4.2.1. Introduction

The writers of the personal accounts from people with psychosis and coexisting substance misuse were contacted through representatives on the GDG and through various agencies that had access to people with psychosis and coexisting substance misuse. The people who were approached to write the accounts were asked to consider a number of questions when composing their narratives. These included:

• When did you first seek help for your psychosis and coexisting substance misuse and whom did you contact? Please describe this first contact.
• What helped or did not help you gain access to services? Did a friend or family member help you gain access to these services?
• Do you think that any life experiences led to the onset of the problem? If so, please describe these if you feel able to do so.
• In what ways has psychosis and substance misuse affected your everyday life (such as education, employment and making relationships) and the lives of those close to you?
• What possible treatments were discussed with you?
• What treatment(s) did you receive? Please describe any drug treatment and/or psychological therapy.
• Was the treatment(s) helpful? Please describe what worked for you and what didn't work for you.
• How would you describe your relationship with your practitioner(s) (for example, your general practitioner [GP], psychologist or other)?
• Did you use any other approaches to help your psychosis and substance misuse in addition to those provided by NHS services, for example private treatment? If so please describe what was helpful and not helpful.
• Do you have any language support needs, including needing help with reading or speaking English? If so, did this have an impact on your understanding of your diagnosis or on receiving treatment?
• Did you attend a support group and was this helpful? Did family and friends close to you or people in your community help and support you?
• How has the nature of the problem changed over time?
• How do you feel now?
• If your psychosis and coexisting substance misuse has improved, do you use any strategies to help you stay well? If so, please describe these strategies.

Each author signed a consent form allowing the account to be reproduced in this guideline. Two personal accounts from people (both male) with psychosis and coexisting substance misuse were received in total. They offer different perspectives of their experience of illness and treatment, but despite the differences some common themes do emerge. Each person speaks of the isolation he felt at various stages of his illness and treatment and the challenges in finding employment after a long period out of work. In terms of treatment, the service users valued staff who were ‘empathic’, ‘helpful’, ‘motivated’ and ‘keen’, and understood mental health and substance misuse issues. Lack of planned care, gaps in their treatment and treatment being stopped abruptly (especially for the person being released from prison) were deemed unhelpful.

The service users identified a range of helpful and unhelpful treatments. Person A found that in prison CBT, group work, and creative and educative activities were helpful and, out of prison, a local alcohol service provided support better suited to him than Alcoholics Anonymous (AA); self-help (delivered in prison) was considered to be unhelpful because the service user felt it was not properly explained to him. Person B was very positive about the treatment he received from his dual diagnosis practitioner which included writing a drug diary and a feelings notebook, and identifying and managing the risks and triggers.

Both men identified that support from assertive outreach teams and other workers to enable them to re-enter society and find employment (either paid or voluntary) was vital in building self-esteem and restoring confidence.

4.2.2. Personal account A

I was born in 1961 in London, and my parents came from Jamaica. I had a very successful career until 2003. From this time I would go days without sleep, having detailed nightmares, hallucinations and I wouldn't go out in the daytime or answer my phone. As time went on my mood swings got worse and I had no control over them. I thought the world was against me and everyone wanted to do me harm.

I was drinking a lot and socially smoking weed. I lost my job, wife, family and home in 2004 and ended up in prison. In 2005, I was diagnosed with severe depression and personality disorder with agoraphobic, paranoid and psychotic features by a clinical psychiatrist.

In August 2005, I was arrested and remanded in custody. My lawyer had a good understanding of the prison system and talked me though the booking-in process and what was best to say and do. At my booking-in, I advised them of my mental health and all of my issues. I was interviewed the next day and I was told that the services I needed would be provided as soon as possible.

The doctor gave me four sleeping tablets (one per night) to keep me stable until I could see the CMHT. The staff that I met in the first 48 hours showed empathy and concern about my well-being, but the service provided didn't always live up to their promises. The action plan was good, and the full-time staff were helpful, motivated and keen, but the specialist team of a clinical psychologist, psychiatrist and counsellor didn't keep their appointments and this led to me having relapses in my mental health. On a couple of occasions, the staff forgot to open my cell door or were late in doing so and I missed my appointment. To address this problem, I was given stronger medication or larger doses. I never missed taking my medication because if you did you were escorted to the nurse and your mouth was checked after.

I took olanzapine and diazepam daily, and if I was having a bad night I might get temazepam to help me sleep. I was offered lots of meaningful actives to do during the day, such as focus groups, arts and crafts, games and education. This did keep my mind occupied and help me feel better. I was also taught CBT and I started self-help treatment but it didn't entirely work because it wasn't fully explained to me; however it did show me what I could do to help myself and how to handle my relationship with my family and friends, and my problems with drink and drugs.

One of the good things that came out of my prison stay was when we got the governor to change the day centre from being located in a mental health unit to a multicultural mental health day centre. This was my first taste that service user involvement works.

I was released on bail straight from court without any medication and ordered to stay with my family until my court date. My GP was in another town so to get treatment I had to lie and say I still lived there. The paperwork took a while to get to my GP and I was not given any antidepressants, only a referral to the CMHT and sleeping tablets.

On my return to court, the judge gave me probation as long as I followed the guidelines without fail. These included taking my medication and attending anger management, literacy and numeracy classes, in addition to attending all sessions recommended by the CMHT and my probation officer. The CMHT and my probation officer put together an action plan for me without my input. Six specialists were assigned to me. Again, the plan was good, but the services I needed were not available to start at the same time. At first this was not a problem but as time went by my mental health and drinking issues were not dealt with—the services looked at what they could provide and not what I needed. The clinical psychiatrist I saw was very good at her job, knowledgeable and showed lots of empathy and people skills. However, after seven sessions she advised me she was going on honeymoon for 6 weeks and my treatment would be put on hold until her return. Again, as I was making progress, my treatment was put on hold. I had to rely on the CBT I had been taught in prison, and on drink and pills to get though any crisis I may come across.

I had to use drink to get though the hard days; by the time I got help for my drinking it had become a bigger problem. Alcoholics Anonymous did not work for me because it was not holistic and I was always very depressed after AA meetings. I was asked to leave because I wasn't engaging correctly.

My brother paid for me to have four private sessions with a clinical psychiatrist, but he was only willing to help develop my CBT and coping skills. I was referred to Mind for counselling by my GP but failed a risk assessment (my local Mind only had female staff, small interview rooms and no security). At this stage of my recovery journey, I got housed by an organisation for the homeless, and accessed their services. I was given a keyworker, who was very knowledgeable and showed a lot of empathy and a willingness to help me address all my issues and support me to reach my aims and goals. We drew up an action plan together with targets and rewards for hitting them. We met with my GP and had my medication reduced and sorted out some meaningful actives for me to do. I had interviews with the mental health and substance abuse team at the homeless organisation and was put on their self-help programme; the service provided was excellent and empowered me to aim higher and believe I could recover. However, just as I was feeling the benefit and moving on leaps and bounds the service came to an end due to lack of money.

I attended my local alcohol counselling services for my drinking problems; this service suited me better than AA and sorted out my drinking. The counsellor asked me to keep a diary, account for my drinking and look for the triggers that caused it. Then we worked with my keyworker and clinical psychologist to find ways for me to cope.

The service provided by the CMHT came to an end because my probation was up and not because I was ready to rejoin the community or because I had fully recovered. Ultimately I found the service patchy; it was full of great intentions but they failed to deliver what they had promised.

I also attended a programme that helped me to prepare for the moving back into the community. The homeless organisation's resettlement officer helped me sort out my housing benefit, got my gas and electricity turned on, and hired a removal van, a bed and cooker for me. She also gave me advice on paying my bills. The system would not give me a community or crisis loan because I was not on Jobseeker's Allowance or Income Support. I only had the bare minimum in my flat. This did not help my mental health or empower me to keep on going.

Now it was time to look for full-time work. Trying to get employment with a criminal record and mental health issues was near on impossible. I had a lot of interviews but even more excuses why people were not employing me. I was appointed a floating support worker to help me with my move from supported housing back into the community. His caseload is large and the length of time his support will be available to me relies on funding; however, the service provided was good because he works in an holistic way, always returns my calls within 2 hours, keeps all of our appointments, treats me as a person at all times, and provides a professional, honest and reliable service.

All the services helped me in different ways but because they didn't all start at the same time the process was slow and put a lot of pressure on me and my ability to cope. This led to relapse, binge drinking, and withdrawal from the community. I think my recovery journey is going well but I know my hardest tests are still to come.

