4.2.1. Introduction

This section contains first-hand personal accounts from people with borderline personality disorder and a carer. The accounts offer different perspectives of the disorder: accounts A and B are written by former service users (both female); accounts C (male) and D (female) are written by current service users; and account E is from the mother of the author of account C. The writers of the accounts were contacted through the service user contacts on the GDG; they were asked to write about their experiences of diagnosis, accessing services and treatment, their relationship with healthcare professionals, and self-help and support during a crisis. Each author signed a consent form allowing the account to be reproduced in this guideline.

4.2.2. Personal account A

I’d been a troubled kid from about the age of 9. My Dad worked away a lot and I had a difficult relationship with my Mum; we clashed and there was limited physical affection between us as I got older. In general though, I would say that I had a spoilt, middle-class upbringing with no material hardships. Despite this I was still unable to cope with the out-of-control emotions inside of me. Looking back I am able to describe these emotions as anger, but at the time I didn’t know what they were and they terrified me. I was hurt and lonely but didn’t have the words to express how I felt or what I needed.

I remember the first time I started cutting myself. I was sitting in the school field at break time and rubbing a piece of glass up and down my arm. It hurt but the pain felt comforting and it focused my emotions on that point of my skin. When I bled it felt like all the bad feelings just flowed out of me.

From then on, it was as if I had found my escape mechanism. I never had to deal with out-of-control panic, fear, anger, rage or vulnerability again. I could just bleed. By my late teens I was an empty shell. I felt nothing any more, and no one could reach me or hurt me. I lived in a strange, safe, isolated world.

In my isolated world all communication shut down. At home I could count the number of words passing between my Mum and me each day on the fingers of one hand. At school I had friends and was academically successful but people were suspicious about the number of injuries I was developing.

One of my friends had read an article about self-harm and questioned me about it. Even though I was the one putting the razor blade against my arm, I was unable to accept that people would actually cut themselves on purpose and denied it. Teachers became involved but I think my horror at the suggestion of self-harm encouraged almost everyone to believe I was just clumsy.

From school I went on to medical school to train as a doctor. University is a challenging place for someone who struggles with emotions and relationships, and my cutting and other self-injurious behaviour increased quite dramatically in order for me to continue, but I did continue and was getting by. When I first started university I felt as though I had to re-learn how to talk to people – I had shut down so much that I didn’t think I could communicate on a social level.

In my second year at university, I was attacked and raped on the way home from a student party. Life started to spiral out of control for me at this point. The bigger my inner turmoil the stronger the need was to bleed. I started making deeper and deeper cuts, sometimes I would go through arteries and need to be hospitalised. I could no longer be described as getting by.

After one such incident I was visited in hospital by a psychiatrist and taken by taxi to the local psychiatric clinic. This was a serious shock to the system – I felt I was descending into an unknown and terrifying world of ‘loonies’ and ‘nutters’, and someone thought I was one of them.

I was immediately prescribed chlorpromazine along with assorted antidepressants and the side effects left me feeling at home in the asylum very quickly. My legs were twitchy and my whole body felt lethargic. I wandered around dragging my feet with my head hung low, and soon relaxed into day room behaviour of cigarette smoking, rocking and leg twitching. The drugs had the effect of numbing both my mind and my body and I was able to get through my days without feeling desperately self-destructive. It was not a good way to be seen by friends though, and I don’t think my partner and flatmates ever really got over seeing me like that.

I was diagnosed with post-traumatic stress disorder and depression. I started a course of psychotherapy at the same time, stayed at the clinic for a few weeks and then went back home. I continued with the therapy and my clinical studies but the two didn’t combine very well. Psychotherapy can leave you very raw as you deal with any number of complex issues from the past. As I’ve said before, I didn’t deal well with emotion; it was as if I hadn’t been taught how to recognise it or deal with it.

I had a very good relationship with my psychotherapist; I trusted her and felt we were getting somewhere, but the trouble with psychotherapy is that you often feel a lot worse before you start to feel better. I had been seeing her for some months when she announced that she was going to have to hand me over to another therapist as she had to move away. I think this came at quite a tough point in the therapy and it coincided with an escalation in my self-harming.

I was spiralling out of control, becoming hugely self-destructive and suicidal and I was quickly readmitted to hospital. I spent a number of days on constant observation, with a nurse staying with me every second of the day, but I still managed to harm myself. It was getting to the point where members of staff were actually putting themselves at risk in order to prevent me from destroying myself.

At this point my psychotherapist called my parents and told them that she didn’t believe I would still be alive to see my birthday at the end of the month. I didn’t see my parents very often but they had visited me once at the clinic for a family session with my psychotherapist. I can’t imagine how they handled this news. Even now that all this is behind us and we enjoy a good bond, I still feel desperately guilty for putting them through that entire trauma.

Shortly before my 22nd birthday I was called into a room with my psychotherapist and GP. They sectioned me and I was taken away to a regional secure unit ‘for my own safety’. A secure unit is effectively a medical prison for the criminally mentally ill; it is no place for a distressed, depressed and self-destructive individual. I cannot really complain that my psychotherapist sent me there though; I think in part she was desperately trying to ensure my safety – she felt a certain amount of responsibility as she had to move on, and there really weren’t any suitable alternatives at the time.

At the secure unit I found myself on a mixed ward with rapists and arsonists and for the second time I felt out of place. Despite the rigorous searches and removal of all my belongings, I still managed to secure razor blades. As a result, I was strip searched and I spent the next few days sleeping naked on a bomb-proof mattress on the floor of a padded cell, while under permanent observation.

It was here in the secure unit that the forensic psychiatrist gave me the label of ‘borderline personality disorder’. Given the nature of my surroundings I felt that I was being punished – I was locked up with people who had committed crimes and my core being, my personality, was under attack.

This particular crisis period was time limited (my panic was related to my birthday), so when that day finally passed safely I began to take control of myself again. I could get though the day without focusing entirely on ways of disposing of myself and instead I began to look for ways to get out. Thankfully I didn’t stay at the secure unit for very long. I had already started to appeal for my section to be quashed, but the staff also felt I was not in the best place – they felt somewhat compromised in retaining me as the only patient on a mental health section rather than one imposed via the courts. I was visited by the consultant at the local therapeutic community and invited for a community assessment.

I wasn’t sure how to take this latest development. A therapeutic community had been mentioned to me before and I thought this would involve groups of people having crisis meetings to discuss how it made them ‘feel’ when someone took their milk from the fridge, for example. Again, I didn’t think this was part of my life. I was a medical student – successful academically – but there was no getting around the fact I wasn’t coping with living very well. It was unlikely that I’d ever be able to go back to my studies, so I had lost my career, my home and my friends. Life had pretty much reached rock bottom for me so it was time for me to accept any lifeline I was being thrown.

I went to the community meeting and it was clear that this group of about 25 residents were split on whether they wanted me to join them. Half felt I should be given a chance and the other half were adamant that I would be bad for the group. I was considered a big risk given my history of uncontrolled self-harm. Finally they came down on my side and let me join them but on the condition that I’d be out if I cut again.

The therapeutic community was the strangest, toughest, most homely place in which I have ever lived. I was there for about 15 months, learning how to feel and live again. It was as if I was given a second chance to do my growing up.

It’s an incredibly challenging environment: if you mess up it affects other people and they don’t hold back from telling you. That is really tough. You can be struggling and want to cut, but you have someone facing you in a group telling you how selfish you are and how that would make them feel. It’s the group dynamic that gets you through in the end though. I learnt so much from the staff and residents in those 15 months and truly thank them for giving me back my life.

Part of the responsibility of living in a therapeutic community is to take on roles related to the running of the community. This varied between preparing meals, chairing meetings, writing notes on individual group sessions and feeding back after someone has spoken of their individual struggles. I often found myself assuming or being pushed into the role of spokesperson or advocate and the effect was to renew my feelings of self worth.

I arrived unsure of who I was and where I belonged but slowly, through the interaction with others, I was able to reassemble my understanding of me.

When I left the therapeutic community I was in a position to start putting my life back together. It took a while as I’d pretty much reached the bottom rung, but life is good for me now. I’m almost 15 years on and haven’t purposefully injured myself in that time. I’ve had a number of jobs, got myself a career, a PhD and some good friends. It’s taken me a long while to pick up from where I left off at 9 years old but I think I’m there now, happy, settled and coping again.

4.2.3. Personal account B

My psychiatrist gave me the diagnosis of borderline personality disorder when I was 24. I was an inpatient in a psychiatric hospital at the time. I had been expecting this for some time, having been aware of borderline personality disorder from my previous work as a nursing assistant in child and adolescent mental health. However, I had been struggling a long time before I realised the diagnosis was applicable to me. Consequently, receiving the diagnosis wasn’t a shock, and at that moment I found it reassuring that I wasn’t going to tip into a deep psychosis from which I would never return. It also helped me start to piece together my understanding of how I had got to that point – why things had got so bad that the only place I could have any kind of existence was a psychiatric hospital.

Looking back, my whole life had seemed to be heading to that point. As a child I was hyperactive and was more interested in my environment and learning new things than being held by my parents. I think my parents interpreted this as a rejection and as being difficult. In addition, the family dynamics were difficult and incomprehensible to me as a child and I blamed myself for them. However, I lived well and was lucky enough to be able to do most things that I wanted in terms of activities; my parents gave me everything that they could. Despite this, home felt too unsafe and volatile an environment to express my emotional and personal needs. Among my sisters I felt the odd one out. I felt that I didn’t belong in my family. My way of coping with these feelings was to throw myself into school, where my joy of learning, music and sport allowed me to immerse myself to the extent that my success at school somehow became a substitute for parenting.

