sense of recovery being an open-­‐ended journey, rather than a more simple process of reaching a finite goal. Treatment and support •
Medication was a problematic area, very often experienced as harmful and of limited use by interviewees. Issues were also raised around the appropriate prescribing of some medication for personality disorders. People acknowledged that medication could be helpful in recovery when used in conjunction with therapeutic interventions, and when prescribed by a professional with knowledge of personality disorders and the role of medication in treating personality disorders. •
Specialist personality disorders services were valued immensely by interviewees. The peer support groups which all interviewees attended were seen as a vital part of their recovery, with the potential to offer supported links into the wider world. However, these accounts also indicated the importance of considering safety and boundary issues in this sort of service. •
Accounts of using mainstream mental health services included some positive experiences, but also many negative experiences, ranging from a lack of skilled and trained staff to stretched resources and closure of services. The impacts of these experiences -­‐ reinforcing feelings of disempowerment, being rejected and discriminated against – have potentially detrimental impacts on recovery. •
Therapeutic interventions were seen as generally positive, especially creative therapies such as art therapy, although the interpersonal relationship with the therapist was seen as key in determining outcomes. Forms of psychotherapy in particular were singled out as having the potential to be harmful if the therapist did not engage in a meaningful relationship with the service user. •
On-­‐going and long-­‐term support with recovery was regarded as very important, whether provided informally by friends and family members, or through statutory services. It was important that people had access to different levels of support at different times, depending on where they were in their recovery. 71 REFERENCES Andresen R, Oades L and Caputi P (2003) ‘The experience of recovery from schizophrenia: towards an empirically validated stage model’. Australian and New Zealand Journal of Psychiatry 37: 586-­‐594. Anthony WA (1993) ‘Recovery from mental illness: the guiding vision of the mental health service system in the 1990s’. Psychosocial Rehabilitation Journal 16: 11–23. Bateman A & Fonagy P (2008) ‘8-­‐year follow-­‐up of patients treated for borderline personality disorder: mentalization-­‐based treatment versus treatment as usual’. American Journal of Psychology, 165(5): 631-­‐638. Brown W & Kandirikirira N (2006) ‘Recovering mental health in Scotland. Report on narrative investigation of mental health recovery’. Scottish Recovery Network. Copeland ME (1997) ‘Wellness recovery action plan’. Peach Press, West Dummerston, VT. Deegan P (1996) ‘Recovery as a journey of the heart’. Psychiatric Rehabilitation Journal 19(3): 91-­‐97. Department of Health (2001) ‘The journey to recovery—the government’s vision for mental health care’. Department of Health, London. Department of Health (2011) ‘No health without mental health: A cross-­‐government mental health outcomes strategy for people of all ages’. Department of Health, London. Dickey B & Ware NC (2008) ‘Therapeutic communities and mental health system reform’. Psychiatric Rehabilitation Journal, 32: 105-­‐109. Gillard S, Borschmann R, Turner K et al (2010) ‘What difference does it make? Finding evidence of the impact of mental health service user researchers on research into the experiences of detained psychiatric patients’. Health Expectations DOI: 10.1111/j.1369-­‐7625.2010.00596.x Lewis G & Appleby L (1988) ‘Personality disorder: the patients psychiatrists dislike’. British Journal of Psychiatry, 153: 44-­‐9. 72 Martyn D (2003) ‘Self Management. The experiences and views of self-­‐management of people with a diagnosis of schizophrenia’. Mental Health Foundation. NICE (2009) ‘Borderline Personality Disorder (BPD). Borderline Personality Disorder: treatment and management’. NICE Clinical Guideline 78. National Institute for Health and Clinical Excellence. NIMHE (2003) ‘Breaking the cycle of rejection: The Personality Disorder capabilities framework’. http://www.spn.org.uk/fileadmin/SPN_uploads/Documents/Papers/personali
tydisorders.pdf accessed 30 March 2010. Rethink (2010) ‘Getting back into the world: Reflections on lived experiences of recovery’. London, Rethink. Turton P, Demetriou A, Boland W, Gillard S, Kavuma, M et al (2011) ‘One size fits all: or horses for courses? Recovery-­‐based care in specialist mental health services’. Social Psychiatry and Psychiatric Epidemiology, 46(2): 127-­‐136. Tyrer P (2001) ‘Reading about: Personality disorder’. British Journal of Psychiatry, 179: 81-­‐84. Zanarini MC, Frankenburg FR, Reich, DB, Fitzmaurice G (2010) ‘Time to attainment of recovery from borderline personality disorder and stability of recovery: A 10-­‐
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667. 73 Appendix Developing an understanding of recovery for people with personality disorders living in the community: a pilot narrative study INTERVIEW SCHEDULE Introduction: •
