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National Collaborating Centre for Mental Health (UK). Bipolar Disorder: The Management of Bipolar Disorder in Adults, Children and Adolescents, in Primary and Secondary Care. Leicester (UK): British Psychological Society; 2006. (NICE Clinical Guidelines, No. 38.)

5SERVICE USER AND CARER EXPERIENCE OF BIPOLAR DISORDER

5.1. INTRODUCTION

This chapter is based around the first-hand experience of people with bipolar disorder, family members and carers. It aims to relate Chapter 4 and the chapters on treatment and process and provision of care to a service user and carer context. The experiences are presented in three ways: by testimonies (both full and excerpted), by excerpts from interviews and from a survey conducted by MDF The BiPolar Organisation, formerly the Manic Depression Fellowship (MDF) (2004). The views represented here are illustrative only and are not intended to be representative of the experience of all people with bipolar disorder and their carers.

The writers of the testimonies were contacted primarily through MDF The BiPolar Organisation and through other service user and carer organisations and asked to write about their experiences of diagnosis, experience of treatment, relationship with psychiatrists or other healthcare professionals, continuity of care, experience of crisis, and self-help and support groups. Some of the questions they were asked to consider within these categories emanate from themes outlined in the qualitative study of 49 people with bipolar disorder by Highet and colleagues (2004).

The service user representative on the GDG also conducted short interviews with people with bipolar disorder on the specific themes above. Short extracts from MDF The BiPolar Organisation survey (2004) have also been used with permission.

5.2. TESTIMONIES FROM SERVICES USERS

5.2.1. Testimony 1: Robert

As a schoolboy (I am now 32), I was very successful academically, popular and sporty, but I’d always been a bit of a worrier. Looking back, I think I first experienced symptoms of bipolar disorder in the sixth form at my grammar school, withdrawing socially and experiencing bouts of feeling low, sometimes bursting into tears for no apparent reason.

I first fell seriously ill while travelling in south-east Asia on a year off between school and university, aged 19. I’d been feeling lonely and low for some time. Although I feel sure I would have fallen ill sooner or later anyway, my first high appeared to have been triggered by me rather stupidly swallowing a lump of cannabis before boarding a flight from Goa to Delhi in India. I arrived a paranoid wreck. Over the next few days my mood improved and all of a sudden I was the life and soul of the party and was having a great time with the friends I was travelling with.

A pattern quickly established itself. I’d be up for 8 to 10 days and then down for 8 to 10 days, as regular as clockwork. With each cycle my mood swings became more and more extreme. When down, I was catatonic and barely able to string two words together; speaking to my travelling companions became an ordeal. When high I would be charming, full of energy and enthusiasm, touring India in high spirits.

While in a depressed phase, miserable and bewildered as to what was happening, I managed to gather the wherewithal to book a flight home after 6 months abroad. By the time I arrived back at Heathrow to be met by my parents, I was as high as a kite. My parents were dumbstruck. I was talking ten to the dozen and told them I only needed 2 hours’ sleep a night.

As weeks went by without treatment, my mood swings became even more extreme. When manic, I started spouting poetry spontaneously, talking gibberish, sleeping around and charging about the country in a state of euphoria.

The thing about mania that I’ve always found hardest to deal with afterwards, notwithstanding the shame and embarrassment, was the religious delusions. Despite not having had a Christian upbringing, when seriously manic I read religious significance into anything and everything. Where other people with mania might think they’re Tony Blair or a multi-millionaire, I was on a divine mission, seeing God personified in a black dog and the eyes of a cat. At one point God seemed to ‘stare’ back at me when I just glanced at the pavement.

Eventually I was sectioned and forcibly sedated – the week I was due to start at university. It was a very damaging experience. I felt betrayed by my family, who were at their wits end and wanted me to have hospital treatment. As I saw it the only advantage of being in hospital was that I was prescribed a mood stabiliser, lithium. I don’t think I would have hurt myself or anyone else. I spent my time on the ward dancing around thinking I was the Dalai Lama and painting wildly. I felt very angry about detention. I think it really should be a last resort when all else has failed.

After a week or so, my mood had flattened out and I was released as if I’d make a full recovery. I went straight into a severe depression and the cycling continued for some months.

My start at university was deferred by a year. It wasn’t until the end of my second year that my mix of medication was eventually got right. The lithium and carbamazepine stopped the cycling fairly early on. But it took my psychiatrist 2 years to raise the dosage of the lithium to 800 mg, which alleviated my persistently low mood. In retrospect that was 2 years too long.

I graduated from university and then trained and qualified as a journalist a year later. At some point, in agreement with my psychiatrist, I cut back on my medication. I now know that this resulted in a slow and imperceptible slide into depression. At the time, I just thought I was going through a difficult patch because I was stuck at home convalescing with severe back pain.

It seems unbelievable now, but looking back it appears I remained in this mild to moderate depressed state for about 6 years. My mood was stable. I wasn’t cycling because of the lithium and carbamazepine, so I didn’t realise I was ill. I assumed I was well because I was on what I thought was the optimum combination of medication for me. I just came to think I was miserable by nature.

Over this time, I developed lots of physical problems. My back pain got worse and I developed neck pain and mysterious tingles in the arms and legs. It later became apparent that these physical problems resulted from muscular trigger points all over my body caused by the depression. Somehow I managed to hold down two jobs working in journalism for 5 years despite being desperately unhappy. But then I took a high-pressure job in London. I hated it and my mood worsened. I felt hopeless about the future and decided that life was not worth living – a reasonable conclusion to draw after feeling so awful for years.

I survived a massive lithium overdose. My suicide attempt finally prompted my psychiatrist into taking some action and he prescribed mirtazapine. This was a revelation. It immediately sent me into psychotic rapid cycling again, but at the same time it dawned on me that I had in fact been unknowingly depressed for ages. I now could tell that my mood, even though it was still up and down like a yo-yo, was ‘on average’ much better than it had been. As my mood improved, my physical symptoms of depression – the aches and pains – began to drop away as if by miracle.

Again it took more than a year to stabilise my mood at a ‘normal’ level for me. I first tried lamotrigine with lithium and then quetiapine with lithium instead. The quetiapine was very effective.

I was very angry with my psychiatrist, who had failed to recognise that I was suffering from depressive symptoms over such a long period of time. He just told me, rather unhelpfully, that I needed to ‘love myself more’. To be fair, several previous psychiatrists I’d seen over the years had also missed the signs of depression – perhaps because I was coping, holding down a job and in a relationship. I hadn’t even recognised I was depressed myself. But I do wish my psychiatrists had been more aggressive and pro-active in my treatment. It might have saved me from wasting 6 years of my life.

I am now married with a baby boy and starting a new job; I feel a lot better. I’m still prone to the occasional drop in mood and I still get anxious easily. Another characteristic I attribute to the illness is my appalling memory. Lots of people complain of a bad memory, but mine is significantly worse than anyone else’s I know. It limits my ability to do my job properly and I’m considering coming off lithium to see if that helps.

For me, the most important thing about my treatment is having a good relationship with a psychiatrist in whom you have confidence – someone who will take a full history, listen to what you have to say and then lay out all the options with all the pros and cons. Being available on the phone in a crisis is also much appreciated.