What I didn’t realise at the time, however, was that I still had a huge yearning to be parented. I needed emotional connection, safety and understanding but didn’t recognise those needs nor knew how to get them met. As I grew older, I struggled more and more socially because what I was missing meant that I did not acquire the empathic understanding needed to manage social relationships. This yearning for connection led me to seek refuge in any potential parenting figures that I came across. Unfortunately, one person who took me under his wing was interested in me for the wrong reasons – I was sexually abused and raped as a child over a period of 6 months to a year. This amplified my difficulties. I became even more socially isolated and emotionally inept as I tried to shut out these experiences that I couldn’t begin to comprehend.

Not long after this I moved with my family to a different part of the country. At first, this was a welcome change and a relief from abuse. People had no prior knowledge or judgements about me and this was welcome. I could be different from before –I could start again. However, this relief only lasted for about 6 months. Now as a teenager, my difficulties and the emotions and memories I had temporarily locked away began to resurface. My behaviour at school deteriorated, my moods became unstable, I was withdrawn, I frequently sought out teachers for support but didn’t know why, I’d leave lessons for no reason, I’d have arguments with teachers, I began to self-harm (hitting myself mainly), and became more preoccupied with the thought of suicide.

When I was 14, I was referred to child and adolescent mental health outpatient services where I began work with a clinical psychologist whom I saw weekly, sometimes twice weekly, for approximately 4 to 5 years. I was diagnosed with post-traumatic stress disorder.

Having a psychologist meant that I finally had someone who could partly meet my need for a parent (in that they could give me an emotional connection and understanding I so desperately needed). I undertook some important work around understanding the abuse, but when she tried to initiate conversations about my family I couldn’t say anything. All I knew then was that I didn’t feel safe at home. She described my family life as being a ‘ghost town’.

During this time my thoughts of self-harm and suicide became more prominent, but my drive towards destructiveness was most apparent in my relationships with men. Not knowing how to deal with men after the abuse, the conflict between needing to be close to someone and being frightened of intimacy became increasingly more difficult to handle as I was now at that age where male attention was inevitable. I would find myself in difficult situations where I would end up having sex with people I didn’t want to as a result of fear and an inability to express my needs and say ‘no’. After a while, I figured the only way to deal with this was to be the one in control. Instead of waiting to be seduced I became the seducer, placing myself in a number of risky situations.

Despite all this, I managed to get to university. Although I thrived in the freedom that university allowed and in being away from my family, I was still extremely fragile in my sense of self and in my emotions. There was still a lot I had to deal with and understand about my past, and this at times, especially combined with the pressure at university, meant that I found it extremely difficult to cope. I accessed the university counselling service on a number of occasions, but found that it didn’t work at quite the depth I needed. In the holidays, I occasionally had the opportunity to have a number of sessions with my previous clinical psychologist. This support often enabled me to be ‘topped up’ just enough in order to survive another term. However, the final year of my degree saw things start to disintegrate; the added pressure combined with my limited resources meant that I had nothing left at times. My closest friendships broke down and I ended up taking two overdoses as I couldn’t manage the situation with my friends, the exams, and the thought of leaving university – I wasn’t ready to be an adult.

Just prior to these overdoses I had been referred to a psychologist at university and had been prescribed an antidepressant (paroxetine) by my GP. I struggled to work with this psychologist as he took more of a behaviourist approach, which I didn’t find at all helpful. I also struggled with beginning a new therapeutic relationship after having had such a positive therapeutic experience with my previous psychologist. I eventually took myself off the antidepressant because I didn’t feel that it was helping.

Somehow, I managed to complete my degree and returned to live with my parents. As a result of my overdoses at university, my GP wished to refer me to adult mental health services when I re-registered. This resulted in my referral to another clinical psychologist who I met approximately biweekly. Things had settled since returning from university, but my difficulties hadn’t gone away – they were just more in the background. I still struggled a lot of the time, but I was able to keep this more private. I began working as a classroom assistant in a school with children with special needs, which I thoroughly enjoyed. I then started work in child and adolescent mental health. This proved to be a mixed blessing.

Therapeutically, the clinical psychologist and I had just started to unravel some of my family dynamics and make sense of my experiences growing up. I began to understand that my Mum and I had both struggled with insecure attachments throughout our lives and this helped me to understand some of the dysfunctional interactions I so often repeated in my other relationships. The combination of attachment and psychodynamic understanding worked well for me. It captured so much of the unexplained and helped me construct my life story, putting more solid foundations in place for a sense of self to develop. Understanding my Mum’s difficulties and, in addition, my Dad’s background (his Mum died when he was a teenager and he had had repeated episodes of depression and anxiety) also helped me understand the volatile interactions that often occurred in our family and my parents’ capacity to be mildly physically and emotionally abusive at times.

However, doing this type of therapeutic work while working in child and adolescent mental health proved to be a destructive combination. I thoroughly enjoyed the work and felt that I was good at it. However, I was giving so much to the children I was working with and at the same time was more open to my emotions as a result of the therapeutic work I was undertaking. Everyday, I saw in the children how I was feeling inside being acted out in front of me. This triggered so much that when I went home in the evening I couldn’t begin to recognise, name or understand the emotions I was feeling. Instead, all I experienced was a huge vacuum. I was being sucked into something I didn’t feel I could survive. I literally felt that this feeling would kill me – it was so huge and consuming.

The only way I could handle these feelings and to feel any sense of control was through self-destruction, although more realistically I felt simultaneously out of control and in control at the same time. The drive to self-destruct was so strong that I felt I had no choice but to self-harm; but through the act I also found some way of regaining some temporary stability, relief from that vacuum, and some control. Previously, I had kept busy to keep this emotion at bay, but as time went on and the therapeutic work continued I couldn’t do enough to stop feeling the emotions: overdosing, cutting, burning, blood-letting, balancing precariously on the top of car parks and bridges hoping I could throw myself off them – I tried almost everything. By day I was going to work and pretty much managing, but in the evenings and at weekends I was either being held at the police station detained on a section 136 or in A&E. No one in the police station or in casualty could understand that such a seemingly together person who had a good job could also be so destructive and wasting their resources. I was leading a completely parallel existence. Eventually, because I was so exhausted I started to struggle at work. I took sick leave, never to return.

As soon as I gave up work, which was the only thing holding my life together, I deteriorated rapidly. My self-destruction increased to two or three times a day, I didn’t sleep or eat, and my finances were in chaos. My whole life became a constant game of Russian roulette. Although I struggled with suicidal thoughts, most of the time I didn’t actively want to die. I just wanted to feel safe and access help, but equally, if I died by accident as a result of what I did, I didn’t care either. Let fate decide.

Eventually, this led to a point where I was admitted to hospital and was diagnosed with borderline personality disorder. I was an inpatient for 8 months. At first it was a difficult admission as my determination not to be medicated left the staff struggling to meet my needs. I did, however, manage to build up relationships with some of the more experienced staff. They helped me feel safer and they had the skills to work psychotherapeutically with me. This I found more helpful than the interventions of less inexperienced staff who tried to control me and my emotions by becoming more authoritative. This tended to escalate situations.

The team was split between those who were more open minded about working with people with borderline personality disorder and those who felt I shouldn’t be treated in hospital. This was difficult for me to deal with at times as it always came across as a personal rejection. Eventually, as my ability to build relationships and to learn to trust and ask for support increased, I gained more respect from the team as a whole. This improved consistency in their approach, helped me feel that staff responses were more predictable, and this in turn helped me to feel able to trust them and ask for help, rather than self-destruct.

Throughout this time, as well as receiving support from the nursing team and psychiatrist, the work with my clinical psychologist continued. I was able to make much more progress in an environment where I felt safe. We continued to work primarily in a psychodynamic/attachment orientated way, however, some inputs from cognitive analytic approaches were very helpful in understanding the cycles and patterns of behaviour in which I would get entangled and would lead to self-destruction.

Despite the progress I made during this lengthy admission, I didn’t feel that I was yet at a stage where I could survive at home again. I had a mortgage, which made options such as supported housing feel too impossible, and I still didn’t trust new people enough to have care at home. A therapeutic community was therefore suggested and after some consideration and a couple of meetings with the community’s outreach team, I decided that it was probably the best way forward and a step that I now felt ready to make.

This transition was probably one of the hardest I have had to make: I was leaving the safety of the hospital and was going to have to interact with peers and to survive without parents in any form. However, the therapeutic community, although difficult, proved to be the right move. Its combination of different treatment approaches, group therapy and its emphasis on residents taking responsibility for running the place and for each other, meant that I became more honest with myself and others about how I was feeling, making it easier to identify my emotions and access the support I needed. It also allowed me to do what I hadn’t got around to in hospital – linking my past story with my current patterns of behaviour. I saw for the first time how much my current thinking, interpretation and behaviour replicated my past survival methods in the family, and how these strategies I used as a child could no longer work as an adult. I recognised the need to learn new skills and although it sounds a simple process, the reality was that it was difficult and at times traumatic. I had to face up to the fact that, at times, I could be selfish, blame others for things that were my fault, and shut others out. I had to learn to accept all facets of myself and piece those functioning and malfunctioning parts of myself back together so that I could start to build a sense of self.