4.2.3. Personal account B

I am 33 years old and have a history of paranoid schizophrenia and substance misuse.

In 1994 after I finished my A levels I started to hang out with the ‘trendy guys’ who lived in my town and spent many hours smoking cannabis spliffs (rolled tobacco cigarettes laced with cannabis resin) and bongs (water pipes which would cool down the cannabis smoke). In the following autumn, I went to university. I thought that students should spend most of their time getting stoned and living the life of a 1960s' hippie. That was the plan and that's what I did. I not only continued to smoke cannabis but also became experienced with other substances: speed (amphetamine), ecstasy, LSD and magic mushrooms.

Initially, much of my university work was of a high quality. However, as the year progressed and I became more involved with drugs, I began to feel more self-conscious about my existence. I would feel uncomfortable walking to the campus and developed a dread about my course. A feeling of helplessness and a sort of isolation developed and my academic work began to suffer. I changed courses the following year—I didn't feel so anxious but I was smoking one to two ounces of cannabis resin a week and taking a variety of other drugs.

I finished my degree (with a third class) and found an office job. However, I found the job tedious and in 1999 decided to do a master's degree. I continued to use drugs every weekend (ecstasy and cannabis and occasionally cocaine and magic mushrooms). The amount of cannabis I was using led to lung problems.

During the new year celebrations of 2000, I decided to take about ten ecstasy tablets in about 45 minutes. That new year's party may have changed my whole life. During the next term my tutor was concerned that I had very dull eyes. I thought nothing of it. Then as the year went on I started thinking that a DJ was talking to me through the radio and the walls contained mini-microphones and cameras. My body felt more and more intense, and not in a good way. My behaviour became more angry and irrational. I accused people of ridiculous things (for example, I thought that my flatmate had broken into my room and removed a bit of my printer to stop it working). Nevertheless I continued to see my old university friends every weekend and my pattern of drug use continued.

I felt uncertain as to what was happening to me. My feelings became more and more intense. My friends kept telling me that instead of the smiles which I had initially met them with, I looked angry and depressed. My mood deteriorated and I became more isolated. I thought that I should get some help, so I went to the university student services. I got to the front door, felt very self-conscious and walked away.

Despite my continued drug use and deteriorating mental health I completed my master's degree. I found an interesting job but as I walked through the factory and heard Radio 4 talking about me, that was it. How would I be able to do a job well if I thought that a national radio station was talking about me?

I wanted to get treatment but had heard (incorrectly) from a GP that the only way a doctor in the UK would treat me was if I posed a serious risk to myself or others and that would mean putting me on a section of the Mental Health Act.

My parents became worried about my mental health and accessed a neurologist in the United States (which is where we come from). We were concerned that I might have more than just mental health problems and there could be some underlying physiological problem. After seeing the neurologist I was referred on to a psychologist. By the end of it they had identified that I was psychotic and referred me to a psychiatrist who gave me drugs to stop those symptoms.

I returned to England and lived with my parents for about 10 months. My GP referred me to the local psychiatrist and I accessed a community psychiatric nurse, who was very helpful, and a mental health support worker who helped me get out of the house and do things like play badminton and have lunch at the seaside. I was in some form of recovery at this stage but still felt that I was functioning at a much lower level than I was capable of. I would describe my mental state as ‘gormless’. I did not feel very sharp in my thinking. Looking back I'm not sure if this was a reflection of my mental state, the medication I was being prescribed, or a combination of both.

Eventually, I acquired some voluntary work, still feeling gormless, but better able to get things done. This was negotiated through an employment company for disadvantaged people who were able to persuade them that I would be an asset to the team. I was assigned a support worker, which worked out well. I was able to get out of the house and be a part of society at some level, which was better than staying in, watching telly and eating junk food on my own. Indeed, I was even provided with a reference, which helped me get work subsequently.

I decided to move to London and find paid work. I knew a guy who was renting out cheap rooms and I managed to get a job. Initially I was socially isolated but eventually my old friends from my university days contacted me. I was glad to have friends again but we were soon back smoking skunk—about 20 to 30 joints over the weekend. I began to feel gormless again and my behaviour became weird. I could no longer undertake simple tasks at work and this along with other things, such as being slightly smelly, being late to work, spending more time smoking cigarettes than doing the job, led to my dismissal.

Still getting stoned on skunk, I went from one job to the next, each being progressively worse than the former. I just wasn't able to do my job properly. Nevertheless, I continued to smoke weed. Soon, I got to the stage where I would sit at home all day, in my smelly unwashed clothes, eat biscuits for dinner and defer bill payments.

I needed to change my life. My main social contact was a middle-aged artist who would convince me that I should give him money to buy cannabis. Most of my friends had moved away and I did not get on very well with my family. I could not maintain any kind of employment and I had little or no money. I had lost control of my own life and the people who did have control of it were mostly dealers and ‘friends’. I began to get scared just walking down my road. Every year I would watch my life go no further than the previous one. And most of all, I was very vulnerable and truly out of control. I wanted my life back. Desperately.

Throughout this period I saw my psychiatrist every 6 months and I would tell him how smoking weed ruined my chances of having a real life. After 2 or so years, he put me in touch with a dual diagnosis practitioner. For me, it was very important to stop using cannabis. I would probably not have been able do this on my own but by accessing the dual diagnosis service it was much easier.

I met with my dual diagnosis practitioner every 3 weeks. One area of work I did with her was identify the triggers that stimulated me to smoke spliffs. The triggers would range from spending time with the artist or my old friends to watching films alone on television (strong spliffs and funny movies go together like strawberries and cream for me). We identified that the artist posed a real danger to my recovery. Every time I stopped smoking weed I would go and see him and the habit would restart.

We also identified that the addiction to cannabis is strong and psychological, that my brain craves that ‘lovely’ tetrahydrocannabinol (THC – the chemical in cannabis which makes the feeling of using so pleasant) and that it would manipulate me to score by changing my thinking patterns. I would think, ‘the artist has a book that I want back’; that is the THC addiction sending me to the artist to smoke that crafty spliff. A tool to combat this is to ‘know your enemy’.

My dual diagnosis worker helped me to identify and overcome the triggers and armed me with tools to fight the cravings. One tool I use is to picture traffic lights. If I want a joint I look at a picture of a traffic light on my wall. The traffic lights act like a reminder, or a prompt, challenging me to think about whether I really want this and/or how smoking cannabis affected me in the past. Red is the first warning. This alerts me to ask myself: Do I really want to get stoned? Remember your history. Do I want to be that smelly, unkempt, poor drug user again? Remember that it was hard enough coming off the weed and would be just as easy to get back onto the ‘addiction wagon’. Yellow is ‘well why not, life is pretty bad’, like getting sacked from my job and my family disowning me. Yellow is considering the threat that using cannabis would have and the consequences which would come from smoking it. In this case, I may think that there is little else to lose and having a joint wouldn't hurt. This may be the case, but considering my history of cannabis addiction the threat would be significant. And the bottom line would be ‘do I really want to go through that all over again?’ This would refer me back to the red traffic light. Then there is the green light, which is ‘nuclear holocaust’. Everything that could possibly go wrong has and is getting worse. In that case, going out, scoring a draw and getting obliterated might not be so bad. I haven't got to green yet!

For about 9 months, the THC addiction was still strong. I felt that by writing stories and feelings in a notebook, I could manage these very intense feelings, which included blaming everyone except me for the failures of my life (such as ‘I was poor because my brother introduced me to smoking cannabis’). In real life, I could not blame anyone for my substance misuse. Often feelings of social isolation would come out in my notebook. Using cannabis had masked these feelings and would make me less lonely. Harbouring unpleasant thoughts and not being able to express them, especially during rehabilitation, could lead to mental anguish. By writing these thoughts on paper and being able to look back on them, I felt emotionally liberated. I could release the mental tension and feel better. It was like popping a blister.

I also found that smoking tobacco in ‘rollies’ was a great substitute for smoking joints, in terms of the process of preparing the rollies, the act of smoking, and doing something with my hands. Over time I reduced the rollies and, recognising the harms tobacco itself can cause, I now smoke one herbal cigarette a day.

I was spending long periods at home watching television and thinking about how much I would like to smoke a joint and feeling lonely and socially isolated, so my dual diagnosis practitioner and I identified that activity was the best way forward. I looked at every possible opportunity to get involved with as much as possible. I volunteered to do things that interested me. I considered working as a support worker with people with learning disabilities or in the office of my housing association, or befriending an old lady. None of these activities came to much, but just the ‘doing’ helped to stop that lonely feeling which comes with social isolation. I felt that involvement with society would be the best way ahead in terms of recovery from substance misuse. It would also help me to regain my confidence by proving that I can do jobs successfully even though I have a history of mental health issues.