5.2.2. Testimony 2: Jane

I first became depressed and suicidal in 1980 at the age of 17 (I am now 42). I had a bout of glandular fever and had just done my A levels. I didn’t feel that I could talk to my parents because my grandmother had a long-term mental illness. I had heard how miserable all this was and I very much felt that I was letting the side down by getting ill too. However, my parents persuaded me to go to my GP who called them anyway and suggested that I might have bipolar disorder (this idea fell by the wayside). I was referred to a psychiatrist at the hospital who diagnosed depression. He wanted to admit me but I refused, so I ended up in a day hospital that consisted almost entirely of confused older patients.

Against everyone’s advice I went to university that autumn. I was taking a tricyclic antidepressant, lorazepam and some kind of sleeping pill and spent most of my first year getting almost no sleep, drinking heavily, partying wildly, sleeping around and for several weeks not eating because I’d convince myself that I didn’t need any food. I was seeing a consultant psychiatrist and a GP but just told them I was fine. At some point I stopped taking the pills. As the year went on I became depressed again, which as before I tried to conceal. I painted my face with green eye shadow and was convinced I was invisible. I couldn’t study anymore because the words swam around on the page. Finally, I took a handful of sleeping pills mixed with alcohol, and then screamed because I’d forgotten to write a note. Then I threw up. The next time I saw the psychiatrist I told him that I was depressed and he admitted me to hospital for about a month and put me back on the medication. Conditions on the psychiatric ward were terrible, but I was allowed to go to the university to take my exams.

Over the next 16 years I got depressed again a few times. On one occasion I went to a place that offered free counselling for about 6 months, which I don’t think helped me get over the depression any quicker, but helped me survive it. On another occasion I went to the doctor but she said that I wasn’t depressed, just having a hard time coping with two young children.

In the summer of 1997 I got depressed again quite quickly. One weekend after a row with my husband I got really hyper in a very unpleasant sort of way, couldn’t sit still, was very angry, drove at 100 mph and was hallucinating. In October I was suicidal to the point of making plans and went to see my GP. She was extremely sympathetic and prescribed paroxetine, which made me feel a bit better, but things never got back to normal. I did an online manic depression test, scored high and laughingly dismissed the result. In April 1998 things got steadily weirder. I couldn’t stop mentally singing songs, couldn’t think straight and was obsessively sending emails. I read messages into everything: clouds, road signs and so on. At a social event I was mesmerised by a flashing light, couldn’t sit still, saw a mushroom cloud which I thought foretold a death in the family and thought the pavement was blue. I didn’t tell anyone. By now I was almost certain I had bipolar disorder, but I hoped it would go away.

Things got scary. Crows were following me. There was a TV camera in my head. Both of these were organised by a malevolent Celtic goddess who was trying to compel me to kill myself. I couldn’t think straight at all, couldn’t concentrate. I was turning into a bird, I was turning into the phoenix, the phoenix could save the world, the phoenix could save the world by burning to death, the phoenix could save the world through the internet, the phoenix was poisoning the world through the internet and needed to cut her hands off so she couldn’t type any more. At this point I admitted that I really did have to seek help. The doctor I saw was very calm, soothing and practical, and told me I was hypomanic and should go to hospital. I was told I would only be assessed, but I was admitted for a couple of weeks. I was given medication (without any discussion) and told that I had bipolar disorder. I was confused a lot of the time, particularly about which doctor was in charge of me. They put me on carbamazepine, haloperidol and, for the first few days, zopiclone. I did lots of painting, wrote pages of complete gobbledy-gook, and co-operated pretty well.

For the next couple of years I kept getting a few days of hypomania here or there, and then bouts of sudden and severe depression for which I was hospitalised (another six admissions varying from 2–6 weeks). I always resisted going into hospital but never quite got sectioned. I didn’t always get on well with the staff at the hospital; some of them made me feel like a nuisance and some of them didn’t do their jobs properly (for example, nurses supposedly on observation slept in front of the TV at night). The student nurses were often the most helpful and sympathetic. The ward was usually disorganised and I found it very stressful waiting for hours to see a doctor, missing activities or even meals because I was worried I would miss them. I was also angry that there were no occupational therapists on any of my admissions from 1998 onwards.

By now I had a different psychiatrist, with whom I got on very well, and a CPN who was fantastic and reliable. I stayed on the haloperidol, but after a while they tried tapering off the carbamazepine and started me on several other drugs (lithium and paroxetine) which made me worse. In the end I was given a high dose of lamotrigine and since then I have been out of hospital for about 4 years. Eventually I stopped taking the haloperidol because even at a very low dose it made me feel dopey.

During this period I also attended a self-management course run by my GP, had cognitive behavioural therapy (CBT) for 6 months as part of a trial and, on the advice of my psychiatrist, started going to the local self-help group (MDF The BiPolar Organisation). The course and CBT were quite good at helping me to identify when I was getting ill, the CBT helped me improve relationships with my family, and through MDF The BiPolar Organisation I was able to meet other people who’d been through the same experience. Neither the course nor the CBT helped me stay out of hospital at the time, but these days I am much better at dealing with the odd up or down day, and I wonder if without them I would still be spiralling out of control.

At the present time I am not seeing a psychiatrist or a CPN, which I am not very happy about. They didn’t even tell my GP they were discharging me. I feel that no one is keeping an eye on me except for the physical check from the practice nurse once a year. I was discharged on 1000 mg carbamazepine and 500 mg lamotrigine per day, but I’ve had a lot of trouble with side effects, particularly double vision and dizziness. My GP recently tried slow-release carbamazepine, which also helped and I’ve cut down the dose by 200 mg per day. Very occasionally if I get very anxious or panicky I take a clonazepam or haloperidol tablet.

I had to give up work during the period of repeated admissions, partly because my concentration was affected and partly because the pressure of having to be well enough for work and not coping made me stressed and depressed. I think giving up work and the exercise and fresh air involved in taking on an allotment have helped me a great deal (although I still have real problems with concentration and memory that considerably impair my daily life). I am also involved with MDF The BiPolar Organisation as a treasurer and feel that that is a good safety net.

Over the years, with so many admissions and illnesses, it has been a huge strain on my husband who would become very anxious. Now, however, he no longer panics if I seem a bit low. In recent years I have been quite open about my illness with my children and it doesn’t seem to worry them. These days I am mostly stable and free from physical side effects.

5.2.3. Testimony 3: James

I first became aware that I possibly had a mental disorder in my last year at university, aged 20/21 (I am now 32), when I had serious problems sleeping; it was the start of some strange behaviour, such as thinking that I could talk with birds and that I was infested with fleas. I would have times of great enthusiasm, but would also have awful times when I wouldn’t know what to do with myself. After a few nights of not sleeping at all, I saw a doctor and was given temazepam.

At university I visited a different doctor and was given another sleeping tablet and encouraged to see a counsellor, which I did on one occasion. I felt quite embarrassed to be going but it was good to talk. Coming to the end of university was a difficult time. I was in a state of indecision about my future and my parents were moving away. I felt rudderless and depressed, and was punching walls. Over the next few years a stable, but rather boring, job got me back on a more regular path but my depression and intermittent insomnia continued. When I was aged about 26/27, I was sent to see a consultant psychiatrist, but she concluded that the depression was not severe enough to need treatment. I wasn’t receiving any treatment for my insomnia at this time either. I have generally been able to present myself well to doctors and put a brave face on my problems.