Another important thing I learned at the therapeutic community was that I needed to be my own parent and that I had the skills to do it. I had to look after myself in the way I wanted to be looked after. This would help me feel better about myself, increase my sense of self-agency, which in turn would further strengthen my sense of self. Perhaps most importantly, I learnt to interact socially. The therapeutic community gave me an environment in which I could learn what was acceptable and unacceptable in terms of dependency, and through the process of seeing my behaviour mirrored in the other residents, I realised the negative impact I could have on other people. After a year, when I came to leave I felt like I was functioning better than I had functioned in my entire life.

The difficulty for me was maintaining this once I had left the therapeutic community. Living a few hundred miles away I couldn’t make use of the outreach services that easily and I was too far from the friends I made there to have regular contact with them. This meant that when I left I was socially isolated again, having not had much of a social network prior to my admission into hospital. I was also living on my own for the first time in 2 years, and dependent on the mental health services to fill the gap the therapeutic community left behind.

I continued to work with the clinical psychologist and psychiatrist I had prior to the therapeutic community, but in addition, I also had a community psychiatric nurse (CPN). I found it difficult to work individually again after group work and I also struggled with my relationship with the clinical psychologist. Having been dependent on her before, I wanted to manage the relationship in a different way using what I had learnt at the therapeutic community. However, we both found this a difficult change and consequently we struggled to find the same engagement and level of work we had achieved previously. In hindsight, this was probably one relationship I shouldn’t have gone back to, but we both found it difficult to end the relationship and we got stuck in an unhelpful dynamic for a while.

The therapeutic work, at this point, came mainly from my psychiatrist, who prior to the therapeutic community was too ‘advanced’ for me to engage with for any more than just a general overview of my care. However, my improved ability to articulate my feelings meant that I could now engage with him therapeutically. In my community psychiatric nurse, I had a more general support that was whatever I needed it to be. This ranged from the practical and the therapeutic to the social (as much as it could be within the boundaries of the therapist-client relationship). This flexibility was hugely helpful, especially combined with the consistency and continuity in my care I had received before and after the therapeutic community.

Unfortunately, the lack of any social network and the loss of confidence caused by my disintegration and lengthy hospital admission meant that I struggled to build on the progress of the therapeutic community. Although I was managing more than I wasn’t managing, I began to self-harm again, having previously resisted this urge at the therapeutic community. My CMHT helped me to keep this to a minimum by increasing visits at times of need when I asked for help and through short hospital admissions (2 to 3 days) where I could have some respite and feel safe. Also crucial in helping to keep self-harm to a minimum was the social services out-of-hours team. Although I had used this service before the therapeutic community, the calls would often escalate crises as I struggled to accept that at that time they couldn’t meet my needs. However, now that I could articulate myself better and wished to use alternative methods to cope, I established good relationships with most of the team. The out-of-hours team were happy to engage in supportive conversations as long as they had time, and if they didn’t they would explain that to me so that I wouldn’t feel personally rejected and agree to ring me back when they had more time. This worked really well for me, as my most difficult times were at night and their consistent and predictable responses were helpful in settling me ready to sleep (with the aid of promethazine at times). This non-judgemental response allowed me to engage enough to articulate what I was feeling and to move away from the feelings (often onto mundane topics for a short while) until I felt calm enough to manage the rest of the night. Knowing that this service was there and that there was always an option to ring back made it such a huge part of my progress after leaving the therapeutic community.

All of this helped me to maintain a much higher level of functioning. However, my lack of confidence prevented me from making much progress in the other areas of my life. I was still a full-time patient and I struggled to believe that this would ever be different. Since the therapeutic community I had found the label of borderline personality disorder a hindrance. It made me feel like a second class citizen, like I could never be normal. I struggled not to believe the myth that it was untreatable and felt that no one would want to employ me.

Despite the progress I had made, I couldn’t live with the thought that my life would always be limited. I sank into a depression, and this combined with the unfortunate timing of another rape, a destructive relationship as a way of coping with the rape, a pregnancy as a result of the destructive relationship and subsequent termination, and the retirement of my psychiatrist – all in the space of about 8 months –destabilised me so much that I ended up being hospitalised involuntarily under Section 2 of the Mental Health Act.

Although, at the time, this appeared to be a huge setback, this admission changed a lot for me. I was prescribed an antidepressant (mirtazapine) for a few months which I found really helped to lift my mood. However, towards the end of the admission when my mood had improved, I also realised that I had to make a choice – to live my life, reject the label’s myths and decide for myself my limitations, or to believe the myths and accept that I would be a patient for the rest of my life. The latter was not an option to me, so after I came off the section I decided that I needed to face my fears and start to rebuild my life. I decided to enrol at university to undertake a degree in psychology. This proved to be a successful move, and one that gave me a good balance between commitment and space for me to manage myself and the transition I needed to take me from being a patient back to a being a functioning member of society. It also allowed me to gain confidence in an environment that didn’t ask too much of me most of the time. It enabled me to get to a point where I had a social network, an identity other than ‘patient’ and feel able to leave behind my last connections with the service, my community psychiatric nurse, and the social services out-of-hours team.

I did it – I am no longer a patient. I completed my degree, and am managing to work full-time. I no longer consider myself to have a diagnosis of borderline personality disorder. I have none of the symptoms and when I look around at other people I don’t seem to be any different from anyone else. The only time I feel different is when I recognise that my journey to this point in my life has been a lot more complicated than many people I come into contact with. However, when I look around I also see myself handling situations more competently than many other people. I have gained in strength and resilience as a result of my experience of handling such intense emotions, which means that I am not easily overwhelmed by life’s challenges. I’m not perfect though. I still have bad days, but talking to friends, so do most people. I really am no different. I no longer have thoughts of self-harm. My moods are more recognisable as normal, and my sense of self is much stronger and doesn’t fragment anymore. In addition, I am more open, and able to recognise, contain and talk about my emotions. I can also manage friendships and intimate relationships. The only thing that is remotely borderline personality disordered about me now is that I can still remember how it felt to be that way – but it is just a memory.

4.2.4. Personal account C

For me having borderline personality disorder is having constant and unremitting feelings of unbearable and overwhelming sadness, anger, depression, negativity, hatred, emptiness, frustration, helplessness, passivity, procrastination, loneliness and boredom. Feelings of anxiety are like silent screams in my head and it is as if masses of electricity are channelling through my body.

I feel unloved and unlovable and constantly doubt that anyone likes me or even knows I exist. Both my body and mind feel like they are toxic and polluted. I always felt dirty and scruffy no matter how many baths I take. My sense of physical self is constantly changing – I am not sure what I look like and my facial features keep changing shape and getting uglier and uglier. Mirrors are terrifying – I always think I’m fatter or skinnier than I am.

Sometimes it seems like people are sneering and laughing at me all the time and attractive women look at me like they are murdering me with their eyes. Other times it is as if I am invisible. At times I hate everyone and everything. Ideas about who I am and what I want to do fluctuate from week to week. My perspectives, thoughts and decisions are easily undermined by what other people think or say and I often put on different voices to fit in. I am never satisfied with my appearance, but then I am never satisfied per se – perfect is not even perfect enough.

My feelings lead me to self-medicate with alcohol and food and to overdose. I slash my arms, chest stomach and thighs with a razor blade and constantly think about killing myself or visualise my own death.

I have also had some hallucinations, such as the devil’s face appearing on the wall and talking to me in Latin and the devil coming into my flat in the guise of black poodle and me putting my hand inside its body. I also have headaches, panic in my stomach, and feel sick and tired all the time. It is often hard to get to sleep and I have horrific nightmares.

Signs of my emerging personality disorder started in early childhood in the late 1960s/early 1970s. I was so disturbed that my adoptive parents had to put bars over my windows because I used to throw all my toys and bed linen out of the window every night and they were worried I would fall out.

I was told that I was adopted very early on and have no memory of ever thinking that my adoptive parents were my real parents. As far back as I can remember I used to pray that my real Mum would rescue me. When someone came to the front door I used to rush towards it shouting ‘Is that my Mum? Has she come to get me?’ My Nan remembers me asking women in the supermarket the same questions. I also pleaded with any women teachers from infant school upwards if they would adopt me.

I was a very disruptive, naughty child who wanted so desperately to be loved and accepted by my adoptive family. I had behavioural problems and used to rock backwards and forwards going into a trance-like state for hours everyday. I had terrible insomnia from early on and would repeatedly bang my head on the pillow and make a droning noise to distract myself from the unbearable agitation that I felt. This behaviour ignited a cycle of physical and emotional abuse at the hands of my adoptive parents who did not understand the mental distress I had to endure on a daily basis. My father, exasperated that he couldn’t sleep because of my head banging, used to come into my bedroom and punch me until I stopped. I used to have dreams where the devil would tell me to go into my parents’ bedroom and smash my Mum’s and Dad’s heads in with a hammer.

My father was a rigid disciplinarian and I quickly became the black sheep of the family – the source of all the family’s woes and misery was my fault. I spoilt everything. I was to blame for everything. They went on family days out and I was excluded for being naughty, locked out of the family home, and left sitting in the back garden on my own for hours on end until they returned, happy that they had had a fun day out without me around to spoil it for them. I used to deliberately say all my Christmas presents were a load of shit to annoy them and ceremoniously smash them all up on Christmas day in utter defiance then eat as much chocolate I could until I threw up. I often spent Christmas day banished to my room.

I was a habitual liar at school telling my friends that I went on amazing holidays and had all these amazing toys (when the exact opposite was true). My father often withheld presents and instead gave them to my brother and sister to punish me. To punish me further he refused to fund school trips and would ration the sweets my Mum bought me in an attempt to control my behaviour.