The changes I have made to my drug use and lifestyle have brought about wider benefits too. I have re-established good relationships with my family again and recently spent about a month with them. I am training to be a drugs worker through work I am involved in at a local substance misuse service. I have also taken part in delivering dual diagnosis training and been a service user link worker to an acute psychiatric ward.

I also run a social club, which is proving to be very successful. It provides hot meals to people who may have issues with substance misuse, mental health and/or learning disabilities. We aim to reintegrate people with these issues back into society at their own pace, by providing opportunities such as fun classes, which may inspire them into mainstream education, or making new social networks or joining the management committee. From my own perspective, running this club has enabled me to regain a huge amount of confidence and I am keen to start these clubs more widely. My vision is for each club, under the umbrella of the wider social club organisation, to be run independently – they would choose their own activities and food (within reason). By providing this responsibility, it may help others in their recovery journeys.

My status has improved, as well as my mental health. Since I have accessed the dual diagnosis service my medication dose has dropped by 25%. Two years ago, I was frightened of a 30-minute bus ride to visit my friends but I am not scared on buses any longer or even walking the streets of London at night. I have made new friends and these friendships are blossoming. I have found a new kind of respect for myself and am truly looking forward to a future without limits.

From my point of view, de-stigmatising treatment for mental health is vital to promoting early diagnosis and recovery. An approachable practitioner who empathises and understands mental health and substance misuse issues is also vital. It's important for professionals to plan treatment in conjunction with the service user, taking account of the person's readiness to change. Mental health professionals need to maintain an open mind and sense of optimism about what the service user can achieve, rather than limiting options through low expectations. This can help to develop the person's self-esteem. Reducing or stopping substance misuse altogether may reduce medication doses. When a person is in recovery, social support from the NHS, family members and other social systems, is crucial. When addressing substance misuse, tools such as a drug diary, feelings notebook, and traffic lights, can be useful to enable the person to identify and manage the risks and triggers. Distraction techniques (such as volunteering and fun classes) can help them to start rebuilding their lives and returning to work is important because that is part of the person's identity. Ideally the work should be something that is suited to the person's skills and/or wishes. It's important for the service user to feel a sense of achievement and involving others can help them develop important connections and make new friends.

4.3.1. Introduction

The methods used for obtaining the carers' accounts were the same as outlined in Section 4.2.1, but the questions included:

• In what way do you care for someone with psychosis and substance misuse?
• How long have you been a carer of someone with psychosis and substance misuse?
• In what ways has being a carer affected your everyday life (such as schooling, employment and making relationships) and the lives of those close to you?
• How involved are/were you in the treatment plans of the person with psychosis and substance misuse?
• Were you offered support by the person's practitioners (for example, their GP, psychologist, or other)?
• How would you describe your relationship with the person's practitioner(s)?
• Have you and your family been offered help or received assessment or treatment by a healthcare professional?
• Did you attend a support group and was this helpful?
• Did any people close to you help and support you in your role as a carer?

Three accounts from carers of people with psychosis and coexisting substance misuse were received, which offer different perspectives of being a carer. Two of the carers are parents (one mother, one father) and one is a grandmother. Many of the common themes from the personal accounts in Section 4.2 are echoed in the carers' accounts, including the lack of continuity of care, which may impact on carers as well, who have to fill in the gap. The accounts below reveal the difficulties of caring with someone who has psychosis and coexisting substance misuse, such as challenging behaviour and, in the case of drug misuse, contending with the drugs world, including dealers and other users. All of the families/carers spoke of providing practical support to their family members/friends, which ranged from helping them with their shopping, taking their medication, finding appropriate housing and employment, and managing money and benefits. For carer B a significant financial burden was placed on the family. As all of the accounts below demonstrate, carers value support from healthcare professionals and other workers, and appreciate it when they recognise that they, the carers, have valuable knowledge about their family member's illness and substance problem which can help adherence to treatment and prevent relapse. What is clear from the accounts is that carers have very different individual needs: some may require more support from healthcare professionals than others, who may prefer to cope within their family environment, rather than attending support groups. However during a crisis, all of the carers expressed that they would like to know whom to contact and to be able to access help quickly.

4.3.2. Family/carer account A

It is difficult to know where to begin to summarise what it has meant to see myself as the carer of my son Jack. Did it all begin 20 years ago when, aged 18, he had the first episode that could be deemed to be psychotic? Or was it much earlier when he was having difficulties at school and was labelled dyslexic, although one teacher said that she wondered whether he was a genius?

In some ways we were fortunate in being able to pay for him to see educational psychologists and Jack went through various tests and attended special schools that were supposed to meet his needs and help to prepare him for life in the world outside the safety of his family.

However, as I discovered much later, some of the boys at his specialist day school had access to marijuana and what began as a prank led to him self-medicating because of his worries about not ‘fitting in’ and not being able to keep up at school.

Jack is the youngest of three siblings and his older brother and sister were high achievers at school and university and are both married with children. This has highlighted Jack's feelings of inadequacy and fuelled his anger at what he feels to be an unfriendly world.

In his late teens Jack began experimenting with LSD, which led to his first admission to a private psychiatric hospital. It soon became apparent that we would not be able to afford long-term private treatment and he was transferred to an NHS hospital under the care of the same psychiatrist.

The nightmare began. There were times when he seemed quite mad—he grew his hair and a beard and my beautiful, funny and happy little boy turned into a frightened and frightening stranger. We went through outpatients, then he was sectioned and spent a few weeks in one major teaching hospital. The psychiatrist said to me at the time that there was nothing they could do to stop people bringing in ‘ganja’, so while heavy medication (haloperidol, called the ‘liquid cosh’ by the patients) was being administered the patients were smoking dope on the patios! As I am a psychotherapist and had a lot of support, I battled the system at a time when parents were not told which drugs were being prescribed. This meant that when one's child was sent home, the family had no idea of the possible side effects and what to do about them. We had one terrifying Sunday when Jack went into spasms and his face and jaw locked until we managed to get the antidote pill through a private doctor.

I became involved in what was then the National Schizophrenia Fellowship where there was some support and a bit of information for what were mostly the mothers of children with a similar diagnosis to Jack. By then he was labelled as schizophrenic, although this has now been removed and replaced by ‘possible Asperger's’.

As Jack became more alienated from us, things got worse. He was picked up by the police, once while wandering along the underground railway line and once while climbing on a statue in a park. He broke things in the house, and although he never attacked me or stole money I was often frightened as he crashed about upstairs.

Things came to a head when he was sectioned for the second time and spent 10 weeks in a locked ward. Although dope was still available there his medication was changed and he gradually improved. We were lucky to have an excellent and understanding social worker and for the first time I felt supported by the system to some degree.

The next stroke of luck was that Jack was offered a place on a rehabilitation programme so that when he came out he was monitored by a team under an exceptional psychiatrist who was the first who appeared to see his patients as human beings. Although very overworked, this doctor took the time to consider each patient individually and agreed to gradually reduce Jack's medication. Jack also managed to stop using dope in order to be allowed to come home from his half-way house.

Fast forward about 10 years and Jack has been off neuroleptic drugs but still needs antidepressants and gets very bad headaches. He is not happy—he leads an isolated life and has had a couple of strange, seemingly psychotic episodes, over the last year. We need support, but the services are underfunded and understaffed; only last week Jack kept an appointment with his social worker (a different one sadly to our earlier helper) and no one told him that they had been called out on an emergency. He felt let down and angry that he was just left to wait rather than being told. Three close friends of ours have had sons of a similar age who have committed suicide, and this never leaves my mind especially when I hear Jack feeling let down and undervalued.

I struggle with my sadness, wondering what I could have done differently in Jack's early life. Sometimes it is unbearable. Jack's father and I separated 22 years ago—how much was this a factor?

The family and my relationship with Jack's very patient step-father is affected. The ache in my heart is always there due to living with a son who wishes that he was not alive. I suffer for him and I suffer for myself. I am lucky in many ways in that Jack has a decent small flat and is able to drive his car; he also studies a lot and practises martial arts when he has the energy. But there are days when he stays in bed all day, and he is sometimes angry and unapproachable and leaves a mess in the kitchen and fills our non-smoking household with his cigarette fumes. He has not used ‘recreational’ drugs for many years and hardly drinks alcohol, but he is very self-deprecating and bitter and very much into the occult as a way of escaping the reality of everyday life. This can lead to some dangerous practices.