I got married and trained to become a teacher when I was aged 27, but I still coped with regular insomnia and depression for another 3 years. My week would have a regular pattern: on Monday I would have to leave work as soon as the school day ended as I was tired and depressed. On Tuesday I would really get into things, work late and then not be able to sleep till about 3 or 4 in the morning sometimes. During the rest of the week I was in a bit of a fog of tiredness, but I would generally leave on Friday enthused by things. Saturday afternoon was the lowest point of the week.

After seeing a poster at the doctor’s describing the signs of depression, and feeling that I experienced nearly all of the signs, I mentioned this to the doctor and he prescribed an antidepressant (escitalopram). Apart from completely losing my sex drive, I was able to function well on this medication and was successful at work. It helped me sleep and I felt that I was on a more even keel. I stayed on this medication for 3–4 months.

While going through a difficult period in my marriage, I began to have mood swings. It was at this time that I read a book about bipolar disorder and thought it sounded like what I was experiencing, although I seemed to be rapid cycling. I saw a locum who put me back on escitalopram. I asked for an appointment with a psychiatrist, and had to wait 4 or 5 weeks for this. The appointment with the psychiatrist was very thorough and we discussed the possibility of bipolar disorder; the consultant said that I possibly had bipolar 3.11

After this, sleep became a problem again so the doctor stopped the escitalopram and put me on lamotrigine and zopiclone. (I stated my concern at stopping the escitalopram suddenly as I had to do it gradually last time, and it was only after he had received a letter from the psychiatrist that I was advised to stop the escitalopram gradually.) The first night on the change of medication was rather disconcerting. After taking the zopiclone I got ataxia and my wife had to help me upstairs. I also thought that I was getting visual disturbances. I was told that I could take zopiclone every other night, but on the night that I didn’t take it, I couldn’t sleep. I was concerned that I was getting a rash, and I was also having spotting on my eyes. I called NHS Direct, who in the end suggested that I go into hospital. The doctor checked my eyes and couldn’t see anything wrong, so I went to see my GP the next day. I was feeling in a bit of a state, exhausted from the night before and a bit at sea with the drugs that I was taking. My GP suggested that I go back to the hospital.

At the hospital I was interviewed by the charge nurse but no discussion was had with me about the effects of the medication I had taken. I was feeling very anxious and angry with the GP, who I felt had started all these problems off earlier in the week with the bad advice about stopping the escitalopram. I was then given a medical by a senior house officer (SHO), who asked me if I thought that I had any special powers. I replied that I was a Christian, which seemed to be significant to the SHO. (I feel much closer to God when I am feeling a bit elated.) I also told the SHO that the previous night I had felt a conviction that this day might be my last. This was tied up with my religious feelings.

In the end I was put on a section 5.4 under the Mental Health Act because I had tried to leave the hospital to stop my wife driving home. (I was worried that she might have an accident.) I then had an interview with the nurse and another doctor, but I was concerned because my rights were not discussed with me and I was not informed what being under section meant until the next morning. I was trying to write things down so that I had a record of the meetings and of what was being said. I asked to see my uncle, who is a doctor, but this was refused. At one point I said to the charge nurse that I felt that he was trying to wind me up and he said that he was.

I was eventually given 1 mg of lorazepam which made me feel much calmer. I was held over the weekend and met the consultant on the Monday. There was a large group of people who I hadn’t met before, consisting of at least one nurse, a student, two consultants and a phlebotomist. The consultant told me about the various possible treatments with medication and I read about them. She was keen to get me on an antipsychotic, which was hard for me to accept. I was feeling defensive and hard done by, and was not convinced at the time that I was psychotic. She felt that I was not co-operating with my medication so put me on a section 2 under the Mental Health Act. This was very distressing, so I contacted a mental health solicitor. At this point I had my first panic attack. (I had several more of these over the next few months.) The solicitor began to arrange for a mental health tribunal, but after a few days I was taken off the section. I stayed in hospital for 2 weeks in all. The consultant said that I was possibly suffering from bipolar II and I was put on lamotrigine for several months and olanzapine. Looking back, I realise that I was a bit psychotic and that this was my second psychotic experience, with my first occurring at the end of university.

After 3 weeks at home, I went back to work but was concerned about losing my job. I stopped the mood stabiliser, which made me feel I was in a permanent fug, and started escitalopram again, which allowed me to perform a lot better. I also have olanzapine when I am feeling high and zoplicone. I still have bad days, but on the whole I am functioning well and feeling happy for the majority of the time. My relationship with my consultant was not good to start with but is better now. I seem to be able to influence decisions about my medication, but I would have more confidence in her if she was more confident with her treatment. I get on very well with the nurse who comes and visits me every few weeks. She has given me some good advice and has helped me have more confidence in myself. But while it is helpful to have regular contact with someone, it is not a talking therapy, which I think would have been beneficial. (I am on a waiting list to see a psychologist.)

5.2.4. Testimony 4: Helen

While living in France I had two ‘breakdowns’ in my early thirties (I am now 43). I was told by a French psychiatrist that I would always be vulnerable, ‘like a vase that had cracked’ but was offered no diagnosis or explanation of how this might have happened or how I might try to make some sense of this experience, and offered no hope outside medication. I was sectioned on three occasions and, after an unnecessarily protracted period in a French asylum, my father had to come to get me out.

I returned to England and was diagnosed with bipolar disorder. With help from the plain commonsense approach of a locum psychiatrist, I felt that my hope of recovery could begin and I attempted to come to terms with what I now understood to be two manic episodes with psychotic features. I was enabled in this by England’s more forward-looking, client-centred, recovery-based approach in the community that offered hope, empowerment and support.

I would describe psychosis as like a waking dream and reality that merge, slowly leaving reality behind as you enter an increasingly frightening new ‘reality’ of seeing things and people that aren’t there and hearing voices that don’t exist telling you to do increasingly irrational, dangerous and injurious things. All this is tinged with ever-growing paranoia. As the psychosis takes hold, combined with a manic mood swing, it is possible not to feel hunger, not to need-sleep, not even to feel pain, as the body is whipped up to maximum motor output. The mind is racing at top speed, making impossible connections between events; the heightened euphoric emotions all combine together to direct some deluded ‘mission’. The ultimate height of mania is the adoption of a persona; mine tended towards the good ones: Mother Earth and God’s daughter as the second coming of Christ.

Having a diagnosis was supremely important. Despite the horrors of psychosis, it is more frightening not being told what the illness is and to live with the fear of something you know nothing about happening again, and for it to actually happen again. My psychiatrist could offer little practical help other than to mention MDF The BiPolar Organisation. I joined one of their local self-help groups and followed their self-management training course some years later. During this 6-week course, I learned how to recognise and cope with ‘episodes’. I learned there were others like me with the same illness and that people with bipolar disorder were actually quite talented, intelligent, empathic individuals who had much to offer society.

My psychiatrist discussed drug maintenance with mood stabilisers with me at length, although it was not until some 3 years after my second episode that I was given a 6-week psychological therapy which helped me to become more assertive in relationships.

I am sorry to say that the treatment I needed was not on offer. I felt that I needed a therapy that would teach me the skills and encourage me to rebuild my life, my ‘self’ which had been shattered by my experiences. Rather than go through years of expensive private counselling, I took a degree in psychology, determined to improve my understanding, and I worked for MDF The BiPolar Organisation co-ordinating their research into their self-management training programme. I realised that, like me, people with bipolar disorder were much more than their illness and hence needed a more holistic, comprehensive approach to training than simple mood recognition and management. I started to create my own lifestyle development training programme for people with bipolar disorder based on my research. The training offers insight into the condition and a hopeful recovery approach that is attainable, but sadly such holistic therapies are still not available.