I started to dress in increasingly attention-seeking clothes. I used to bite my nails down so far they would bleed and were very painful and as a punishment I was told my pocket money had been stopped for 5 years.

One time after I refused to rake the back garden my father beat me with the rake. I ran into the kitchen hoping my Mum would protect me but she grabbed me so that my Dad could beat me some more. I grabbed a carving knife and tried to stab her so she’d let me go. I was beaten severely for this and after that they contacted social services requesting I be put in a home for maladjusted children. I was 12 years old. Social services tried to work with the family to overcome our problems but my parents refused to attend the therapy sessions and I had to go on my own. When the decision was made not to send me away my father was so angry he just used to act as if I didn’t exist. The rest of the family tried their hardest to get on with their lives but the silent aggression from both sides made me run away and spend hours on my own in the woods reading my comics. It was during this time that I started to feel suicidal and constantly tell my Mum and Dad that I wanted to die to which I was told that I had growing pains.

I hated my Mum and Dad and wished they where both dead and constantly spat on their food and urinated in their drinks if I could get away with it. I used to bully my younger brother because he was their flesh and blood and mercilessly beat and threatened both my brother and sister until they cried and begged me to stop. I started to set fire to things and torture insects. I prayed to the devil that people I hated at school would be killed in horrific accidents and I used to steal from my parents and smash my brother’s and sister’s toys to punish them. I remember watching the film ‘The Omen’ and thinking that I was the Antichrist.

I was very disruptive at school and repeatedly got the cane for verbal attacks, such as calling the headmaster a ‘cunt’ to his face in assembly. Even at junior school when I was 10, my father told me to tell my teacher she was a ‘stupid bitch’, which I did and got into a lot of trouble.

By 14 I had started sniffing glue to escape the misery I felt and also experimenting with cross-dressing. I was often sent home from school for wearing women’s clothing. I started to alienate the few friends I had by doing this but I thought I was the messiah and they would all worship me one day.

My father hated my emerging transvestism and smashed my make-up box to pieces and forbade me from wearing any women’s clothing around the house. The threat of being thrown out onto the street was made constantly. I went on hunger strike and stopped swallowing my food. I used to store all the rotting mouthfuls of half-digested food in shopping bags in my wardrobe.

I left school in 1983, failed to get into college and was on the dole for 3 years. During this time my eating disorder worsened and I developed severe acne. I drifted through the 1980s in a haze of solvent abuse and, due to my terror of women, found some relief in pretending to be homosexual.

The slow decline into hell that started in my childhood gathered pace during my twenties. I had one serious relationship with a girl but it was stormy and complex. I used to feel nausea after sex and constantly behaved like a homosexual and lied about my sexuality to her. In relationships I have an intense need for constant reassurance; and when I try to hold back I get unbearable feelings of panic and fear of imminent abandonment. I also find it very difficult to trust people.

I went through a particularly intense stage of religiosity in 1988 when I became a Jehovah’s Witness but I very quickly started to feel disconnected from everyone in the congregation and habitually fantasised about murdering and torturing them.

When my relationship ended I stated to drink heavily and self-mutilate, which led to my first contact with mental health services in 1990 at the age of 23. I saw my GP first, who referred me to a consultant psychiatrist. After three lengthy assessments I was told I had symptoms of a classic disorder, but that it could not be treated with medication. I was formally discharged from services never knowing what the disorder was. Because of this I believed that the psychiatrist thought I was making it up.

My parents, who were divorced by this time, had the sense that because I had been discharged there mustn’t be anything that wrong with me. My parents and friends also thought I was making it up. I was left thinking that my problems were not real even though I constantly felt suicidal and my behaviour by that time was very extreme. People thought I had mild depression or was just an attention seeker. I was put on an antidepressant by my GP. But my depression, drinking and self-harm worsened and I constantly spoke of suicide. After I did try to commit suicide in 1991, I was given ten or 12 1-hour sessions of CAT. This made no difference whatsoever and I continued to deteriorate. In 1993 after another suicide attempt I had 20 sessions of CBT but this also did nothing to help me.

In the early 1990s I was reunited with my real parents. This was not without problems. After I was told that my mother attempted to have me aborted I started to despise her and fantasise about murdering and torturing my real parents as well. I particularly hated my real sister.

I endeavoured to try and reconnect with them in 1997 after I was made homeless and had been living in a drug psychosis unit for 13 months because there was nowhere else to put me. I didn’t have psychosis and often wondered why I was allowed to stay there. It was during that time that a junior staff member broke her professional boundaries and told me I had borderline personality disorder. I misunderstood what she had said and thought it meant I was on the borderline of having a personality disorder, and therefore was not that serious (even though I felt suicidal all the time).

After this I was housed in an old people’s block on my own and rapidly spiralled out of control. I used to over-medicate with all the drugs I was taking: I would take a cocktail of SSRIs, sleeping tablets and alcohol that would make me go into a trance. I used to do this on a daily basis and just lie in bed all day in a haze rarely getting dressed or leaving the flat. I couldn’t look after myself and lived off the same meal everyday: cornflakes, saveloy and chips.

My flat was undecorated and I slept on a mattress on the floor. I was obsessed with perfection and spent hours redoing the same small DIY jobs over and over again compelled by a vision of my dream home. In reality I was living in an uncarpeted, unfurnished flat with no furniture and which was covered in plaster dust from my endless attempts to make all the walls perfectly flat and smooth.

In the late 1990s I had a few therapy sessions for body dysmorphic disorder, but the therapist seemed very under-trained. She was a nice person and seemed to care, but she said that everyone has a personality disorder. She used to give me photocopies from books to read which were of no benefit whatsoever.

The thing that finally had an impact on my symptoms was attending a therapeutic community from 2005–2006. It enabled me to make some progress, to understand myself, understand boundaries, and to see the effect my behaviour had on others (a massive deterrent). I was able to start loving myself and to have respect for myself and others. It also allowed me to break my dependency on my real mother, to gain insight into my cognitive distortions, to learn how to make and keep friends, how to manage destructive impulses and to ask for help. I had not realised that the label ‘personality disorder’ was so stigmatising until I went to the therapeutic community and met other sufferers. However, even with a year in intensive therapy at the therapeutic community I still have only improved in some areas and will need ongoing support and help and further treatments.

After I left the therapeutic community, my consultant psychiatrist was advised that I should remain on an enhanced care programme approach, but he ignored this advice and withdrew my access to a CPN and the self-harm team. In my first out-patients appointment after leaving the therapeutic community he angrily raised his voice and told me ‘there was no scientific evidence to show that you will ever improve’.

Borderline personality disorder has had a serious impact on my life. I can’t concentrate for very long and I get confused by what people mean. My obsessions about perfection get in the way of doing almost anything practical and I can’t complete tasks. Although I crave perfect order I live in total chaos, with rubbish, clothes, crockery and magazines strewn all over the place. I live in absolute squalor and never have any motivation to tidy up because attaining perfection is so stressful I don’t even want to try. I am unable to make plans and keep to them and I find it almost impossible to make decisions. I get bored and agitated very easily and thoughts go round and round in circles in my head. To most people boredom is endurable, but when you’ve got borderline personality disorder boredom is a killer. You’re too unmotivated and hate yourself so much that you don’t want to do anything, go anywhere or see anyone. Boredom will make you self-harm and start that fever pitch agony of wanting to commit suicide. I have hair trigger explosions of intense feelings. Sometimes I feel so excited about doing something it’s as if I could conquer the world then a couple of hours later it just seems like a load of bollocks. I can’t decide what I want to do with my life. I find it difficult to work unsupervised and I have started college courses but then I get angry with the other students and end up hating everyone, giving up and lying in bed all day for weeks on end.

It has also seriously impacted on my relationships and I find it very difficult to make friends. I feel angry that people don’t understand me and in turn people are frightened by my rages. I am terrified of engaging in conversation people I’ve not met before because I am worried they will think I’m boring. I love people one minute and then hate them and want to hurt them the next. Likewise, I can fall in love with someone almost instantaneously then be repulsed by them in a matter of hours. I can be abusive then feel terrible remorse and fear being abandoned. I have sexual feelings but can’t have sex; this drives me insane as the hunger never goes.

My condition has changed since leaving the therapeutic community but not as much as I’d hoped. Some of the feelings are not as extreme as they were before I went there but because I refuse medication some are even worse. I’m learning how to deal with them better but I still relapse and battle with suicidal and violent feelings, and my obsessions around perfectionism are still really bad. I still self-harm but realise it is futile and I am alcohol dependent; if I’d got some help when I left the therapeutic community I would not have started self-harming or drinking again. I also have problems cooking and looking after myself. However there are some days when I like who I am more than ever and I feel happier than I ever have done in my entire life. I am also in a relationship, which although is a bit unhealthy at times, is not as co-dependent as in the past, and I have made improvements to make it work.

In order to try and stay well I reassure myself and assume that things will be positive. I relax more and meditate on what I want and not on what I don’t want. I have a gratitude list of all the good things in my life that I read when I feel bad. To help with my self-esteem I try to take a pride in my appearance. I attend Alcoholics Anonymous, which is helpful although I find the interactions with other alcoholics can be problematic at times. I try to be more ‘boundaried’ with my emotions and read as much as I can about personal growth and recovery to give me hope. I keep myself busy and avoid people and situations that wind me up. I also try to have contact with other people recovering from borderline personality disorder at least once a month.