My experience with the mental health services has been that there is no awareness of the need for continuity—the staff in our centre seem to change almost monthly. The one psychiatrist is overworked and so only crises are dealt with promptly. Most of the social workers are very friendly and well meaning, but don't seem to have much in the way of counselling or psychological training or support for themselves.

We have been offered a consultation for a diagnosis of Asperger's, but nothing has come of this. Basically Jack is not ill enough to get real help or well enough to lead a ‘normal’ life. We continue to do our best to manage in a kind of limbo, but it is not a comfortable place for Jack, or those who love him.

4.3.3. Family/carer account B

I am the carer of my son who is 32 years old and currently has a dual diagnosis. He has been ill for 12 years, originally with the diagnosis of schizoaffective disorder, but over the past few years this has changed to dual diagnosis, though his condition and substance misuse behaviour have been much the same throughout. His main drug is cannabis (skunk), but he has used most of the other commonly available recreational drugs. Initially, and before he was ill, these were mainly ecstasy, amphetamines and alcohol. He still uses these but crack, cocaine and heroin (smoked) have become regulars.

When my son was first ill he was 200 miles away at university. The first indication of problems was a call from a friend with whom he shared student accommodation, who expressed some concern about his behaviour. I then received a call from my son about money problems. When I suggested I visit to help sort things out, my son readily agreed. I found him pleased to see me but quite agitated, and exhibiting some paranoia, but the most disturbing issue was his ‘pressure of speech’. I assumed it was problems with his studies, though he denied it. I then managed to meet with his professor who said he was coping well, the only concern being a lack of actual work being submitted. He suggested I speak to student welfare. They felt that his behaviour suggested mental health problems and suggested talking to the university GP. She referred me to a visiting psychiatric nurse at the end of the week. The intervening few days convinced me that the problems were serious as my son's paranoia and pressured speech became more apparent. I also became aware of the heavy cannabis use of my son and his fellow students, almost at the level of ordinary tobacco use – my presence in the house only inhibited them slightly. The psychiatric nurse became quite alarmed and arranged an immediate meeting with a psychiatrist, who wanted to admit him to hospital but, given the distances involved for me, agreed to my request that we returned home. A consultation with our GP at home resulted in my son being admitted to hospital under a Section 3.

Over the next 4 years my son was in hospital several times, mainly under section. For the rest of that period he lived in the family home. He was then encouraged by the assertive outreach team to move into independent accommodation on the rather spurious grounds that a young man of 24 needed his independence. While he was able to live independently with only limited support, his drug use accelerated due to his lack of ability to control his social circumstances. The flat became the hangout for both his old friends, who were still living at home and therefore had their illegal activities restricted, together with, more unfortunately, members of the drug community (fellow users and suppliers), who in effect made use of him. This situation has persisted since, being relieved slightly by a period in a council hostel and other short periods when he effectively moved back home.

Approximately 7 years ago during another Section 3 enforced period in hospital he was put on depot injections of Clopixol, which has kept his illness under control but means he is quite debilitated for a few days after the fortnightly injections and generally claims that, in part, his drug use (particularly cannabis), is necessary to relieve side effects of the medication.

My life has been affected in several ways. There is the normal disruption suffered by all carers of somebody with a serious mental health condition such as daily visits when he was in hospital, urgent calls at any time of the day or night for support during periods of paranoia or stress, and highly charged, emotionally stressful situations dealing with illogical and delusional arguments and accusations. The drug misuse adds financial and safety concerns. Encounters with drug suppliers have not only been stressful, they were also probably dangerous. In the early days I had to settle drug debts running to several hundred pounds. Currently we have a fairly stable relationship, with small loans usually being repaid the following week from benefits, though arguments still arise when it is obvious that all of the week's benefits have been spent within a few hours and I am expected to fund the whole week; it also stressful to be called in the early hours of the morning for money. I am not sure that my financial support is in my son's best interests – while it ensures he does not go without, it does not encourage him to be independent and I suspect drug suppliers have been happy to advance credit to him because he has me to bail him out when debts get too high.

Initially treatment for my son was only offered for his mental health problems, indeed, his first consultant said that his admitted use of cannabis was not a problem so long as it was not excessive. Times have changed. Various antipsychotic drugs were tried, including clozapine, but none was really very successful until the Clopixol depots. Very little other treatment has been offered. During the second detention in hospital an assessment was carried out by a clinical psychologist and although he felt sessions could be helpful, the consultant insisted that it was too early. I did not feel I was involved in any real sense in forming treatment plans at this time but anyway they amounted to little more than prescribing medication. Just as importantly I was not asked about my views on my son's history and therefore several things were recorded as delusions that were in fact true. Although he was definitely ill, the assumption that most of his stories were untrue still rankles with my son and means he distrusts the medical team.

During the central period of his illness I had a good relationship with his key worker on the assertive outreach team and was invited to CPA [Care Programme Approach] reviews. My son was generally uncooperative at these due to the build up of stress at the situation causing problems, but the outcome was that little was offered apart from continuation of the medication; even variation of the dosage to reduce side effects was never seriously discussed. Since that particular key worker moved on 3 years ago I have had little contact with his care team, and only when initiated by me.

Initially my son's drug misuse was almost ignored. He was encouraged to go to the drug and alcohol service but having eventually got him there, they decided he was not ready for treatment as his mental state was not stabilised. The main reason for this attitude was his lack of interest in stopping his drug use (he still maintains his stance on cannabis though he does accept that other drugs, especially crack, cause him financial problems). Following a change in the structure of the drug and alcohol service and the emergence of dual diagnosis as a label, my son did start regular meetings with a counsellor. Although these went on for several months they appeared to have little effect, floundering again on the belief of my son that cannabis use is not a real problem. At the time of writing his only treatment is medication though he has been relatively stable and open to other possibilities.

My view is that the traditional approach to substance misuse is not really suitable for dual diagnosis sufferers since it relies heavily on the premise that there is a desire to stop using drugs that needs to be supported. My experience with my son and his peers is that they have little interest in stopping their drug use and their mental health problems mean they are not open to the normal logic. This is especially true of cannabis use where there is a strong belief in the general population that use is not a problem anymore than responsible drinking is.

At the start of my son's illness a family counsellor came to our home. She spent most of the time talking to my wife, although she did little to reassure her and offered little in the way of advice on dealing with our son's delusions. His drug use was ignored other than suggesting that we were over-controlling in trying to stop it. I do not remember much about her visits, except that I was unimpressed, especially when she criticised me for putting pressure on my son to take his medication; shortly afterwards he was re-admitted after relapsing because of non-compliance. She completely ignored my daughter, who had great difficulty coming to terms with her ‘big brother's’ problems. My daughter still has reservations about contact with him but these are now largely over fears for her young family and his social situation.

In an attempt to understand more about the illness and the help available we became involved with Rethink (then the National Schizophrenia Fellowship). This was helpful in a social sense but only to a limited extent since nobody else appeared to have drug misuse concerns. From this I became involved with the PCT [primary care trust] advisory group, NIMHE [National Institute for Mental Health in England] and the National Forum for Assertive Outreach. From these I gained more insight into services but, unfortunately, what I learnt primarily was how little there was to offer someone like my son. Most interventions I have seen relate to injectors (for example, needle exchanges, substitution programmes) and are not relevant to cannabis and crack smokers. More structured activities would help as at least part of the problem is boredom and emptiness.

Generally people I was in contact with were sympathetic but were unable to offer much help. As a civil servant my managers were quite helpful in allowing time off for visiting, consultations and meetings. Over time most non-professional support fell away including my wife, who appeared to lose hope as time went on and things did not seem to be improving. Others, such as his neighbours, have had almost no sympathy for my son's situation. The council housing department were particularly lacking in understanding for his condition and how it affected his ability to obey their rules. Housing has been a particular problem and the caring team seemed unprepared to engage with the issue, despite the obvious effects it had on his illness (he reacts particularly badly to stressful situations). However, the police were generally very helpful and understanding in their contact with him, largely as a victim.

4.3.4. Family/carer account C

I have been the main carer of my grandson for nearly 15 years. Jim is now 30 and has a diagnosis of schizophrenia and an alcohol problem. He started living with me when he was 15 after things became increasingly difficult for him while living with his stepfather and mother, who also has mental health problems.

When Jim started living with me he was taking drugs and drinking. At that time I had no idea about the drug use but did know that he was drinking with his friends at weekends. He was unhappy and quite isolated. He got some work with his father (my son), but his behaviour started becoming a bit strange and he would say odd things. We knew there was something wrong and his father paid for him to go to a private hospital; he did not receive a diagnosis at this time.