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‘My name is __’. ‘I am __’ (let the other researcher introduce themselves). Highlight that one researcher has experience using mental health services, if applicable (again, let them do this themselves). Make sure interviewee is aware of what this means. Say that only one of us will be asking questions at any one time. ‘Thank you for participating today, this interview may last between one and two hours and you will be paid £20 for your time.’ ‘You are free to stop the interview at any time for any reason and you can also take a break at any time if you would like one.’ Go through consent procedure, addressing any questions participant may have. If person consents, ask them to sign the consent form. ‘As explained in the information sheet, we are carrying out this research project to understand what recovery means for people with personality disorders living in the community. We are particularly interested in your own personal views and experience; there are no right or wrong answers. Although some of the staff involved in the project may also work in your service, we would like to stress that our project is working separately from the service you are in. Nothing you say will be shared with the staff in your service unless we are concerned with regard to your safety or that of others, as discussed before. So please feel free to be as open and honest as you can.’ ‘If you feel distressed or anxious after the interview, staff in your service (with your consent) will be notified and you will be linked in with appropriate support.’ ‘We would like to tape record the interview so that we have an accurate record of what you say today – do we have your consent to do this?’ (turn audio equipment on). 74 Section 1A: Open section 1. •
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5. First of all, could you tell me what the word ‘recovery’ means for you personally? Prompts: Recovery can mean different things to different people. We are interested in what it means to you. How do you know if you or someone else is recovered or recovering? Note to Interviewer: if concept has no meaning to participant at the moment: Recovery can be a broad concept covering many different areas. Which areas do you think are relevant? What might it mean to you in the future? How might it apply to you? What is your understanding of why you are being treated in this service? Prompts: Please can you tell me in your own words what mental health problems or other difficulties you think you have? Note to Interviewer: if the participant is finding this difficult to answer: Why do you think you are here? In relation to the (use participant’s own words for describing mental health problems, or say “issues”) you have mentioned, how much progress in recovery do you feel you have made? What changes have there been so far? How have those changes come about? What else do you feel you have left to do? How do the changes you’ve been telling us about compare with your expectations of recovery? I would now like to ask you how you go about assessing where you are in your recovery. Firstly, what do you see as the signs of your recovery? If you have a bad day/patch, how does that affect your feelings about recovery? How would you go about judging the success of your recovery? How do the opinions of others relate to your assessment of your own recovery? I’d now like to ask about the factors that have contributed to your recovery. By this we mean anything that has been important to your recovery, or that you think is related to your recovery. 75 Firstly, what do you think are the factors that helped to start or trigger your recovery (if any)? • Secondly, what are the factors that help to support or sustain your recovery? • And are there any factors that have hindered or set back your recovery? • What factors in your recovery have been most important? Section 1B: Treatment I’d now like to ask about aspects of the treatment you have received in connection with the issues you talked about earlier. By ‘treatment’ we mean the different types of help you’ve had, both now and in the past. Note to Interviewer: if treatment has been covered in Q5, ask if there are any other aspects of treatment that have helped recovery. 6. What aspects of treatment, if any, have helped your recovery? Note to Interviewer: if no response to the above: • Can you think of any aspect of your treatment that has been, or is, helpful to you in your recovery? • Were there any treatments outside the service you are in (specify, eg, eating disorder) that you feel were particularly helpful? • Overall, which were the necessary parts of treatment in your opinion? 7. What aspects of the treatment you have received do you feel have had no impact upon your recovery? Note to Interviewer: redefine treatment if necessary. Prompts: • Which aspects of your treatment made no difference to your progress? • Are there any types of treatment you could have managed without? • Were there any types of treatment you felt were a waste of time? 8. What aspects of the treatment you have received have prevented or set back your recovery, if any? Prompts: • Were there any treatments you feel caused you harm? • Were there any treatments you felt got in the way of your recovery? • Were there any treatments you felt undid some of the progress that you had made? • In retrospect if you could make some changes to the treatments you have received, what would they be? •
76 Section 2: This second part of the interview is slightly different. There have been other studies that have asked people what recovery means to them. This research has identified certain areas that are seen as important in recovery. We may have covered some of these already; however, we would now like to ask you a few more questions relating to each of these specific areas. We will go through each point and if you feel that some of these things are not important then that’s ok, just tell us. The points that you think are important we may ask you to elaborate on. Notes to Interviewer: • In each case give examples to clarify what the broad concept means, where necessary. • We are interested in ways in which the participant believes these factors might affect recovery in the future, as well as ways in which each area has affected or is affecting recovery. • Use prompts only when the participant considers the factor to be important. 