4.2.5. Personal account D

I don’t know when I was first diagnosed with borderline personality disorder, but the first time I knew about it was when I read it on a report, about 5 years after I had been initially referred to psychiatric services. I was totally horrified and ashamed. I thought I was one of the ‘untouchables’, one of those patients I had heard described as untreatable and extremely manipulative by health professionals whom I regarded as highly competent. I fell into deep shock and crisis for some time after.

When I was a young child I was over-sensitive and needy, constantly acting out for attention. Unfortunately both my parents were ill-equipped for parenthood: my father was an alcoholic and my mother had her own mental health problems and never even wanted children. Early on I became the runt of the litter, constantly bullied and shamed, so I learnt to trust no one and keep to myself. This was an impossible task for someone with my personality.

At age 32 after having been severely bulimic for many years, and still not having managed to kill myself, I sought psychiatric help. This was initially an eating disorders unit. The staff there were very kind, but I always felt that they didn’t know what to do with me. I felt like I was disintegrating.

I had two stays in the eating disorders unit with the second being followed by 5 months in a drug and alcohol rehabilitation unit, all of which helped regulate my behaviours. But without my usual coping strategies (alcohol, drugs, food and cutting) I had no way of surviving what felt like such a cruel and dangerous world. So despite doing everything I had been taught for a while, and despite all my determination to be well, I eventually succumbed to my old ways of coping. As all my treatment had been aimed at stopping them, I fell back into the bottomless pit of shame and disgust, only to then be forced back into hospital or a crisis unit for a short respite. My stays in both the hospital and the crisis unit were invaluable at those times of crisis, because they were time-limited and managed appropriately. As I had a strong need to be looked after and be rescued from myself, it was essential for me that it was like this.

But despite weekly psychotherapy, and regular appointments with several different health professionals, none of it was getting to the root of the problem and my admissions were becoming more frequent. So eventually I was admitted to a specialist day unit for borderline personality disorder. Here for the first time I was not looked at as a set of behaviours and stuck in an appropriate box. Instead I was seen as an individual with my own problems that staff wanted to learn about and help me with. Finally I felt listened to and understood as people could see me as a whole set of problems rather than looking at the individual bits of me. During my time at the unit I learnt that I use what others see as unhealthy coping strategies; to some extent they work for me and they are what I have known for almost 30 years. There are times where I do fall back on them because life can feel just too painful and frightening without them. I use them as my armour to protect me from the outside world. So my goal changed from giving up all these behaviours to minimising them instead and not to shame and humiliate myself when I once again fell back on them.

My relationship with my psychiatrist is very good and I trust him implicitly as he has always tried to understand, and has always been totally reliable and consistent. I also know I can contact him between appointments if I am not able to cope and he will try to see me. This gives me a lot of strength and so reduces the need to contact him as a result.

I have also been one of the lucky few who was in the first instant referred to my local hospital, which has very good specialist services such as dual diagnosis, an eating disorders unit, a crisis unit and specialist psychotherapy services for borderline personality disorder. But I was plagued by long waiting lists and being passed from one health professional to another until I was given the right treatment.

I have always tried to find support groups to help myself as much as possible and help me through the gaps in between appointments. I have found these invaluable and very supportive, even though I felt there was a big gap between other people’s problems and my own.

Borderline personality disorder affects my entire life, from the minute I get up to the minute I go to bed, although to a much lesser degree than it used to. But all day I have the misery of sitting in my flat by myself everyday because the fear of being with people is still greater than the fear of being alone; the sleepless nights and tired days, so that I can only work a few hours before feeling exhausted; the continual racing mind and appalling concentration, which makes conversations hard to follow; and feeling battered and hurt constantly by people due to my over-sensitivity. But on the worst days I’m learning that the safest and kindest thing I can do for myself is to climb back into bed for the day until the suicidal thoughts abate.

I’m learning to live life, which is often filled with pain, fear and mental torture, but I’m also learning that some days are better than others. I’m learning to accept my fragilities: that there are many everyday things that feel impossible to me, as well as many things that I do to myself in the secrecy of my flat that others would be totally appalled by. It all seems manageable so long as I don’t compare myself and my mess of a life with others.

With no close friends or family and only razor blades, food and alcohol as my allies, I guess borderline personality disorder continues to be my only close friend.

4.2.6. Personal account E

I am the biological mother and carer of my son, who has borderline personality disorder. He was adopted and when we met in 1991, when he was 24, it was obvious he had some kind of mental health problem. In 1990 he was referred by his GP to a consultant psychiatrist at his local community mental health service. Suffering with obsessive behaviours, social phobias and eating problems, the final straw came when making an item of clothing and he had totally lost control. After several weeks of assessment he was told he had symptoms of an unnamed classic disorder that could not be treated with medication; the consultant told him there was nothing more he could do for him and discharged him from his care.

Once I got to know my son he eventually told me about his obsessions concerning his body and clothes, his aggressive thoughts, and his drinking and self-harming. He told me that when a relationship with a girlfriend had ended he made massive cuts with a razor on his chest and arms and put bleach in them. He covered up his initial self-harming episodes and he was left with hideous scars. He also told me about his physically abusive childhood and lack of emotional bonding with his adoptive parents.

I was beside myself with grief, appalled that nobody seemed to care enough to help or listen to my son’s very distressing story. He went back to his GP who gave him antidepressants and arranged a course with a local counsellor. Looking back now this seems to me to be wilful neglect as he fell deeper into an abyss of misery.

This was all new to me but at that time I felt sure that with my support and further help there would be a light at the end of the tunnel. However, I watched him deteriorate even further over the next 5 years with no real support or constructive treatment from his CMHT. His adoptive mother couldn’t cope with him and in 1994 when she decided to sell the family home she told him to leave. This threw him into total chaos and bouts of extreme anxiety and excessive anger, which he turned in on himself. At this time he seemed to draw away from me and for about a year had only spasmodic contact. He seemed to find some solace in the fact he was given a social worker who seemed to be trying to sort out his life for him while finding a place for him in a hostel.

The hostel was for people with schizophrenia and those with drug psychosis. He received no treatment and had only spasmodic visits with a consultant psychiatrist when in crisis. I felt totally helpless for the next 2 years as I watched an extremely intelligent and articulate young man with real creative talent living a distressing life, cleaning toilets to earn money, having no social life, taking antidepressants, drinking to excess, self-harming and attempting suicide by taking an overdose and slashing himself severely.

During this time my son learnt from a female member of staff at the hostel that he had borderline personality disorder. This was a lapse on her part and totally unprofessional, but at least we now knew. We mistakenly assumed it meant that he was only on the borderline of something, not having a full disorder, so we didn’t really see it as that serious. Nobody told us any different and we were left floundering in the dark.

I could not bear to see my son suffering at the hands of his local CMHT any longer so in 1996 I asked him to stay with me temporarily and offered him some work in my office, which was a creative environment, just doing simple tasks that would keep him occupied. His care was transferred to our local CMHT under the care of a consultant psychiatrist. I remember thinking that at last, with a new mental health team, we had hope, we would be able to access better treatment and perhaps begin to understand what was really the problem. With my love, care and support and real treatment I thought I would see my son at last living a life he really deserved.

What followed then was the most traumatic 10 years of my life. The glimmer of hope we had at the outset was soon to be extinguished. The local trust was worse than my son’s previous area. The people who had been entrusted with his care treated him with neglect and total disregard for his feelings yet again.

My son has been given so many diagnoses: in addition to borderline personality disorder he has been told he is body dysmorphic, schizotypal, schizoaffective and obsessive-compulsive. Sometimes when I asked the consultant for more information he denied he had even given that diagnosis – he changed it so many times he couldn’t remember what he had said. The consultant never explained anything in great detail, all he seemed to do was prescribe medication and tell us both to be patient. He told us that the local trust was running with restricted budgets and staff and that there were no trained therapists because of maternity leave. He took months to follow things up and lost important letters. I complained there was no CPN but the consultant said there was no need for one. My son was never taken seriously and was told on numerous occasions when expressing his feelings of suicide that he didn’t feel suicidal and should stop saying it. His anger grew and grew.

My son also met with no understanding from others, such as nurses who attempted to stitch his cuts with no anaesthetic. He was handled roughly, without any sympathy or care, and with an attitude of ‘Oh well, you did this to yourself’. Usually when he was discharged we would go home with him caked in dried blood because nobody had bothered to clean him up. On more than one occasion I came home to see a noose hanging from the banisters and blood everywhere.

I also complained that my son’s social worker was hardly ever available, especially in a crisis. She curtailed and cancelled appointments and gave him misinformation about housing. On one occasion when I was stressed and just couldn’t take anymore I took my son to the CMHT and wanted to leave him there. All the staff did was leave us both in a room and kept telling me there was nothing they could do, our consultant wasn’t available and to go home. In the end when I had calmed down I did go home, feeling totally defeated and completely alone.

Around 1998 it seemed that body dysmorphic disorder was the main diagnosis. A friend of my son heard of a specialist in her area and found out we could see him privately. After seeing my son the specialist agreed that his condition was extremely severe and needed lengthy inpatient treatment. He did not agree with the drugs regime he had been given – a cocktail of antipsychotics, mood stabilisers and anti-depressants. However, it was a private clinic, and while they had some funding arrangements for some NHS trusts, this did not include ours. We would have to fight for a place – and fight I did. We were told by our trust that it was procedure to apply to a hospital that the trust had connections with; if they denied him access to their programme then he would automatically get funding for the private clinic. This process took over 2 years, with much prompting and demands from me. After waiting a very long time for an appointment at the hospital and being told that they could not give him the 24-hour support he would need, they said that the private clinic would be the best place for him. I felt so relieved that at last he would get treatment from somebody who really understood him. But soon our hopes were dashed again. The hospital changed their criteria – there was inpatient treatment available after all. My son was in total despair about this, which led to more self-harming and further suicide attempts.