Not long after that first admission he was admitted to another hospital near to where his mother lived. Around 2000 Jim became increasingly unwell and we had our first contact with our local mental health services. A consultant psychiatrist and nurse came to see him at home. They thought he might have a drug-induced psychosis. They were both good: they listened, provided advice and gave us information. Jim was started on medication for the psychosis but it made little, if any, difference and he got worse. He would be agitated and suspicious and think things had special meanings for him. He was not offered any help for his drug use.

Sometimes he could be very scary and on one occasion he smashed up my house and attacked me. I had to call the police. Jim ended up being taken to hospital under a section of the Mental Health Act. As well as the police, there was an ambulance, doctor, social workers. I hadn't realised that was how it would be.

Jim has had several admissions to hospital, the longest of which was for 18 months. During that admission he spent a long time on the psychiatric intensive care unit as well as time on other wards. The hospital was a terrible place. Most of the staff – doctors and nurses – were awful. They were disrespectful and not interested in the patients. I wrote a letter of complaint about one of the wards but did not get any response. The one exception was the manager of the intensive care unit. He was gentle and calm and would always explain what was going on and the reason for things. Although Jim hated it there he did not want me to complain as he was afraid it would have negative consequences for him. He used to spend most of his time in his room so that he could keep out of the way of the other patients and staff.

When he was in hospital I visited Jim every day – including Christmas day. I took him food and cigarettes. After one of his admissions Jim was placed in a hostel. It was dirty and the staff were awful. It was just dreadful. I couldn't let him stay there.

Despite being tried on lots of different medications Jim didn't really get any better. When he was on the open wards he would abscond, often to go out drinking. I used to go out looking for him, but he would often end up back at my house.

It wasn't until one of his mental health review tribunals that a doctor asked why he had not been tried on clozapine. After that he was started on it and it made a difference straight away. Since being discharged from that admission he hasn't been re-admitted to hospital – that's about 6 years now. Clozapine has been a lifesaver for him.

After his discharge Jim was put under the care of the assertive outreach team. I've got nothing but praise for them. Over the years he has had a number of care co-ordinators and two support, time and recovery (STR) workers. The consultant psychiatrist responsible for his care is the one we met during our first contact with local services. The dual diagnosis nurse specialist has also been involved over quite a few years now. Having continuity, where you can build up a strong relationship with someone, has been really helpful. All the assertive outreach staff have been very good and they're always reliable. I've been given their mobile phone numbers so I can contact them if I need to. They always take any concerns I have seriously and recognise that I know Jim really well and can spot when things aren't right at an early stage. When there have been times when Jim's mental health has deteriorated they have responded quickly and, when necessary, have visited him at home every day. The STR workers have bent over backwards to get Jim out and doing more social things. They'll phone, pick him up and do things like going to the gym, meeting up for coffee or going shopping. They've all been really flexible and helpful. I always attend the CPA meetings and these have been arranged at times that are convenient for me – I still work a few hours each week.

Over the years I've provided Jim with a lot of practical support, like doing his washing, ironing and shopping, making sure he's managing his money and not getting behind with his bills, liaising with his bank and the utility companies, and taking him up to the mental health team to have his blood taken, or to collect his medication. Although he's lived in his own flat for a long time now, he always comes to stay with me overnight once or twice a week – and sometimes has stays for longer periods. When he does that I know he's had a decent meal. I set limits on his drinking. I won't let him drink strong lagers in my house. He knows I don't like him drinking and am worried about the effect it has on him. I'm sure he would make more progress if only he could stop. I phone him every day to remind him to take his medication – even when I'm away on holiday.

I have been offered a carer's assessment and been given information about carers' groups but they're not my sort of thing. I get a lot of support from my partner, who gets on well with Jim, and other family members provide support too.

Over the years Jim has gradually made changes: he can live on his own, manage his money, take his medication (with reminders from me), do some shopping, travel on public transport on his own, and visit his brothers and Mum and stay over with them. He stopped taking drugs a long time ago and has had a few periods when he has stopped drinking but he keeps going back to it. Jim has often talked about courses or getting some voluntary or paid work but hasn't been able to follow through on his ideas yet. His assertive outreach team offered to do things with him but he always declines. Left to his own devices he will often stay in bed all morning. I think he lacks confidence. If only he had a bit more self-belief he could achieve more. I think it's difficult for him because his Dad and brother have been very successful. I think his Dad is a bit embarrassed and disappointed by him and he feels that.

I strongly believe that whatever happens to Jim it is up to me and my family to deal with it. I'll continue to keep supporting him as long as he needs me.

4.4.1. Clinical review protocol (qualitative research)

The review protocol, including the review questions, information about the databases searched and the eligibility criteria used for this section of the guideline can be found in Table 7.

Table 7

Clinical review protocol for the review of qualitative studies.

A systematic search for qualitative studies, observational studies and reviews of qualitative studies of the experience of psychosis and coexisting substance misuse was undertaken. The aim of the review was to explore the experience of care for people with psychosis and coexisting substance misuse and their families, carers or significant others in terms of the broad topics of receiving a diagnosis, accessing services and having treatment. Reviews were sought of qualitative studies that used relevant first-hand experiences of people with psychosis and coexisting substance misuse and their families, carers or significant others.

4.4.2. Studies considered

Based on the advice of the GDG, this review was focused on qualitative research only as it was felt it was most appropriate to answer questions about the experience of care of those with psychosis and coexisting substance misuse. As good-quality qualitative research exists, quantitative and survey studies were excluded.

The search found 21 qualitative studies which met the inclusion criteria (Alvidrez et al., 2004; Bradizza & Stasiewicz, 2003; Carey et al., 1999; Charles & Weaver, 2010; Costain, 2008; Dinos et al., 2004; Hawkins & Abrams, 2007; Healey et al., 2009; Johnson, 2000; Lobban et al., 2010; Loneck & Way, 1997; Padgett et al., 2008a, Padgett et al., 2008b; Penn et al., 2002; Pollack et al.,1998; Strickler et al., 2009; Todd et al., 2002; Turton et al., 2009; Vogel et al., 1998; Wagstaff, 2007; Warfa et al., 2006) and 20 were considered for the review but did not meet the inclusion criteria. The most common reasons for exclusion were because quantitative or survey methodology had been used or because the people included in the research did not have psychosis and coexisting substance misuse. The characteristics of all the studies reviewed in this section, and references to excluded studies can be found in Appendix 13. The references to included studies can be found in the reference list.

Once qualitative studies were assessed for methodological quality, themes from each study were extracted and narratively synthesised. The studies have been categorised under five main headings: (1) experience of psychosis and coexisting substance use and effects of substance use, (2) access and engagement, (3) importance of social networks, (4) experience of treatment, and (5) employment.

4.4.3. Experience of psychosis and coexisting substance misuse and effects of substance use

Eight studies (Alvidrez et al., 2004; Bradizza & Stasiewicz, 2003; Carey et al., 1999; Charles & Weaver, 2010; Costain, 2008; Healey et al., 2009; Lobban et al., 2010; Warfa et al., 2006), four of which were conducted in the UK, looked at the effects of substance use in a population of participants with psychosis and coexisting substance misuse. The main themes that emerged relating to substance misuse included using substances to manage symptoms of psychosis, triggers leading to substance use, and the physical and psychosocial consequences and effects of substance use.

Carey and colleagues (1999) and Alvidrez and colleagues (2004) interviewed participants about positive and negative aspects and consequences of substance misuse and abstaining. Both studies identified interpersonal problems and alienation from social networks (especially substance using social networks) as a negative aspect of abstaining from substance use. One positive aspect of substance use mentioned by the participants was improved social skills and less social inhibition.

While some participants felt that their drug use caused their mental health problems (‘It activates…it triggers the mental illness’), the majority of participants believed that drug use had both beneficial and negative effects on their psychiatric symptoms (Alvidrez et al., 2004). In a more recent study by Charles and Weaver (2010), five out of 14 participants perceived their substance use to directly influence development of their mental health problems, while five others felt that substance use made their psychiatric symptoms worse. Additionally, seven people acknowledged that substance use contributed to relapse and worsened their mental health after the onset of psychosis.

Seven studies found that substances were commonly used by people with psychosis for managing their symptoms. Charles & Weaver (2010) found that participants did not self-medicate, but did use substances to prevent the effects caused by their antipsychotic medication (for example, drowsiness). Bradizza and Stasiewicz (2003) found that experiencing symptoms of psychosis triggered alcohol and drug urges, because such substances helped people to cope with psychotic episodes: ‘that's why I kept using heroin. I mean, my paranoia was bad. I thought everything and everyone was after me’.