1. Do you think that a belief in yourself is important for recovery? Examples could include self-­‐confidence, self-­‐esteem and self-­‐praise. Prompts: • How do you think your view of yourself relates to your recovery, if at all? • Is developing a positive identity important for recovery? • Can you say a bit more about that? • Why do you think that’s important? 2. Is hope or knowing that recovery is possible important to you? Prompts: • Do you feel recovery is possible for you? • Can you say a bit more about that? • Why do you think that’s important? 3. Does having activities in life help in your recovery? Prompts: • Can you say a bit more about that? • Why do you think that’s important? 4. Does developing positive relationships with others help in recovery? Prompts: • Can you tell me about any ways in which positive and supportive relationships in your life contribute to your recovery, if at all? 77 5. 6. 7. •
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Is it important to your recovery to understand your illness? Prompts: Can you tell me how gaining understanding of your mental health problems and your difficulties plays a part in your recovery, if at all? Can you say a bit more about that? Why do you think that’s important? •
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Are there any things that you do to help you stay well? Examples could include; approaches you use to stay well, ways of coping to manage feelings. Prompts: Do you have any coping strategies? Or ways of coping to help you to stay well? Are there any approaches you use that could be helpful? Can you say a bit more about that? Why do you think that’s important? •
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Is being recognised and valued as a person important for recovery? Prompts: How does having your achievements recognised affect your recovery, if at all? Can you say a bit more about that? Why do you think that’s important? •
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Is being part of the wider community, outside of mental health services, important for you in recovery? Examples could include; having a social network, mainstream clubs and organisations, education and employment opportunities. Prompts: In what ways do you think these things have an effect on your recovery? Can you say a bit more about that? Why do you think that’s important? •
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Are there any issues about your rights as an individual that have had an affect on your recovery? Prompts: Are there any broader human rights issues? For example being treated with respect, the right to advocacy, advice and information, the right to care, access to benefits, and non-­‐discriminatory practice? Can you say a bit more about that? Why do you think that’s important? Are financial and housing issues important for recovery? Prompts: What are the positive and negative factors associated with this? Can you say a bit more about that? Why do you think that’s important? Does the physical setting in which you receive treatment in have any impact on your recovery? Examples could include; how comfortable, pleasant and welcoming it is, how safe you feel there. Prompts: What aspects of the setting are important? Can you say a bit more about that? Why do you think that’s important? Does the atmosphere where you receive treatment affect your recovery? Examples could include; freedoms, rules, how flexible visiting hours are, does it allow people to be open and honest. Prompts: What aspects of the setting are important? Can you say a bit more about that? Why do you think that’s important? Do the attitudes of the staff that are treating you affect your recovery? Prompts: In what ways do staff attitudes affect recovery? Are there any other ways staff can affect recovery, if so, how? (could give an example, of consistent staffing?) Can you say a bit more about that? Why do you think that’s important? 79 15. Do you think self management and autonomy is important in recovery? Examples could include; participation in your treatment plan, taking responsibility for your actions, having some control over your life. Prompts: • Can you say a bit more about that? • Why do you think that’s important? 16. Does looking after your physical health impact on your recovery at all? Prompts: • Can you say a bit more about that? • Why do you think that’s important? That is the end of the questions about recovery that we have to ask you. Note to Interviewer: ask first interviewer if they have any other questions. We would now just like to ask you a few questions about the interview itself. • Firstly, do you feel the questions were relevant to you in your situation? • Is there anything you would like to add? • Is there anything you would like to ask us? • How do you feel about being interviewed by someone who has used mental health services? • Did it make any difference to how you answered the questions? • How do you feel being interviewed by a doctor? • Did it make any difference to how you answered the questions? • Lastly, can I check with you how you are feeling after this interview? Do you have someone you can talk to about today? Is there anything we can do to support you in this? Note to interviewer: if you have any concerns with regard to the safety of the interviewee or that of others arising from what has been said in the interview then raise this with the interviewee, and say for their safety this will be passed on to their treatment team, but assure them nothing else will be disclosed. Thank you very much for coming today and talking to us. We really appreciate your help with our study. Give participant agreed money for their time and make sure payment form is signed. 80