During this period my son lived in total chaos even though I tried on a daily basis to help him cook and tidy his room and to learn coping strategies. One time I came home to find the house had been totally trashed, windows broken, furniture thrown outside, and armed police at the property asking if I wanted to press charges. The house was full of blood. He was sent home the following morning and there was no visit to assess if he was a danger to himself or me. With all this aggression it was obvious that the inability to be heard was growing and growing, but nobody was listening.

Because of the above episode my son was sent to see a forensic psychiatrist. She assessed him and wrote a report. We were not allowed to read this at the time, although when we subsequently made an official complaint we did see the notes. In this report the consultant said that my son was a danger to me and that it was in his best interest not to live with me. And yet they allowed us to live together for a good many years after this episode. He was becoming more and more dependant on me and would have anxiety attacks if I were ill or had to travel any distance in my car. He was afraid that I would not return or die.

On another occasion when I had gone to bed, he tried to kill himself with exhaust fumes from my car. Luckily the car was parked on a public road and someone banged on the window. He came staggering into my bedroom and dropped unconscious to the floor. As I waited for the ambulance, I held him in my arms and remember thinking that he was going to die. The ambulance staff were very supportive and caring but at the hospital it was seen as just another suicide attempt, and he received no sympathy.

I just had to keep going, keep working, and keep looking after my son. I was the only one who seemed to care. I wanted to scream from the rooftops, ‘SOMEBODY HELP US PLEASE’. But I was also beginning to resent having my son living with me. I began to see my son as the disorder and forgot that it was an illness, but his behaviour around the house and in my office was becoming intolerable. I was totally overwhelmed by the enormity of it all – I was trying to run my own business, pay all the bills and single-handedly (I had separated from my husband) cope with my son’s mood swings, self-harm and aggression. I begged his social worker to find somewhere for him to live apart from me and she told us she had found him a place at a shared housing scheme. He was shown a room and felt quite happy about it, but then we were told they could not accept him because he had borderline personality disorder. One would have thought that a social worker, working in this area with vulnerable people, would know this. So yet again his hopes were raised and then dashed.

By this point, as the social worker knew, my relationship with my son was very strained. We began to argue all the time, and I went from being an outgoing and fun person to someone who didn’t sleep, was very tearful and extremely stressed. Like my son, I felt I was going down the same path of wanting to give up – I wanted to climb into bed and never wake up. I was assessed for carer support, but I didn’t need money –I NEEDED TREATMENT FOR MY SON. If someone had taken us seriously I feel we would never have been allowed to get into this awful situation. In the end I saw a counsellor whom I found and paid out of my own money. In all these years I have had no support whatsoever. I was not told how to deal with personality disorder; all I have gleaned is through books that I have found by searching on the web and purchasing myself.

Finally in 2004 after several failed attempts of gaining appropriate treatment –which included brief and ineffective sessions of CBT with poorly trained therapists whose expertise extended no further than a cup of tea and a chat and giving him photocopies from books to read – and continued episodes of self-harm and overdose, his consultant psychiatrist, who had expressed his own frustration that my son wasn’t making progress despite the fact he had never been offered any significant inpatient treatment, informed us in a very offhand way that ‘there may be somewhere that can help you, we have just sent someone here, just don’t know what else to try, this is the last thing’.

This ‘last thing’ turned out to be a therapeutic community run on democratic lines for people with severe personality disorder. After several agonising months of waiting my son was accepted in the summer of 2005 for the year-long programme.

We have found out since that the CMHT had in fact been sending patients there for a number of years and that it did not cost them a penny. This infuriated us because my son was told he could not access treatment due to local PCT funding issues. I feel that the consultant wasted a good 10 years of my son’s life through ineptitude and prejudice.

The therapeutic community helped my son to gain a sense of who he is and work through the pain of the abuse he suffered as a child. This was something he was never allowed to express in all the previous years because his consultant psychiatrist said it wasn’t good to go over the past. It was a very challenging regime but it is a testimony of his will to succeed that he got through the year at the therapeutic community. I am very proud of him. My son’s stay there changed his life for the better and immediately after his release he was extremely hopeful. For the first time since I had known him, I could hear his enthusiasm and optimism for life loud and clear. He was confident, had self-esteem and made plans for the future, registering at our local college for a course, working towards some qualifications in art therapy. I was so delighted and relieved that at last, at the age of 40, he could begin to lead a better life.

In that year I also went into therapy, which I continue to this day and have funded by myself, to try and unravel what had gone on in those past years, to come to terms with my son’s adoption, his abuse by his adoptive parents and our relationship. I slowly began to get my life back, and to understand what my son’s diagnosis actually means. I have read and researched so much and I have made new friends and been happier than I have been in years. Above all I have learnt to make boundaries, which I have tried hard to stick to since my son’s discharge. This has led to my son having a lot of ill feeling towards me, which I find very distressing. However in therapy I am learning to deal with this. I can only hope in time he will come to see that the decisions I made about him living and working independently from me will serve him better in the long run.

So finally there seemed to be a light at the end of the tunnel, but we were proved wrong.

The therapeutic community offered outreach support, a weekly meeting held in London for 6 months, and they also put together a care package of support to help my son through the initial release period and help him sustain the massive gains he had made. They liaised with our local CMHT and consultant psychiatrist, and his CPN (whom my son had not met before) attended two CPA [care programme approach] meetings to make sure everything was in place prior to his discharge and ready for his aftercare. They advised his consultant that he should remain on an enhanced CPA to help him through the initial period post-discharge. But in their ignorance they denied him this, withdrew the CPN in the first week after he left the therapeutic community, and said that my son had made improvements and lowered his CPA level. He was not given a key worker or social worker. He was denied access to an emergency phone support network and told to make an appointment to see his GP if he felt suicidal. We tried to complain and saw our local MP in the hope that his intervention would effect a turn around. The staff at the therapeutic community requested a meeting with the CMHT to try to persuade them to reconsider their disastrous decision to ignore their recommendations. This was immediately refused and the week that my son was discharged the CMHT told him they no longer wanted him on their books. They said that because of his improvements they had nothing more to offer. The consultant even challenged the legitimacy of personality disorder as a real diagnosis telling my son he had to look after people with real mental illnesses and that there was no clinical evidence that he would ever fully recover. My son requested another consultant, but this person said the same kinds of things.

Since then my son has floundered. He has started to drink and self-harm again and last summer took a very serious overdose. He gave up college because his diagnosis leaked out and certain members of staff started to treat him differently. He fought extremely hard against all the odds to keep going without medication and with the support of the friends he made at the hospital.

Then we found out that at the time he was discharged from the therapeutic community the PCT had set up a personality disorder community support project about 10 minutes’ walk from my son’s flat. The CMHT had failed to mention this even though in a meeting with the therapeutic community they were asked if any such services were available in the area, as the therapeutic community was aware that at that time PCTs where being given funding to set them up in most areas. To date my son has not been offered a place there. At one time he paid to see a therapist for weekly sessions at a local counselling centre; when he told them of his diagnosis the therapist terminated the therapy.

I was trying to keep to my boundaries of supporting him to live independently but the fact that he was receiving no support from the local CMHT only made me feel compelled to help. This was driving him back to me, something he didn’t want, but there was nobody else. All the professionals have advised us about us keeping healthy boundaries, which we have tried to do, but it’s extremely difficult for my son who has no network of support. He has the friends he made in the therapeutic community, but sometimes this only adds to his anger and feelings of neglect because they live in areas that offer far more support. If he had received help and support from the appropriate channels I feel our relationship would now be stronger. However, it’s falling apart because he feels I neglected him when he needed me.

Recently he has been offered 12 weeks of therapy by the head of the psychology department of our local trust. We believe this is a result of our official complaint that is still ongoing. He also applied for an art foundation course at the same college but was rejected. He was told that with his diagnosis he would not cope. He ended up doing a pre-foundation course, which is so elementary that he is unstimulated by it. His tutors could see he wasn’t being stretched and his talents far exceeded the basic lessons.

It seems that whichever way he turns he is blocked by prejudice and outmoded beliefs. At this present time feelings of hopelessness permeate his waking hours and his extreme anger has returned. With two recent suicide attempts I have to face the fact that one day he may take his life. This would be such a tragedy for such a loving, caring man who is torn apart and struggling without help and understanding. He wants to stand on his own two feet and is not allowed to. He was so close to having a real life and through wilful neglect he is sliding back to how he was before.

Only through public awareness and the education of professionals in all areas will people suffering from this disorder get the real help and support they need. The biggest issues for both my son and me is being heard, understood, and having one’s feelings validated. I also believe that it is valuable for professionals to hear the carer’s views on the disorder. With help, education and support, carers could be an even greater asset than they already are and be properly recognised for the support that they give.

My son has a long way to go and sadly has slipped back for now, but he has made big strides forward since his stay in the therapeutic community and he has the confidence to fight for his right to appropriate care and support.

4.3.1. Introduction

A review of the qualitative literature was conducted to illuminate the experience of people with borderline personality disorder in terms of the broad themes of receiving the diagnosis, accessing services and having treatment. It was recognised by the GDG that the search of the qualitative literature would probably not capture the breadth of service user experience, which may include considerable periods when people with borderline personality disorder are not in treatment. It should be noted that the qualitative evidence was limited with regards to the treatments reviewed, with an emphasis on DBT, and very little on therapeutic communities to support the positive statements made in the personal accounts above. The literature on self-harm was not reviewed for this guideline (see the NICE guideline on self-harm [NCCMH, 2004]).