For people with schizophrenia, substance use relieved negative symptoms (for example, lack of motivation and energy) but exacerbated psychotic symptoms (for example, paranoia). Participants described the cyclical nature of their mental illness and drug misuse. Psychiatric symptoms trigger substance use, which acts as a catalyst for additional symptoms that precipitate further substance use:

The worst problem in my life right now is this vicious cycle that I've been in for the past seven years, which is battling substance abuse and then how the substance abuse impacts my depression, my self-esteem and the paranoia…

(Alvidrez et al., 2004)

It's like you know something really isn't no good for you, but at the same time, you want the results of an escape from reality temporarily, so you go ahead and do it.

(Alvidrez et al., 2004)

Positive aspects of abstaining consisted of improved living skills, better physical health, getting off the streets and away from crime, regaining trust from others and engaging in social activities. Fears and negative perceptions of abstaining from substance use included anticipating the physical effects of withdrawal, loss of relationships with substance-using friends, and the cycle of relapse.

Despite the perceived positive aspects of substance use, participants had insight and awareness about the dangers of using substances to alleviate symptoms:

[Alcohol] has a tendency to make a person think that his problem is less severe than it might be. It kind of clouds an image of what's really going on and will cause continual problems.

(Alvidrez et al., 2004)

Cannabis was most often mentioned for helping with delusions, controlling symptoms, and ‘normalising behaviour’ (Costain, 2008). Participants in Costain's (2008) study also perceived improvement in cognitive functioning from cannabis, as well as increased levels of energy and reduced psychological distress. Costain points out that this may influence adherence to treatment for service users with schizophrenia, and that clinicians must be aware of the phenomenological expressions and beliefs of service users with schizophrenia. Costain argues that ignoring this issue may have an impact on the development of a therapeutic relationship. Additionally, service users with bipolar disorder would often use substances because they had a desire to feel normal without the sedative effects of their medication, or to attempt to recapture how they felt pre-diagnosis (Healey et al., 2009). Substances used to help people relax were most often alcohol or cannabis (Wagstaff, 2007). Warfa and colleagues (2006) also found cannabis was used by participants to have a ‘good impact’ or feeling of being ‘strong’.

Feelings of anger and loneliness were most often expressed as emotions leading to substance use. In relation to this, participants with bipolar disorder felt that substance use was a way of controlling and managing mood states, particularly mania and depression (Healey et al., 2009), though many realised that this was not a reliable method of controlling mania. Anxiety, depressive symptoms and relieving pressure were also cited as reasons for substance use (Alvidrez et al., 2004; Carey et al., 1999; Healey et al., 2009). Most participants experimented with alcohol and drugs before receiving a diagnosis of psychosis or in the early course of their illness. The substance misuse then became out of control, either because they were unaware of their mental disorder, or did not understand the effects the substances had on their mood. In this experimental phase with substances, dependency is often established.

Additional triggers leading to substance misuse were feelings of being stressed or overwhelmed by life events. These issues could stem from poor housing, unemployment, family relationships and legal problems (Bradizza & Stasiewicz, 2003; Carey et al., 1999). In some instances, previous traumatic life events served as a trigger for substance use (Charles & Weaver, 2010).

4.4.4. Access and engagement

Having a diagnosis of psychosis and coexisting substance misuse can significantly affect a person's ability to access and engage in services and in treatment. This can be due to a myriad of factors including stigma, ethnicity, socioeconomic status, gender, and perception of services. Several themes emerged under the broad heading of ‘access and engagement’ to services for those with psychosis and coexisting substance misuse, including the factors that may act as barriers to accessing treatment services, such as external and internal stigma, ethnicity and gender. This review also identified ‘reasons for seeking help’ as a theme emerging from the included studies. There were seven studies from which themes of access and engagement emerged (Dinos et al., 2004; Johnson, 2000; Loneck & Way, 1997; Padgett et al., 2008b; Penn et al., 2002; Todd et al., 2002; Warfa et al., 2006).

Dinos and colleagues (2004) interviewed service users in community mental health services and day hospitals in London in an attempt to describe the relationship of stigma to mental illness and the consequences of stigma for the individual. One significant theme that emerged for participants with psychosis and coexisting substance misuse was anxiety surrounding managing information regarding both their illnesses, and issues of disclosure (whether to disclose their diagnosis or condition to friends, family and employers). Overt discrimination from others was experienced by most of the participants in this study, typically in the form of verbal or physical harassment, or through actions such as damage to property. Those with a coexisting mental illness and substance misuse reported having been verbally abused and patronised more frequently than those with other diagnoses. People with psychotic disorders experienced physical violence, as well as reduced contact with others. They also felt that they had been discriminated against in that they had not been selected by educational institutions or employers because of their diagnosis. As a result, most participants felt fearful, anxious, angry, and depressed, as well as isolated, guilty and embarrassed. These feelings resulting from stigma were a significant hindrance to recovery and a barrier to seeking help:

It makes you feel bad.. it makes you feel even worse… when people don't trust you and think you're going to do something to someone.

On the other hand, many participants reported positive aspects to having a mental illness, expressing relief that they had a proper diagnosis and appreciating their treatment:

I feel that if I survive it I've been through a very privileged experience and that I can actually make something of it…

Interestingly, no participants who were drug dependent expressed this positive view of their illness. It is evident that for this study population, stigma was a pervasive concern for the majority.

4.4.5. Importance of social networks

There were eight qualitative studies addressing the effect of social networks on people with psychosis and coexisting substance misuse (Bradizza & Stasiewicz, 2003; Carey et al., 1999; Charles & Weaver, 2010; Hawkins & Abrams, 2007; Lobban et al., 2010; Padgett et al., 2008a; Turton et al., 2009; Wagstaff, 2007). All the studies highlighted that individuals often feel isolated from their social networks and do not have many people with whom to socialise. Given the pervasiveness of their illness, many found it difficult to make new friends and often relied on substance-misusing friends for support (Bradizza & Stasiewicz, 2003). Other participants highlighted the need for support and having contact with others who have experienced similar mental health and substance problems (Turton et al., 2009):

most of the counsellors there were ex-addicts themselves and I could relate to them, and the things they said because they've been through it.

Both Hawkins and Abrams (2007) and Padgett and colleagues (2008a) examined the social networks of those with psychosis and coexisting substance misuse who were homeless. Social networks were perceived to be smaller, primarily because many members of their social networks died prematurely (homeless service users with stressful environments were at a higher risk of mortality), or service users withdrew or pushed others away. Many participants had witnessed a death of a loved one; and death appeared prominently in all of the narratives in this study. When social networks diminished, some participants reacted by attempting to rebuild their network, even if this involved negative social interactions with strong substance-use triggers, while others reacted by isolating themselves further to escape social pressures. Many participants adopted ‘loner talk’ and wanted privacy, which arose from negative life experiences or distrust of those around them.

Social benefits were also frequently cited as reasons for substance misuse. Lobban and colleagues (2010) differentiated between internal and external attributions for ongoing drug-taking behaviour. Participants who made internal attributions for substance use described seeking out information and weighing up advantages and disadvantages of taking drugs in order to make their decisions. This was also found in Carey and colleagues' (1999) study, where participants made a ‘decisional balance’ before using substances. Substance use was found to have a positive effect on interpersonal relationships in helping people ‘fit in’ and facilitating connections with others. Furthermore, drug use could reduce social anxiety.

Social networks were seen as a way to experiment with substances in order to gain experience, providing the person with ‘social currency’, which further encourages substance misuse (Charles & Weaver, 2010). A study by Vogel and colleagues (1998) confirms this finding, in that participants felt that using substances elicited feelings of confidence and ‘belonging’, which often promoted more substance use.

Many participants talked about how drug use in their community was the ‘norm’ (Lobban et al., 2010). Participants who attributed their substance use to those around them found that their social networks grew around drug-using communities, and also increased their level of detachment from non-drug using networks. Socialising in drug-using communities reinforced not only shared experiences, but also facilitated the accessibility and consumption of drugs (Charles & Weaver, 2010; Lobban et al., 2010).

Therefore, the social aspect of belonging and acceptance plays a part in both initiating and terminating drug use, and is fundamental in increasing motivation to use substances. When the social networks are associated with drug-using behaviour or triggers, this is a hindrance to promoting and maintaining abstinence. Young people in particular identified that their social networks were very important to them, and much of their substance use was linked to social activities. Thus, they felt that they would require drastic changes to their social networks and surroundings in order to reduce their substance use.