My relationship with my psychiatrist has been excellent. I could not have wished for a more supportive, person-centred, empathic individual to encourage me in my understanding and later research of this disorder. He did not specify the exact type of bipolar disorder that I had but was happy to discuss it with me when I asked if it was bipolar I (he confirmed that it was). I did not, however, find the initial rare visits from the CPN and social worker supportive; I thought that they limited me to more cautious objectives that they were able to monitor. After a few visits of this nature, I told them I would telephone them if they were ever needed. Now discharged from secondary services, I am reluctant to rely on primary care which is not, I feel, equipped to deal with mental health issues. My relationship with my GP is limited to e-mailing requests for repeat prescriptions for carbamazepine (200 mg/day).

Since being diagnosed, I consider I have come a long way. I believe that although mood swings will come and go – I have experienced only minor short-lasting bouts which have been successfully self-managed since my last episode over 8 years ago –there is the real possibility of growth. My recent work, as chair of a charity enabling mental health service users to put forward their views in order to shape services, has allowed me to encourage others to hope for a greater recovery and to take a greater part in how they would wish to be treated.

5.2.5. Testimony 5: Patrick

I was told that that I had bipolar disorder about 6 weeks after my life had fallen apart. My marriage had ended abruptly and I believed that I had lost my wife, my two sons and my home for good. My confidence and self-esteem had collapsed, I couldn’t stop crying and I could scarcely perform at work.

Yet the diagnosis was in part a relief. It confirmed the conclusion I had myself reached about 3 months earlier after looking at a Mind leaflet and thinking that the symptoms of bipolar disorder matched my experience exactly. I was 43 years old and realised that I had suffered what I came to recognise as recurrent, severe depression from the age of 7. There was a social and family history to all this: my mother suffered from recurrent depression all her life, my father was discharged from the army having suffered battle shock (from which it took him years to partially get over) and my brother has also been diagnosed with bipolar disorder. My early life was an emotional cauldron, involving several hospital admissions (including a period in isolation) before I was five years old.

I was compulsorily admitted to hospital with mania on two occasions during my late twenties. Those were the peaks of episodes that occurred over 4 years, with depression following each winter/early spring. Those great fluctuations of mood started whilst I was still in the army. I was doing very well in my chosen career, but the sudden onset of mood swings (which I could not have named then) left me bewildered. I would feel alternately omnipotent or worthless, focused and achieving or directionless and riddled with self-doubt. I bought myself out of the army when I felt everyone had given up on me (which I know was not the case). No one suggested I should consult a doctor and it never occurred to me – I had no idea that what I was experiencing was an illness or had a name.

I joined the ambulance service and feel sure that the experiences I had in this emotionally challenging field of work, coupled with the disturbed sleep pattern of the shift worker and the other frustrations of my life (including difficulty forming relationships with women) ate away at my stability. I first saw a psychiatrist during this time. He did not put a name to my condition, though he did prescribe chlorpromazine hydrochloride and offered me inpatient treatment to examine me more closely. Working for the ambulance service, I did not feel I could ‘come out’ in this way and declined the offer. Nor did I connect myself with the occasional manic patient on a section that I helped to transport to psychiatric hospitals.

I experienced full mania for the first time during my first summer as a student after recovery from a deep depression, a lack of sleep and a real sense of social dislocation and lack of direction. I came to believe I was at one with the universe, colours took on a new vividness, I could see the meaning of life in a pond and I argued fiercely and incoherently with anyone who contradicted me. Again no one suggested I should see a doctor and I sought no help. Gradually the condition eased.

At the end of my student days, I was taken to a psychiatric hospital by police. I had taken refuge in a police station because I was convinced the IRA wanted to kill me. Once in a cell I stripped naked and dissolved into incoherence. This was the culmination of several weeks of self-neglect, little sleep, hunger and over-use of alcohol following final exams. On the night I was taken into hospital I was terrified, making connections between everything I saw (in particular wires which I found everywhere), completely disinhibited and exhausted. Looking back, I am grateful that I was admitted as it put a stop to a steep decline in my life that could have ended in a far worse place.

Although my enforced hospitalisation served its purpose, providing safety and stabilising my mood, it was an awful experience. I was completely disoriented at first, received some physical and verbal abuse from one nurse and had no sense of having a defined problem to be treated nor of there being an end in sight. I was just required to fit into an institutionalised regime and submit to someone else’s idea of what was good for me. I was discharged after a month suffering from the side effects of haloperidol without any idea that the shuffling and drooling were side effects. The delusions had gone; the psychiatrist told me that I was not mentally ill, but I was left with physical symptoms that were embarrassing, frightening and incomprehensible. Fortunately my brother was able to intervene on my behalf and the problems eased.

A year later I was back in hospital briefly. This time I thought I was in the 19th century (I was studying history by then at another university). Medication-induced sleep rapidly re-oriented me and I was able to continue my studies. No one, least of all me, connected the episodes. I was moving around from place to place and each occurrence seemed to me to be because of ‘stress’ or self-neglect. At the end of my studies I started a job as a social worker. At my medical I avoided the truth about my condition because no one had given it a name; even after I had the diagnosis I still did not disclose it. But I lived with the fear that people could ‘tell’.

Marrying and having children brought some stability to my life, although I continued to experience periodic lows and quite often pressure of speech and flight of ideas. I frequently flew into rages and resorted to alcohol to dampen down the feeling of going high. However, I am sure regular sleep and hours after years of chaotic student life, shift work and deprivation of sleep in the army, made a difference in keeping mania at bay. But after a period of intense effort and responsibility at work, I was overwhelmed with pressures and life at home was unbearable for everybody. My marriage ended and I consulted my doctor, as I was no longer able to cope at work.

My GP was excellent. She listened, amidst my tears, to my whole story. I immediately felt the sense of someone professionally standing with me and she arranged for an emergency psychiatric consultation. I was given the diagnosis but only after directly asking the registrar who had just told me, without explaining why, that I might have to take lithium for the rest of my life. Within weeks I started the lithium treatment and began to learn about bipolar disorder. MDF The BiPolar Organisation has been, for me, the most important source of learning about the condition and its management, helping me to develop a sense of control over my symptoms. At local meetings I have met people with similar experiences who have become real friends. We benefit from mutual support and contact. Sometimes when people feel ashamed after a manic episode the group provides a non-judgemental place to begin to pick up the pieces. I have benefited personally from a self-management programme run by MDF The BiPolar Organisation, which teaches a variety of proven self-help methods for coping with the condition.

Initially after diagnosis I was discharged from hospital care and felt that I had been cast off with no NHS support. (Without MDF The BiPolar Organisation I would have felt alone, as I had no one else to talk to about living with a major mental health problem.) My GP, however, was very good in getting me re-connected with hospital services. At first, I saw a different doctor every time I went, all of whom saw medication as the only treatment option (one of the drugs reduced me to a zombie-like state), but my psychiatrists have been excellent in recent years.