4.3.2. Evidence search

In order to draw on as wide an evidence base as possible the GDG asked the clinical question: what is the experience of people with borderline personality disorder of care in different settings?

The most appropriate research design to answer this is descriptive material collected from the first-hand experiences of service users, either from one-to-one or group interviews or focus groups, or from surveys. This kind of material can either be presented in a fairly ‘raw’ state or it can be subjected to analysis using a theoretically driven qualitative methodology, such as grounded theory or discourse analysis.

In order to source such material, a search for published studies was undertaken which was supplemented by a search of the grey literature. The electronic databases searched are given in Table 4. Details of the search strings used are in appendix 7.

Table 4

Databases searched and inclusion/exclusion criteria for studies of inpatient care.

Ten studies were found that contained material relevant to the clinical question (see Table 5).

Table 5

Studies of service user views of services.

4.3.3. Diagnosis and stigma

The experience of receiving the diagnosis of borderline personality disorder and issues surrounding the ‘label’ and the stigma associated with it were reported by six of the included studies.

Horn and colleagues (2007) summarised the results of semi-structured interviews conducted with five service users with a diagnosis of borderline personality disorder, focusing on their understanding of the diagnosis, how they thought it had affected them, their view of themselves and others’ views of them. The following themes were identified.

Knowledge as power. For service users this was both positive and negative. Knowledge of the diagnosis and professional opinions was experienced as power, both for the service user and for others. For some the diagnosis provided a focus and sense of control, for example the ‘label’ could provide some clarity and organisation of the ‘chaos’ experienced by the service user. However, for others, who had been given little information or explanation about the diagnosis (and what information they were given tended to be negative), the diagnosis represented knowledge withheld and the viewing of others as experts.

Uncertainty about what the diagnosis meant. While for some service users the diagnosis led to a sense of knowledge and control, for others it was not useful and too simplistic. It did not appear to match their understanding of their difficulties, and service users were left feeling unsure whether they were ill or just troublemakers.

Diagnosis as rejection. Some service users described diagnosis as a way for services to reject them and withdraw from them. This judgement was accepted and internalised by some service users, which led to service users in turn rejecting services if they were offered at a later stage.

Diagnosis is about not fitting. Some service users felt that that diagnosis was being used because they did not fit into any clear categories. They spoke of the diagnosis as a way for services to say that they could not do anything for them – a ‘dustbin’ label.

Hope and the possibility of change. Feelings of hope were related to the treatment a service user was offered. Inevitably if they were told that they were untreatable this led to a loss of hope and a negative outlook. The name of the disorder itself suggested a permanency, and service users questioned the use of the ‘label’ itself as a result, feeling that different terminology could engender more hope. Service users also found that they gained most support and hope from people they could trust and who treated them as a person and not as a diagnosis/label. For some these relationships led to a position where they felt able to question the diagnosis.

Summary. Horn and colleagues (2007) suggest that clinicians need to be aware of and sensitive to the impact of the diagnosis; clinicians should engage in discussion about the diagnosis and focus upon what may be useful to the individual user; clinical interactions should be characterised by trust and acceptance; service users should have clear communications about what ‘borderline personality disorder’ means; and service users should receive the message that people do move on from this diagnosis. Finally, clinicians should listen to users’ own descriptions of their difficulties.

In a study by Crawford and colleagues (2007) diagnosis caused service users to have mixed views, largely due to the implications for accessing services. Many service users reported being denied services because of the diagnosis. Some felt that the terminology used was negative (having a ‘disordered personality’), that stigma was attached to the diagnosis, and that they were stereotyped and judged by doctors. Some service users thought it was unfair to be labelled with such a derogatory term when they felt that the disorder had developed due to abuse at the hands of others – diagnosis made them feel like victims again. Others felt quite sceptical about the diagnosis having received a number of different diagnoses during their history of accessing services.

However, some service users welcomed the diagnosis, feeling that the symptoms fitted them quite well, and feeling some relief at having a label they could identify with. Service users were more positive about the diagnosis where the services they were accessing had a positive approach to the disorder and where they had gained a sense of shared identity with other service users (Crawford et al., 2007).

In a study by Haigh (2002), which summarised the thoughts of fourteen service users on services for people with personality disorder in south England and the Midlands, people with personality disorder tended to feel labelled by society as well as by professionals after receiving the diagnosis. There was a feeling that many professionals did not really understand the diagnosis, instead equating it with untreatability. Other professionals did not disclose the diagnosis to the service user. Once the diagnosis was recorded, service users felt that the ‘label’ remained indefinitely and often felt excluded from services as a result. They described having the label as being the ‘patients psychiatrists dislike’ and felt that they were being blamed for the condition. For others, though, receiving the label was a useful experience, giving some legitimacy to their experience and helping them begin to understand themselves. Many felt that there was little clear information available about the diagnosis.

In a study by Ramon and colleagues (2001) of 50 people with personality disorder from Essex, the meaning of the term revealed a wide range of views from ‘a life sentence – untreatable – no hope’, to ‘haven’t got a clue’. The majority felt that they did not really know what the term meant (26%), where as 22% described it as ‘a label you get when they don’t know what else to do’ and 18% referred to the meaning ‘as being labelled as bad’. Eighteen percent referred to the diagnosis as being ‘indicative of mood swings’. Service users’ own descriptions of their problems tended to correspond with an additional diagnosis, most commonly of depression and severe anxiety (36%). Service users preferred not to use the term personality disorder and found that the diagnosis led to negative attitudes by staff across a range of agencies and a refusal of treatment. Only 20% perceived the diagnosis to have led to an improvement and better treatment. A proportion of service users also felt it would be helpful if the term ‘borderline personality disorder’ were changed.

In Nehls (1999), 30 people with borderline personality disorder were interviewed to establish what it means to live with the diagnosis. Service users reported feeling that professionals held preconceived ideas and unfavourable opinions of people with a diagnosis of borderline personality disorder. They felt that they were being labelled, rather than being diagnosed. They struggled with the ramifications of having a negative label rather than the diagnosis itself, such as it affected the delivery of mental health services and also other forms of healthcare. Most of the people felt that they were in a paradox, in that they felt that they fitted the criteria, yet experienced the diagnosis as having no beneficial purpose in guiding treatment.

Self-harm and suicide attempts were commonly reported among participants interviewed by Nehls (1999). They found the view of self-harm as manipulation to be unfair and illogical, revealing an underlying prejudice and leading to a negative response to such behaviour by clinicians. Such attitudes might mean that the reasons underlying the self-destructive behaviour are missed. Service users felt it was more productive and accurate to view self-harm as a means of controlling emotional pain and not as a deliberate attempt to control others.

In a study by Stalker and colleagues (2005), which elicited the views of ten people with a diagnosis of personality disorder and analysed the data using a grounded theory approach, half felt that the term ‘personality disorder’ was disparaging. However one male participant thought that it accurately described his problems: ‘It doesn’t particularly disturb me. I don’t see any problem because that is exactly what I suffer from – a disorder of the personality’ (Stalker et al., 2005).

4.3.4. Services

Six of the included studies reported service user experience of accessing services, including specialist services, staffing issues, and of the community-based pilot services for people with personality disorder.

4.3.5. Treatments

Two studies reported on experiences of group psychotherapy for people with borderline personality disorder and there were two on DBT.

4.3.6. Personal coping strategies

One study by Stalker and colleagues (2005) reported on personal coping strategies. Participants in the survey recognised a number of strategies they employed to help them cope, the most common of which were: visiting a mental health resource centre; talking to a professional or a partner; keeping active; doing exercise; going to bed; medication; ‘keeping yourself to yourself’; ‘fighting the illness’; use of drugs and alcohol; overdosing; and cutting. The participants were fully aware that some of these activities were harmful, but felt they had no alternatives: ‘When I am feeling really bad, [drinking is] the only thing that really blots out the memories’ (Stalker et al., 2005).

4.3.7. Public awareness and education

One study by Haigh (2002) reported on public awareness and education about personality disorder. It was felt by service users that more education about mental health difficulties should be provided in schools to reduce stigma, to educate about vulnerability and to teach students how to seek appropriate help if they experienced difficulties. Leaflets in GP surgeries and support groups for families/carers were also suggested. Service users also felt that it was important that people became aware that a diagnosis of personality disorder ‘doesn’t mean you’re not a nice person’.

4.3.8. Summary of helpful and unhelpful features

Helpful features identified by service users (Haigh, 2002) included: early intervention before crisis point; specialist services; choice of treatment options; care tailored to the individual; therapeutic optimism and high expectations; developing service users’ skills; fostering the use of creativity; respecting a service user’s strengths and weaknesses; clear communication; staff that were accepting, reliable and consistent; supportive peer networks; shared understanding of boundaries; appropriate follow-up and care; and making use of service users as experts in developing services and staff training.

Unhelpful features noted by service users (Haigh, 2002) included: availability of services determined by postcode; services only operating in office hours; lack of continuity in staff; staff without appropriate training; treatment decided only by diagnosis and/or funding; inability to fulfil promises made; staff that were critical of service users’ expressed needs; staff only responding to behaviour; negative staff attitudes; rigid adherence to a therapeutic model even when it is unhelpful; long-term admissions; use of physical restraint, obtrusive levels of observation, inappropriate use of medication, and withdrawal of contact used as sanction.