Evidently, social inclusion is important to this population in terms of building relationships (and re-building social capital post-treatment), and influencing substance use.

4.4.6. Experience of treatment

The experience of treatment for people with psychosis and coexisting substance misuse varied widely. Central themes appeared to be ambivalence towards medication, ceasing medication, the importance of self-help and mutual support groups, having a key worker, and cultural sensitivity integrated within services. Eight studies highlighted the experience of treatment for people with psychosis and coexisting substance misuse (Costain, 2008; Johnson, 2000; Loneck & Way, 1997; Pollack et al., 1998; Todd et al., 2002; Vogel et al., 1998; Wagstaff, 2007; Warfa et al., 2006).

4.4.7. Employment

Two studies highlighted the issue of employment for people with psychosis and coexisting substance misuse (Bradizza & Stasiewicz, 2003; Strickler et al., 2009).

The people with psychosis and coexisting substance misuse interviewed by Strickler and colleagues (2009) perceived their diagnoses as a prominent barrier to gaining and maintaining employment; the most frequently cited barriers were the psychiatric symptoms themselves (such as manic episodes, delusions, anxiety and ‘stress’). Both Strickler and colleagues (2009) and Bradizza and Stasiewicz (2003) found that regular employment was difficult to obtain for those with psychosis and coexisting substance misuse. Furthermore, the longer the period of unemployment, the more the difficulty of finding and sustaining employment increased. As a result, there was often an extended period of unemployment with little money available to engage in activities, which could, in turn, encourage substance use. Employment itself was of therapeutic value:

Work was really kind of helpful. I didn't have as many symptoms because I was too busy working.

(Strickler et al., 2009)

It helps my mental illness. It gives me structure.

(Strickler et al., 2009)

Employment helped to reduce substance use and keep participants away from drugs or alcohol. It occupied the service user and kept their daily living skills intact (for example, maintaining daily hygiene at a level suitable to attend work). The regular use of, or dependence on, substances made consistent employment significantly more difficult. Employment, therefore, was of positive structural value to participants, providing them with an additional sense of belonging and contributing to society:

When I am working I feel like I am contributing. I don't feel isolated.

(Strickler et al., 2009)

4.4.8. Summary

The evidence from the narrative synthesis of the qualitative studies provides some important insights into the experience of people with psychosis and coexisting substance misuse and their carers. First, substance misuse appears to stem from a range of environmental and social factors including the management of psychiatric symptoms and/or social situations that encourage and exacerbate substance use. The reasons for substance misuse were cited in nearly every qualitative study included in this review. For the most part, service users highlighted the positive and negative drawbacks to substance use and its direct effect on their psychosis.

Perhaps the most central theme of the reviewed literature was the importance of social networks, both the positive and negative aspects. A positive social support network could influence the ability to seek treatment and maintain positive change, and decrease vulnerability to relapse. On the other hand, negative social networks typically grew around drug-using communities and reinforced substance misuse.

People with psychosis and coexisting substance misuse were often stigmatised by others and faced discrimination. Many also felt internal stigma, which made them hesitant to disclose their diagnosis or ‘edit’ it. Awareness of stigma can often be a hindrance to recovery and a barrier to seeking help in this population. People from minority ethnic groups also felt that the cultural context of their substance use was not taken into account by healthcare professionals. From the carers' perspective, families from ethnic groups and groups of lower socioeconomic status felt disregarded by mental health professionals. As a group, women felt that they faced additional barriers to treatment in the form of social stigma, and the need for childcare while seeking and undergoing treatment. In addition, women felt that they received less support from treatment providers, and would benefit from a more empathic and therapeutic approach. The studies focusing on women emphasise that a person-centred and non-judgemental atmosphere is necessary in order to foster openness and willingness to change. Unsurprisingly all participants highlighted that negative staff attitudes hindered their treatment progress.

An inability to access services easily, combined with negative interactions with healthcare professionals, highlights the importance of an appropriate assessment and referral process, which takes into account both the psychosis and the substance misuse. The literature indicated that a good assessment, which is direct in nature, should be employed for the substance use problem, whereas a non-judgemental, empathetic approach is preferred for assessment of psychosis. Staff however, found this comprehensive assessment problematic due to the increase in resource use and strain on time for healthcare professionals.

Regarding treatment, most participants found medication to be beneficial, but ambivalence about it was common often due to the regimen and side effects. Participants also spoke positively about having a good relationship with a key worker or participating in a self-help group. Employment was seen as providing positive structural value and a sense of belonging.

Family and friends can have an important role to play in supporting a person with psychosis and coexisting substance misuse. They can promote and maintain change, but in order to do this they require information and support from healthcare professionals. The strain on carers, however, can be challenging and they may require a carer's assessment.

From a staff perspective, the qualitative studies suggest that an improvement in staff training is required to facilitate access and engagement in treatment for people with psychosis and coexisting substance misuse. When interventions were successfully delivered, a thorough assessment, as well as coordination between mental health services and substance misuse services, were perceived as crucial.

One interesting result emerging from all the studies was the realisation that it is possible to conduct qualitative research with this specific population and engage them in focus groups and interviews. It is hoped that this finding can facilitate further research in the future for people with psychosis and coexisting substance misuse.

While these qualitative studies provide insight about the experience of care for service users with psychosis and coexisting substance misuse, the overall quality of the evidence was moderate. All studies were assessed for methodological quality according to a qualitative study checklist (NICE, 2009b), however several of the included studies could have been improved by describing methodology and data analysis further. In addition, the theoretical frameworks and approaches were variable across studies, as were the populations on which they focused.

4.5.1. Introduction

The following section includes a qualitative analysis of transcripts available on the internet from people with psychosis and coexisting substance misuse. These were accessed from the following seven websites:

• Bipolarworld (http://www.bipolarworld.net/)
• Dual Recovery Anonymous (DRA) (http://draonline.org/)
• Foundations Associates (http://dualdiagnosis.org/)
• Healthtalkonline (http://www.healthtalkonline.org/)
• Meriden Family Programme (http://www.meridenfamilyprogramme.com/)
• Rethink (http://www.rethink.org/)
• Talktofrank (http://www.healthtalkonline.org/).

The websites all provided information and support to people with psychosis and coexisting substance misuse and included personal narratives from people with these conditions and their families, carers or significant others. The review team undertook their own thematic analysis of the accounts to explore emergent themes that could be used to inform recommendations. It should be noted that service users with diagnoses of bipolar disorder, schizophrenia, schizoaffective disorder and psychotic disorder were all included in these transcripts, in addition to having problematic or dependent substance use.

4.5.2. Method

Using all the personal experiences available from seven websites, the review team analysed the accounts of 48 service users. All accounts were published on the websites in their original form. The majority were written by people from the UK but there were also some from the US. Poems and letters were excluded from the analysis. Each transcript was read and re-read and sections of the text were collected under different headings using a qualitative software programme (NVivo). Initially the text from the transcripts was divided into six broad headings emerging from the data: impact and experience of psychosis and coexisting substance misuse; access and engagement; support and services for people with psychosis and coexisting substance misuse; experience of treatment; experience of recovery; and the perspectives of families, carers or significant others. Under these broad headings, specific emergent themes that were identified separately and coded by two researchers. Three GDG members also individually coded the accounts into emergent themes. Overlapping themes and themes with the highest frequency count across all of the accounts were extracted and regrouped under the subsections below.

There are some limitations to the qualitative analysis for this guideline. Some of the accounts are written in retrospect, whereas others are written about more recent experiences, or in the present, which may have had an impact on the way in which the experiences were recalled. Moreover, the accounts cover different time periods, which may affect factors such as attitudes, and information and services available.

4.5.3. Impact and experience of psychosis and coexisting substance misuse

Given the debilitating impact of having a diagnosis of psychosis or a psychotic-related disorder with coexisting substance misuse, the main themes emerging from the online accounts regarding experience of illness described the symptomatology of the disorder(s), the emotions people felt in receiving an accurate diagnosis, the use of self-medication to control psychiatric symptoms, and, lastly, gaining insight into their mental illnesses.

4.5.4. Access and engagement

Due to the additional burden of having both psychosis and a substance misuse problem, there are many barriers to accessing and/or engaging in treatment. This can stem from experience of stigma, cultural or ethnic factors, lack of coordination between services, and assessing and engaging the person.

4.5.5. Support and services for people with psychosis and coexisting substance misuse

In the online accounts, people with psychosis and coexisting substance misuse frequently highlighted the positive and negative aspects of their support networks, be it personal social networks, peers accessed through mutual support groups, or mental health services. Many participants described how their social networks facilitated or impinged on accessing care or treatment.