My GP also helped by obscuring the real reasons for occasional absences from work on certificates, whilst encouraging me to think about ill-health retirement. Eventually, I came under the care of a consultant. I was usually angry when I saw him but gradually I came to appreciate him and to see retirement as a way of escaping an intolerable work situation. My doctors proved to be right and life has improved considerably since leaving full-time work. My consultant continues to be the anchor in the management of my condition and being on my GP’s practice register also gives me a feeling of security.

During a particularly low time I was helped by a CPN using cognitive behavioural techniques. This helped at the time and also during other periods when I had negative thoughts or setbacks. It is now a very long time since I have suffered from full-blown mania. Occasionally, when facing severe stress I have ‘heard’ the odd voice, noticed how certain lights appear unusually bright, or thought that a crow landing near me has significance. So far I have been able to catch myself and dismiss such thoughts.

It is my experience that services have changed for the better over the years and I feel well supported by the NHS and MDF The BiPolar Organisation. I know this is not always the case for others, particularly the undiagnosed sufferers of bipolar disorder who are in the majority. I am concerned that my sons may inherit the disorder, but I hope they will not have to wait 22 years for a diagnosis.

5.2.6. Summary of themes and concerns

Diagnosis

People with bipolar disorder have reported that it has taken them years, sometimes decades to get a formal diagnosis of bipolar disorder and consequently to receive appropriate care (Highet et al., 2004). This problem is one that occurs in both primary care and specialist mental health services (Highet et al., 2004). For some people, getting a diagnosis and treatment can be made more difficult by the stigma associated with mental illness. It took Eileen, now aged 50, more than 20 years to get a diagnosis of bipolar disorder:

I was 42 before I was diagnosed. I first became aware I was suffering severe mood swings as a young child. I can only ever remember being either very happy or very sad. When low I wished I’d never been born. My dad had also always suffered severe mood swings throughout my childhood and spent long spells in hospital, but I was told it was for treatment for a ‘heart attack’. My parents felt such shame about his mental illness they never told me about it, and they never told me their suspicions about my illness. It was only when I broke the news about my diagnosis more than 20 years later that they said they ‘had always known’. I felt quite angry really that they’d never said something earlier. If I had been diagnosed earlier I would have got the right treatment earlier’. (Interview)

Without an accurate diagnosis, people may receive treatment that can be insufficient or harmful. It may be the case that symptoms of depression – for which patients are much more likely to seek treatment – will be recognised, but symptoms of hypomania may be missed or not initially detected by healthcare professionals when taking a patient’s history. After making a suicide attempt at 15, Eileen saw a succession of GPs:

Over the next 27 years, they all treated me for depression, prescribing me more than a dozen different antidepressants. As far as I can tell they did nothing to stabilise my mood swings. None of the GPs ever recognised that my high moods in between the lows were symptomatic of bipolar disorder. It was only when my GP referred me to a CPN after a particularly bad bout of feeling suicidal that the CPN immediately picked up on the highs and said she thought I had bipolar disorder. She referred me onto a consultant psychiatrist who made the diagnosis. He prescribed mood stabilisers and my moods have been a lot more stable ever since. I only wish I’d got the diagnosis 20 years earlier’. (Interview)

The cyclical nature of the illness, whereby symptoms – and consequently the patient’s judgement – changes from day to day, week to week and month to month, makes diagnosis much more difficult. For example, a patient who makes an appointment to see a psychiatrist when depressed and desperate for treatment may feel very different when attending the appointment several weeks later. By then, s/he might have switched into a hypomanic state. Suddenly, the patient is wildly optimistic – life is seen through extremely rose-tinted glasses. The bouts of depression are forgotten and the patient convinces him/herself s/he has made a full recovery. In fact, s/he tells the psychiatrist, s/he wasn’t really all that depressed at all, s/he was just perhaps ‘a bit down in the dumps’. Full of confidence, s/he sounds very convincing to the doctor. Persuaded by the patient’s account of his/her recovery, the psychiatrist fails to probe sufficiently into the patient’s current state of mind to establish whether his/her mood is normal or high. He makes an appointment for 3 months’ time. If the psychiatrist has not seen the patient on a previous occasion, it makes it much more difficult to judge what is his/her normal mood.

But even when a person sees a GP or a psychiatrist while in a depressed phase, the testimonies reveal that professionals might not be able to recognise bipolar disorder. First episodes of bipolar disorder can be very difficult for patients to recognise. Moderate to mild symptoms can be easily misinterpreted as simply being in either a ‘really good’ or a ‘really bad’ mood. People with bipolar disorder can labour under the illusion that they are ‘just moody’ for years. They may struggle to understand what is happening to them, but are likely to try to interpret their moods in the same way that everyone does – simply in terms of life events making them happy or sad –and struggle on.

Often it is only when the highs are sufficiently extreme (for example with symptoms like delusions or extreme pressure of speech) that friends and family can be panicked into seeking medical help and the symptoms become unmistakable to healthcare professionals. The symptoms of depression, which are usually not as obviously noticeable as mania, can more easily pass ignored by those around the sufferer. Too often, it is only when a desperate act like a suicide attempt has been made that those close to someone with bipolar disorder recognise the need for help.

In order to address some of these issues, there needs to be greater public and professional awareness of and understanding about bipolar disorder. Because health-care professionals, in particular GPs, sometimes fail to diagnose the condition, they should be aware that people who have symptoms of depression may have experienced mania. The patient may need encouragement to talk about his/her symptoms, which can be achieved through sensitive questioning (family members and carers may also need to be asked about symptoms and behaviour within the bounds of confidentiality).

Experience of treatment and care

When contact is made with services, healthcare professionals should encourage patients to keep their appointments and ensure that first contact is positive. To promote more effective communication between doctor and patient, doctors should have cultural competence so that they can work effectively within diverse communities.

The testimonies and surveys (Morselli & Elgie, 2003) demonstrate that people with bipolar disorder require healthcare professionals to provide full and clear information about the condition and about the treatment options, ideally in written form (for example, booklets or newsletters) or video (Kupfer et al., 2002). In providing this information, the social, cultural and educational background of the patient (and carer) need to be taken into consideration.

The testimonies and surveys (Morselli & Elgie, 2003) also emphasise the importance of a trusting, open and respectful working relationship between themselves and the professional. What is valued in a professional is someone who will undertake a thorough assessment, listen attentively to the patient’s description of his or her symptoms, and to their carers, and who will clearly explain the treatment options and the risks and benefits. Patients nowadays expect to be treated as an equal partner, no longer the passive recipients of treatment, but as experts in their own condition (Morselli & Elgie, 2003), unlike the individual who felt that ‘my psychiatrist and other professionals tend to decide what is best for me, rather than listening to my thoughts and feelings’ (MDF The BiPolar Organisation survey). This will necessitate that patients are fully involved in decisions about their treatment and care, and that their preferences for a particular treatment, or their decision not to have an intervention, is taken into consideration by the professional when the treatment plan is prepared.

Highet and colleagues (2004) report that patients experience a restricted range of treatment, both in primary and secondary care, mostly limited to medication. MDF The BiPolar Organisation also report that ‘a very high number of people still do not have access to a psychologist’ (MDF The BiPolar Organisation survey, 2004). After a psychotic episode, Linda (aged 34) ‘pushed for some counselling but was made to feel like I was asking for a pot of gold by the hospital psychiatrist’. But counselling ‘helped me come to terms with what I’d been through and also my counsellor suggested I go on some courses (anxiety management, relaxation and problem solving), which were held at the local outpatients centre and were all really helpful’ (extract from testimony). Cynthia says that she benefited from group CBT (run specifically for people with bipolar disorder) and a self-management course because she gained knowledge about her condition, felt less isolated and learned about strategies to help her to cope with both mania and depression:

During my last manic episode I did not, as before, develop psychosis and was able to maintain more control over my treatment and avoid admission to hospital. I was able to put some of what I had learnt from the self-management course into practice. I was also more responsive to professionals and to agreeing to an increase in medication. Once I started to feel better I began to understand what had triggered the high (stress) and how it had built up over several months. I had not had this degree of insight before’ (extract from testimony).