According to service users interviewed by Haigh (2002), services could be improved if: professionals acknowledged that personality disorder is treatable; they received a more positive experience on initial referral as this would make engagement with a service more likely; if the ending of a therapeutic relationship was addressed adequately; and if services were not removed as soon as people showed any signs of improvement, because this tended to increase anxiety and discourage maintenance of any improvement.

4.4.1. Introduction

When a person is diagnosed with borderline personality disorder, the effect of the diagnosis on families and carers is often overlooked. However, a recent study has shown that psychological distress among the families and friends of people with borderline personality disorder has been likened to the distress experienced by carers of people with schizophrenia (Scheirs & Bok, 2007).

The use of the term ‘family’ in the literature generally refers to parents, siblings, spouses and children. This guideline uses the term ‘family/carer’ to apply to all people who have regular close contact with the person.

A systematic search for literature on family/carer needs, including interventions, was not undertaken on the advice of the GDG since little empirical research exists. This section therefore gives a narrative review of the available evidence and expert consensus views.

4.4.2. Do the families/carers of people with a borderline personality disorder have specific care needs?

It has been suggested (expert opinion) that families of people with a borderline personality disorder could experience what Hoffman and colleagues (2005) have described as ‘surplus stigma’, which is stigma over and above that experienced by families/carers of people with other mental illnesses. Unfortunately, there is scant empirical evidence available to support or refute this hypothesis.

Scheirs and Bok (2007) administered the Symptom Check List-90 (SCL-90) to 64 individuals biologically related (parents or siblings) or biologically unrelated (spouses or friends) to people with borderline personality disorder. The group had higher scores on all symptom dimensions of the SCL–90 than the general population. There was no significant difference between those who were biologically related to the person with borderline personality disorder and those who were not.

Hoffman and colleagues (2005) assessed burden, depression, guilt and mastery in families of people with borderline personality disorder. Forty four participants (representing 34 families) participated in a Family Connections programme (the outcome of this study is described in section 4.4.3) and found significant burden as measured by the Burden Assessment Scale and Perceived Burden Scale, significant depression as measured by the Revised Centre for Epidemiological Studies Depression Scale, significant grief as measured by a Grief Scale, and low levels of mastery as measured on the Mastery Scale. It is important to note that there was significant variation in scores. This study was replicated by Hoffman and colleagues (2007b) with 55 participants who found that mean scores on the measures of burden, guilt and depression were consistent with those in the previous study.

Families/carers of people with borderline personality may have needs that are at least equivalent to families/carers of people with other severe and enduring mental health problems.

4.4.3. What intervention/support is helpful to families/carers of people with borderline personality disorder?

No RCTs of interventions specifically aimed at families/carers of people with borderline personality disorder were identified from the search for RCTs described elsewhere in this guideline, and an additional systematic search was not undertaken on the advice of the GDG. There was therefore little empirical evidence to review.

Interventions for families of people with borderline personality disorder have been strongly influenced by the literature drawn from family intervention treatments for other disorders (for example, schizophrenia). This literature has indicated that carers find psychoeducation and information most helpful (Dixon et al., 2001).

However, research by Hoffman and colleagues (2003) provides a note of caution to those who advocate interventions of this type. They assessed 32 family members for their knowledge of borderline personality disorder. Knowledge was then correlated with family burden, depression and expressed emotions. Contrary to expectations greater knowledge about borderline personality disorder was associated with higher levels of burden, depression, distress and hostility towards the person with the disorder.

Berkowitz and Gunderson (2002) have piloted a multi-family treatment programme strongly influenced by psychoeducative approaches used in schizophrenia. However no outcome data were reported.

Hoffman and colleagues (2005) conducted a study examining the impact of the Family Connections programme, which aims to reduce burden, grief, depression and enhance mastery in families of people with borderline personality disorder. The programme is a 12-week manualised education programme that is strongly influenced by DBT principles. The programme also had a strong educational component in which information is provided about borderline personality disorder and research. There is a great emphasis on learning new skills (coping and family skills) and the programme aimed to foster social support. This study had 44 participants (34 families) and the families were evaluated pre-intervention, post-intervention and at 6 months follow-up. Participants showed reductions in burden, grief and enhanced mastery. There was no significant difference in depression. The results were maintained at follow-up.

Hoffman and colleagues (2007b) was a replication of the 2005 study. Fifty five participants took part in this programme. They were assessed using the same measures as the 2005 study: pre- and post-intervention and at 3 months’ follow-up (rather than 6 months in the previous study). As in the previous study, participants showed improvements in grief, burden and mastery. There was also a significant reduction in depression. While these findings are of interest and this intervention shows promise, clinical trials examining the effectiveness of this intervention have not yet been published.

There is a lack of high quality empirical evidence on interventions for families/carers of people with borderline personality disorder, although emerging evidence suggests that structured family programmes may be helpful. Hoffman and colleagues’ (2003) study provides a cautionary note about giving information. Their findings suggested that more information alone could be associated with more distress.

4.4.4. Do families/carers through their behaviours and styles of relating influence clinical and social outcomes or the well-being of people with borderline personality disorder?

This clinical question needs to be explored sensitively. Families/carers could have understandable concerns with respect to this question and may feel that they are being unfairly blamed for the person’s problems.

Earlier chapters (see Chapter 2) have highlighted the high correlation between childhood adversity and borderline personality disorder. These findings are challenging to families caring for people with borderline personality and it is important not to assume that all family environments are ‘toxic’ and have ‘caused’ the disorder.

There are some studies suggesting that the current family environment could influence the course of borderline personality disorder. Gunderson and colleagues (2006) explored predictors of outcome in borderline personality disorder. In this study 160 patients were recruited and followed up for 2 years at 6, 12 and 24 months. Findings should be interpreted with caution because of the nature of the measures used. However, they concluded that alongside baseline psychopathology and history of childhood trauma, present relationships was also a predictor of outcome after 2 years. The longitudinal Interval Follow-Up Evaluation was used to assess impairment in relationships with parents, spouse, siblings and children.

A significant amount of research into the impact of the family environment has focused on parental hostility and involvement and the course of a disorder. These constructs are components of expressed emotion. Expressed emotion and its impact on recovery for people with schizophrenia has been more extensively researched (see Dixon and colleagues [2001] for review). Within the borderline personality disorder literature there was only one study on expressed emotion.

Hooley and Hoffman (1999) followed a group of 35 people with borderline personality disorder for 1 year post-discharge. They assessed expressed emotion using the Camberwell family interview. They found no association between hostility and criticism and re-admission rates in borderline personality disorder. Even more surprising, and contrary to research in psychosis, was that people with borderline personality disorder had fewer admissions in families that scored higher on expressed over-involvement.

In summary, there is not enough evidence to confidently answer this question. It appears that the relationship between the family environment and the prognosis of borderline personality disorder is complex and multi-dimensional (Lefley, 2005). There is some tentative evidence that families of people with borderline personality disorder could interact in ways that are unhelpful for the person with borderline personality disorder. However, Lefley (2005) cautions against overly blaming families and suggests that the literature does not fully consider temperamental vulnerabilities in people with borderline personality disorder.

4.4.5. Are there interventions/support for families/carers of people with borderline personality disorder that are helpful in altering social outcome and well-being of a person with borderline personality disorder?

There are no empirical studies to review in this section. The literature is restricted to expert opinion and consensus.

4.4.6. Overall clinical summary

There is little evidence to answer clinical questions relating to support for families/carers, although families/carers of people with borderline personality disorder appear to have significant needs. Consequently, it would not be prudent to make robust clinical recommendations. Further research is needed to build on the emerging evidence suggesting that structured psychoeducation programmes that also facilitate social support networks may be helpful for families. There is an absence of research into whether family interventions alter the social outcome and welfare of a person with borderline personality disorder.

4.6.1. Access to services

4.6.1.1.

People with borderline personality disorder should not be excluded from any health or social care service because of their diagnosis or because they have self-harmed.

4.6.2. Developing an optimistic and trusting relationship

4.6.2.1.

When working with people with borderline personality disorder:

• explore treatment options in an atmosphere of hope and optimism, explaining that recovery is possible and attainable
• build a trusting relationship, work in an open, engaging and non-judgemental manner, and be consistent and reliable
• bear in mind when providing services that many people will have experienced rejection, abuse and trauma, and encountered stigma often associated with self-harm and borderline personality disorder.

4.6.3. Involving family/carers

4.6.3.1.

Ask directly whether the person with borderline personality disorder wants their family or carers to be involved in their care, and, subject to the person’s consent and rights to confidentiality:

• encourage family or carers to be involved
• ensure that the involvement of families or carers does not lead to withdrawal of, or lack of access to, services
• inform families or carers about local support groups for families or carers, if these exist.

4.6.4. Principles for healthcare professionals undertaking assessment

4.6.4.1.

When assessing a person with borderline personality disorder:

• explain clearly the process of assessment
• use non-technical language whenever possible
• explain the diagnosis and the use and meaning of the term borderline personality disorder
• offer post-assessment support, particularly if sensitive issues, such as childhood trauma, have been discussed.

4.6.5. Managing endings and transitions

4.6.5.1.

Anticipate that withdrawal and ending of treatments or services, and transition from one service to another, may evoke strong emotions and reactions in people with borderline personality disorder. Ensure that:

• such changes are discussed carefully beforehand with the person (and their family or carers if appropriate) and are structured and phased
• the care plan supports effective collaboration with other care providers during endings and transitions, and includes the opportunity to access services in times of crisis
• when referring a person for assessment in other services (including for psychological treatment), they are supported during the referral period and arrangements for support are agreed beforehand with them.