Regarding medication, patients highlight the need for full discussion about dose and side effects. Sally (aged 51), a university lecturer, says that her psychiatrist ‘listens to me and takes my view into account. I told him how my last psychiatrist put me on 20 mg olanzapine and turned me into a zombie. One time I fell asleep while in a lecture I was so tired, and two of my students reported me to my head of department. My new psychiatrist listened to what I told him about my experiences and he put me on just 5 mg which has been fine’ (extract from testimony).

Continuity of care and crisis management

It has been suggested that people with bipolar disorder and depression are more likely than those with disorders such as schizophrenia to receive disorganised and poorly coordinated care (Hickie, 2000).

Highet and colleagues (2004) reported that ‘current crisis management practices were considered to contribute to negative perceptions and stigma’ and they identified a need for ‘prompt and improved access to crisis care during the early phases of acute relapse’. Sally has a crisis team but on one occasion could not access anybody to come out and assess her: ‘the result was that I left home in my car in a manic state and had a fortunately minor accident some hours later, 100 miles away’ (extract from testimony). On another occasion she made four telephone calls to her team but was nevertheless sectioned the next day. She feels that ‘everything should be done to avoid hospital: the staff there are generally not interested and offer virtually no psychological support. The experience is traumatic and one’s stay tends to be prolonged. The crisis team should play a role here in preventing this’ (extract from testimony).

Due to the episodic nature of the condition, however, people with bipolar disorder should be able to access care and treatment when they need it, particularly during a crisis. Cynthia benefited by a supportive CPN with whom she drew up a relapse prevention plan and who ‘worked intensively with me to avoid admission to hospital and offered almost daily support at home’. Similarly Linda agreed an action plan with her psychiatrist should she relapse:

This includes having a supply of medication at home (to start taking when I get ill), having telephone numbers for people I can contact in an emergency and making an appointment with my psychiatrist. He also suggested getting into a regular sleep routine and advised me about the best time of day to exercise’ (extract from testimony).

Self-help and support groups

MDF The BiPolar Organisation reports that it has 142 self-help groups in England and Wales and estimates that on average about 50 or 60 people a year attend each group meeting. Members report that they tend to find out about groups through word-of-mouth or through their own research, rather than through their GP or psychiatrist.

Some patients report that it is only in self-help groups that they can find people who can really empathise. The simple fact of knowing that they are not alone, and that others have the condition, is in itself comforting and helpful. They report that it is very therapeutic to talk to other people who have had similar experiences, for example, psychotic delusions.

The groups are also a very good way of pooling knowledge about drug treatment and local services and form a good support network on which many people rely. Some groups organise speakers and experts to come and talk to members about the condition.

5.3. TESTIMONIES FROM FAMILY MEMBERS/CARERS

5.3.1. Testimony 1: Stuart

My wife’s crisis occurred in 1996 when she began talking about suicide. In retrospect, I believe the trigger for the illness was a sequence of events. Within a relatively short period of time four of our friends were diagnosed with cancer, and within 6–8 months most of them had died. My wife’s father and a number of her closer aunts and uncles all passed away, and then she took on a fairly stressful short-term job that demanded a lot of her time and increasing responsibility. It was during this time that we moved house and her sleep patterns and behaviour began to change. She seemed to become more dependent and needed constant attention. Sleep became non-existent and she was constantly on the go but achieving nothing; as a family we were worn out. At the time we were not really able to understand what was happening and it took us a long time to realise what we were dealing with. The psychiatrist who came to the house to see her made what seemed to me to be a snap diagnosis of hypomania; the only treatment my wife was given at this time was a minimal dose of chloral hydrate (1/4 ml, three times a day). At this time my wife had been running around all day and all night for almost a fortnight. We were all sleep deprived and unable to deal with the situation, but there was no further help.

It was not until we moved to North Wales and my wife actually made an attempt on her life that we got help. May 2000 was a very difficult time; her GP thought initially that she was menopausal and treated her for that. We had told him about her recent behaviour and problems, but she presented fairly well to him and he did not take mental illness into account. My wife then went to one of his satellite surgeries; by that time she was hypomanic so he gave her some mild tranquilisers.

Shortly after this my wife took a number of paracetamol tablets. She was then admitted to the local A&E department where she was transferred to the psychiatric unit. She was in the unit for about a month, during which time I went away for a holiday to get some rest. The week I returned, the hospital discharged my wife and sent her home, even though there was no one in the house; she was sitting in the dark as I walked through the door.

The major problem following the initial admission was that the psychiatrists insisted my wife was well when she was not. The initial diagnoses were anxiety state and depression, then a form of bipolar disorder, and eventually a schizoaffective disorder primarily because of her very odd thoughts such as body displacement. She thought that her head was in the next street, that her limbs were attached to places they shouldn’t be, that she had to move her nerves out of the way before she could sit down and that her mouth did not belong to her. The latter caused all sorts of problems and stops her eating sometimes.

In all it took over 4 years and a number of admissions before a diagnosis of schizoaffective disorder was made. By this time the family was totally exhausted. The effect of all this on the family was to make us all less tolerant of each other and of my wife. It is my experience that healthcare professionals do not think of involving the family in treatment plans or even in communicating basic information: we are usually told to sit outside, to wait and then to go home. I have had to find most of the information about my wife’s illness on the internet. (It is also an excellent research tool to help find out about side effects of medication.) I was not given any information about self-help or support groups.

The lack of any help from the professionals and the inability of social services to do anything, especially when it came to assessing carers, was annoying. It took 3 years after we arrived in North Wales to find Hafal (who are contracted by local authorities throughout Wales to look after carers for the severely mentally ill); it was only then that I had a carer’s assessment. This enabled me to be in touch with others who had similar problems and made me realise that I had to take care of my needs if I was going to stay the course with my wife.

There were continual admissions over the next few years, which meant that the family did not have time to recover properly. The consequence of this is that we have all become unable to cope when my wife is at home. My wife doesn’t talk but shouts and she settles only for short times. If we are out at a restaurant she is liable to do anything on the spur of the moment. If she wants something she will get up and get it not waiting for staff to help her; when she’s finished she gets up and walks out. She has not settled in the residential home where she is recovering either, and the social worker is now looking for a new placement for her. By the time I take her back to the residential home I am exhausted and the rest of the family are wound up.

Relationships between my son and daughter and their mother are strained most of the time. It takes a long time for a family to recover, some never do, and I can understand why divorce is seen as a way out. I sometimes wonder what I feel for her as she is not the woman I married; this illness can devastate a person, depending on the form it takes and the treatment received, especially the speed and consistency of care given.

Although at this point in time my wife has not been in hospital for a year, she has had an increase in medication as she was showing signs of becoming ill again; she is very difficult to manage when she’s like this because she listens to no one and just does her own thing regardless of others. Her current package of medication is olanzapine, valproate and lorazepam, but she doesn’t think they are doing any good. No psychological treatment has been offered at all. I feel that it has been a very long process to get to any real level of wellness.

5.3.2. Testimony 2: Leela

I am a carer of my husband whom I married in June 1968 in an arranged marriage in the South Asian tradition. My husband was in his late thirties when we first met. It would not be wrong to say that I hardly knew him. As I got to know him better I realised that while he was gentle, kind, generous and helpful, he had difficulties in coping with work and was sometimes short-tempered.

My husband visited the UK in 1972 to do his law exams and it was here that we realised that there was something seriously wrong with him. He was insecure, irritable and lonely, his sleep was erratic and he would wander around London aimlessly. When he came home he seemed back to normal. I followed my husband to the UK the following year, but our son died soon after. My husband could not cope with this traumatic turn of events and drifted from one low-level job to another. I began to notice his restless and sleepless nights, his increased drinking and non-stop smoking. He began to live in a world of fantasy, imagining being offered jobs in top-ranking firms and also planning various business ventures beyond his ability. There were long periods of normalcy and we coped, but when there was a crisis he would ‘collapse’. Eventually, one collapse resulted in him resigning from his job.

Our GP prescribed my husband diazepam and some sleeping tablets, but he soon became dependent on these and would throw tantrums when the doctor tried to prescribe fewer tablets. By 1980, his condition was worsening: he was becoming increasingly argumentative and I would hesitate to go anywhere with him. We arranged to see a consultant psychiatrist privately who diagnosed bipolar disorder. I also got a shock to learn from the consultant that my husband had told him that he had had mental health problems since his early teens, a fact that had been concealed from me by him and his family. Looking back, it is amazing that the GP did not consider my husband ill enough to be referred to a specialist.

My husband was referred to our local hospital in 1980 and was treated there till 1994. The consultant at the hospital, who was an authority on bipolar disorder, confirmed the diagnosis and prescribed lithium and chlorpromazine. The chlorpromazine caused problems, including Parkinsonian symptoms such as a tremor. My husband was seen as an outpatient by the consultant only twice, which meant that there was no chance of developing a good relationship with any one of the doctors, who were of varying ability and seniority, or for any doctor to understand his problem fully and monitor his progress (although his lithium levels were checked). Even though my husband was hospitalised on two occasions (the first when he was under observation and the second when his behaviour was becoming unpredictable), the nature of my husband’s condition was not explained to me and the effects of chlorpromazine not made clear. My husband often presented a façade of normalcy but the turmoil was there beneath. I recall his doctor once saying he had to ‘peel off layer by layer’ to understand the problem.

At the age of 65 my husband was transferred to the older adult services at another hospital. He was reluctant to attend until the consultant personally phoned him and he agreed to see him. The consultant seemed very young to us, but the meeting was a positive experience and my husband became co-operative and trusting. This was so different from the experience at the previous hospital. We both felt at ease and confident of being in his care, and almost every time we attended an outpatient appointment, the same consultant saw us.

The entire culture in this hospital was different from that of the first hospital. It felt more home-like and focused on the needs of a particular age group, with every attempt made to meet their needs. Most of the staff were accessible when there was a crisis. For about 5 years my husband was relatively stable, with episodes occurring only a couple of times a year. A CPN was assigned to him who reported back to his consultant weekly. Chlorpromazine was discontinued and other drugs tried and discarded as side effects emerged. Any change was explained to us. My husband is now on lithium, lamotrigine and quetiapine.

My husband was stable until 1998/99, when his behaviour started becoming increasingly unpredictable. In the end he was sectioned after a series of events following his decision to return to his home country, even though he was not fit to travel; this included trying to jump out of a moving car. He was first admitted to a private hospital as there were no NHS beds available. Here I was unable to speak to the doctor for some days and when I did he said my husband was well and ready for discharge. Fortunately my husband’s consultant transferred him back to his own hospital. Here the ward doctor was experienced, accessible and reassuring and worked closely with the consultant. I felt a sense of relief that my husband was in safe hands. On discharge, arrangements were made for attendance at the day hospital, where the standard of patient care was also high.

The months that followed saw him in and out of this ward and followed up in the day hospital. Until recently I could contact the duty doctor in the night or during long weekends in times of crisis and obtain adequate advice. Sadly this has now changed. We are now put through to a nurse manager who usually advises us to take the patient to A&E (which is not appropriate for an agitated patient) or to wait till the end of the holiday break.

During these many years, my husband had long spells of stability when we lived as a normal family. But since 1999 he has been more ill than well. The severity appeared to be less, but the frequency of the episodes increased. With advancing age, I myself began to find it difficult to take care of him. I could not protect him from himself, especially in the nights when he used to walk around the house restlessly, sometimes wandering out of the house, leaving the door open. His incessant smoking and the tremors were a fire hazard and he was also constantly falling down, sometimes unconscious. Taking care of him at home seemed no longer possible and we were compelled to look at the option of a nursing home. It was a traumatic and emotional decision to make but there seemed little alternative. The hospital supported me in finding a suitable nursing home, where my husband has been for the last 6 months. He has had several episodes, but to my relief he is still in the care of his own consultant who visits this nursing home.

Bipolar disorder has stalked our lives for 33 years. During this time, my husband found it impossible to find work at the level he was accustomed to or operate in his own field effectively. This made him really frustrated, which in turn led to episodes of varying levels of intensity. Sometimes I found life impossible and threw myself into my own job which I loved. But I was saddened to see my husband’s confidence crumbling and that he was angry and sad that he was not the breadwinner and resented my success in my own profession. The entire fabric of our marriage was eroding till there was hardly any ‘marriage’ left at all. I was compelled to play down any formal recognition of my work and concealed from friends and relatives the nature of his illness because of the social stigma (I told them that he was a heavier drinker than he really was). I was always, however, frank with his doctors.

I did not recognise that I, as a main carer, needed help, though I often felt helpless and lonely in a new country with few friends or relatives to go to for comfort and advice. It was only when my husband was seriously ill at the second hospital that I noticed medical staff showing concern for my own health, although at the time I wondered why. I was referred to a consultant to whom I was able to relate, and a CPN was assigned to me. I was sent to a psychologist for eight sessions of CBT but the psychologist was still a student who seemed to be going through textbook procedures. I found that short sessions with my doctor, in which I was able to open up to a sympathetic professional, were much more useful, together with the citalopram she prescribed. At the first hospital I felt I was an onlooker and I sometimes even felt a touch of condescension in their manner: Would I understand what all this was about? Did I even understand the English language? But at the second hospital, I found myself being drawn into the process of my husband’s treatment. The consultant would explain to me why he was prescribing the particular medication and the possible side effects. I felt more of an active participant in my husband’s treatment.

This encouraged me to read about bipolar disorder and I joined MDF The BiPolar Organisation. My husband’s consultant also invited me to be a consumer representative on one of his research projects which led to an interest in Consumers in NHS Research (now called INVOLVE). I was also directed to organisations where I could volunteer in my retirement and encouraged to take on positions of responsibility so that I would regain my diminishing confidence.

5.3.3. Summary of themes and concerns

Impact on families and carers

Bipolar disorder can take a terrible toll on those who care for people with the condition and other family members. Most carers are partners, not parents (Hill et al., 1998), and the high rate of divorce among couples in which one spouse has bipolar disorder is a reflection of the emotional damage the illness can have on long-term relationships (MDF The BiPolar Organisation survey, 2004).

Both the highs and lows of the illness can be devastating for families and friends, as can the transition from a depressive phase to a manic phase. Mania, and the uncharacteristic behaviour it results in, can be particularly difficult for loved ones to cope with. Excessive spending, infidelity, offensive, abusive or domineering behaviour and talking incoherently are just a few of the symptoms of mania that can cause distress to carers. It can be particularly upsetting when a person becomes manic for the first time because their behaviour can appear inexplicable to family and friends. What can seem like the relentless patterns of the illness put relationships under strain, especially if the normal course of life (including sleep patterns) is disrupted.

Depression takes a toll in a different way. The patient can seem ‘cut off’ from their family and friends, isolated in their own misery. Their loss of interest and any enthusiasm in life makes it hard to get on with life as normal. Interestingly, partners who responded to a survey conducted in 2004 by MDF The BiPolar Organisation reported that they found the depressive phase of the illness more difficult to cope with than mania. Depressive episodes were felt to be more time-consuming, upsetting and disruptive to family life and caused partners more feelings of guilt and worry (MDF The BiPolar Organisation survey, 2004). Family members and carers may also live with the fear that their relative or friend will attempt suicide. During depressive episodes carers said they felt less able to talk to their partner about how they were being affected by the illness. This difficulty in sharing their worries and concerns with their partners when they were depressed affected their ability to cope with the situation.

Involvement of families and carers in the patients’ care and treatment

Partners, parents and other carers can often feel excluded from the care and treatment of the patient. Highet and colleagues (2004) report that families and carers were ‘ignored or not actively included in management decisions’. The effect of leaving the family out at the early stage of the illness can create a barrier that takes a lot of hard work to break down. A mother of a 28-year-old daughter who killed herself in 2000 said that she was never included in her daughter’s care by her NHS psychiatrist: ‘I only ever managed to speak to my daughter’s psychiatrist in passing and was never invited to attend one of her appointments’ (interview). Her daughter’s suicide followed an episode of severe depression that had lasted 4 months after treatment for mania. Her diagnosis was never properly explained to the family and she was never told that she was at risk of suicide:

Two months before she killed herself, my daughter told me that suicide was not an option for her. I learned later that she spoke to her psychiatrist of suicide every week but she never confided in me. I am totally convinced that if we had been kept informed about our daughter’s mental condition that we could have prevented her from killing herself. It was a terrible lapse in communication between us, our daughter and the medical services. Carers need to be informed what the patient’s condition is and they need to have the condition and the dangers explained to them by psychiatrists’ (interview).

In situations such as this, questions of patient consent and confidentiality need to be considered, but it may be necessary for healthcare professionals to encourage patients, where appropriate, to involve their families and carers in assessments and treatment plans. Young patients may have particular concerns about their parents attending appointments and healthcare professionals should be trained in issues of consent and capacity in this age group.

In a survey (1998) conducted by MDF The BiPolar Organisation, carers said that they would like to have ‘their role in helping to manage the illness recognised by professionals’ (Hill et al., 1998). Indeed families and carers of people with bipolar disorder have a very significant role to play in the management of the patient’s condition because they can help the patient to recognise the onset of symptoms and cope with crises. It is important that this is taken into account by healthcare professionals because information that the carer can provide about symptoms and behaviour might help to reduce hospital admission in the long term. Taking note of carer experience also helps carers to come to terms with their relative’s or friend’s illness, reduces the risk of the carer feeling alienated and also keeps the lines of communication open between professionals and the family.

A survey (1998) conducted by MDF The BiPolar Organisation reported that respondents ranked receiving information and education about the condition amongst the greatest needs of carers and family members. In order for families and carers to fully support the patient, it is essential that as well as the patient they are also given comprehensive and clear information about the course of bipolar disorder and the treatments available (Hill et al., 1998).

Support for families and carers

If patients are to be cared for in the community effectively, then the role of the carers is paramount. This means good access to services and support, especially out of hours. Carers need to be alert to changes in the patient and be able to take practical steps immediately. For this, the carer must be well informed of the nature of the illness, the medication and side effects (see above) and know what to do and whom to contact in case of emergency. It is also important that healthcare professionals are accessible in times of crisis because both patients and carers can be anxious when they seek help and advice. There should be a transparent management plan, which is shared with the patient and carer, and a healthcare professional should be accessible during long weekends and holidays to give advice on the phone.

Due to the episodic nature of the condition, family members and carers require ongoing support, but carers who responded to a survey conducted by MDF The BiPolar Organisation reported they felt their needs were largely overlooked (MDF The BiPolar Organisation survey, 2004). Because of the burden of care, family members and carers can suffer from stress, anxiety and depression (Hill et al., 1998):

Since my wife was diagnosed with bipolar disorder 8 years ago the pressure of caring for her has led to me losing my job and becoming ill myself with reactive depression . . . if appropriate care services had been in place I would probably still be in work’ (MDF The BiPolar Organisation survey, 2004).

It is important therefore that the individual needs of family members and carers are recognised and met accordingly. Healthcare professionals should ensure that if the patient’s condition is chronic or moderate to severe that they offer family members/carers an assessment of their social, occupational and mental health needs. They should also be informed of local self-help and support groups and encouraged to attend, because partners attending local support groups report a number of benefits. They said they felt less negative about the illness, had fewer feelings of worry and guilt, and felt positive about their relationship with the patient. Partners who attend groups also report a greater understanding of bipolar disorder and are more proactive about seeking out this information. They report less disruption of family relationships as a result of their partner’s illness and experience less worry about the future (MDF The BiPolar Organisation survey, 2004). As with patients, carers put a high value on meeting other people who had shared the same experience (Hill et al., 1998).

5.4. RECOMMENDATIONS

5.4.1. People with bipolar disorder

5.4.5.1.

Healthcare professionals should fully involve patients in decisions about their treatment and care, and determine treatment plans in collaboration with the patient, carefully considering the experience and outcome of previous treatment(s) together with patient preference.

5.4.5.2.

Advance statements (directives) covering both mental and physical health-care should be developed collaboratively by people with bipolar disorder and healthcare professionals, especially by people who have severe manic or depressive episodes or who have been treated under the Mental Health Act. These should be documented in care plans, and copies given to the person with bipolar disorder, and to his or her care coordinator and GP.

5.4.2. Families and carers

5.4.2.1.

Healthcare professionals should encourage patients to involve their families and carers in assessment and treatment plans if appropriate and make themselves accessible to family members and carers in times of crisis. The needs of patients’ family members or carers should be taken into account including:

  • the impact of the disorder on relationships
  • the welfare of dependent children, siblings and vulnerable adults
  • the regular assessment of carers’ physical, social and mental health needs.

Footnotes

11

Not recognised in DSM-IV or ICD-10.

Copyright © 2006, The British Psychological Society & The Royal College of Psychiatrists.

All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Enquiries in this regard should be directed to the British Psychological Society.

Cover of Bipolar Disorder
Bipolar Disorder: The Management of Bipolar Disorder in Adults, Children and Adolescents, in Primary and Secondary Care.
NICE Clinical Guidelines, No. 38.
National Collaborating Centre for Mental Health (UK).
Leicester (UK): British Psychological Society; 2006.

NICE (National Institute for Health and Care Excellence)

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