4.5.6. Experience of treatment

Due to the nature of treating both psychosis and substance misuse simultaneously, treatment is complex and often managed across multiple services. Many online accounts highlighted experience of medication, the need for specific attributes in a therapist or mental health services, and the beneficial nature of mutual support groups addressing both of their illnesses. They also expressed the opinion that services and treatment were often disconnected.

4.5.7. Experience of recovery

Many online accounts were positive about the future in terms of recovery and learning how to cope with their mental illness as well as maintaining abstinence from substances. The majority of the accounts expressing feelings about their recovery mentioned the tumultuous journey and the need to recognise recovery as a constant yet manageable and rewarding struggle:

Life does get better and it is an enabling disability… a sort of a perceptual thing that never leaves you. But it is actually a gift if you can learn about it and manage it and get the best out of yourself. I mean it's no different from what anybody else is trying to do is get the best out of ourselves aren't we so, you know, it's pretty good.

(Healthtalkonline)

I still take each day as it comes. I'm always prepared for a relapse; even though I have five years ‘under my belt’ of being relatively ‘episode free,’ I'm always on alert.

(Bipolarworld)

I still experience peaks and valleys, but now the cycles aren't so great or frequent, and they are more manageable. I know that experience teaches expertise, help and hope replace helplessness and hopelessness, and weaknesses turn around to become strengths.

(Bipolarworld)

Now, after a few years … some med changes and a lot of work I AM getting better! I can see the light at the end of the tunnel! I know that I have to work every day to deal with my illness and I will always have to be diligent with my meds. But, I also know that I can feel better…

(Bipolarworld)

With thanks to the doctors I have seen since, my condition, though present, is understandable now. I have greatly controlled the symptoms I have experienced. Gone are the days of binge drinking and marital infidelity. I have settled into the life of being a simple person, who gets great pleasure out of all the little things in life, while coping with my disability at the same time.

(Bipolarworld)

4.5.8. Families' and carers' perspective of services

Many families, carers or significant others held strong views on the efficacy of mental health services for people with psychosis and coexisting substance misuse. There were obvious differences between engagement in services in the US versus the UK. Families, carers or significant others perceived that US non-medical services (for example, the police), had a better understanding of mental healthcare than in the UK. Others drew on the lack of communication between services in the UK. Families, carers or significant others perceived mental health professionals as most effective when they spent a significant amount of time with not only the service user, but the family, carer or significant other as well, allowing time for questions to be asked about treatment and medication regimes:

I can go in there and the patient and the parent, and there will be a head nurse or a psychiatrist or somebody there to organise the meeting. And my son can say anything to me and I can give a good, - and I can answer him back. Then a psychiatrist will say, - will tell my son he is wrong or I am wrong or something like that, you know. A friendly, - this thing. And to me, that is very, very helpful, because sometimes - you don't say things in anger, things go better. My son has his view, I have my view, or my son wants something, I will say, ‘I will try my best to do it’. And that is very helpful.

(Healthtalkonline)

Others expressed concern about the discontinuity of care, for example in the transition to adult services:

… [he] was eighteen … and CAMHS [child and adolescent mental health services] needed to get rid of him, but he wasn't having any of it. We had no idea that such a schism existed within the services and had assumed there would be a thread of continuity… [his] CAMHS doctor is a saint. But he is an overworked and under-resourced saint and he hung on to him as long as he could.

(Meriden Family Programme)

The day after their eighteenth birthday they are adults and you are expected to be carers. But carers whose motives are suddenly viewed with suspicion. Carers whose agenda it is automatically opposed to theirs. You are part of the problem. You have to play by confidentiality rules and observe their conventions of procedure.

(Meriden Family Programme)

Some families, carers or significant others felt neglected by services, feeling that they received inadequate information about their family member's or friend's illness:

No-one told us what to expect or how to deal with anything … on a day-to-day basis; the services; medication; relapses; claiming our rightful benefits; Nothing!

(Meriden Family Programme)

Families, carers or significant others emphasised the impact of coping with their family member's or friend's psychosis and substance use problems on their own. Many provided advice on coping and caring for someone with both illnesses:

Mental health needs to be handled with care and support. You have to put yourself into that person's shoes - if you are this person how would your family feel …

(Healthtalkonline)

Learning all you can is a vital part. His mood swings have many times made me want to say I give up … this isn't worth it. After I learned, and still learning each day, all that I can about bipolar disorder I now know and have some idea of what I should expect and how to handle those things.

(Bipolarworld)

Several online accounts highlighted the importance of having the right accommodation for people with psychosis and coexisting substance misuse:

Along with non-compliance with medication regimes and continued substance abuse, inappropriate accommodation would seem to be one of the most common causes of relapse, including remaining too long with parent/carers.

(Meriden Family Programme)

Whilst there are some excellent models of supported accommodation, a huge percentage of options offer very little or no proper support, most especially if there are no family carers in the background. Service users are left vulnerable to a financially motivated system, overseen by under-resourced, underfunded and under-informed social workers, trained to feed them into what has become a multi-billion pound industry, regardless of consequences.

(Meriden Family Programme)

4.5.9. Summary of the qualitative analysis of the online accounts

The online accounts highlight the effect of substance use on psychiatric symptoms, and how many people hide their symptoms from others. Self-medication was frequently cited as a reason to use substances as a way to manage or normalise psychiatric symptoms. The accounts illustrated the cycle of increased symptomatology and escalating substance use.

The theme of social networks also ran through all the online accounts, highlighting that positive support can promote change and optimism in people with psychosis and coexisting substance misuse. This social support could be from a carer, a key worker or advocate, or a self-help group. A number of people commented that the relationship between service user and therapist is of prime importance.

Discontinuity of care and lack of coordination between services was also a prominent theme emerging from the accounts. A few highlighted how police and criminal justice systems could increase awareness about mental health, and promote more coordination and integration between services.

Having a psychiatric diagnosis was often viewed as stigmatising and resulted in the service user concealing problems and symptoms from others. Many people expressed that they felt discriminated against because of their diagnosis.

When accessing services, those from BME groups emphasised that it was difficult for minorities to express their views, and many were reluctant to approach their GP for help. Lack of information from healthcare professionals is a barrier to coming to a full understanding of psychosis and its interaction with substance misuse, the range of treatments available and the role of services.

There were varied views about healthcare professionals emerging from the online accounts, and the main area of criticism concerned contact with the GP and maintaining a therapeutic relationship with a healthcare professional. A number expressed negative views, such as the healthcare professional being uninterested in the service user or not investing enough time in them. Others felt that they had to conceal information from staff, and generally expressed a lack of confidence and trust in their healthcare practitioners. Conversely, positive interactions with healthcare professionals led to greater insight and facilitated readiness to change.

Another overarching theme emerging from the online accounts was a strong opinion about medication for psychiatric illness. There were mixed reports regarding medication; ambivalence and resistance towards medication were frequently cited because of side effects and other factors, and some people abruptly discontinued their medication once they felt better. Self-help groups (such as DRA) were cited as beneficial in promoting change and ongoing support.

The impact of psychosis and coexisting substance misuse on families, carers or significant others was a prolific theme. Some people remarked on the change of roles that occurred as a result of one person having a diagnosis of psychosis and coexisting substance misuse. Many people also commented on the supportive nature of families, carers or significant others.

Lastly, several online accounts explained the process of recovery, and expressed optimism and hope for the future, stemming from ongoing support from their social networks, medication and treatment, and readiness to change.

Limitations

There are some limitations to the qualitative analysis and qualitative review of people's experience of psychosis and coexisting substance misuse in this guideline. First, the illustrative and retrospective nature of the online accounts must be taken into account. Furthermore a large proportion of these accounts were from the US and the treatment modalities or services described may differ or not be accessible in the UK. Second, only certain substances (for example, cannabis and alcohol) were mentioned as substances of misuse in the literature and the online accounts, whereas other substances (such as hallucinogens or heroin) were not mentioned as frequently, or at all. Despite these limitations, a number of themes were identified and ran through both sources of evidence.

Overall, the validity of the qualitative evidence needs to be mentioned, particularly regarding the triangulation of findings from different qualitative methods and its potential limitations. It may be that it is inappropriate to use data gathered from various methods and contexts to inform the experience of care of people with psychosis and coexisting substance misuse. While the qualitative accounts were informative and analysed in a systematic, consensus-based way, the motivation behind the writing of the accounts is unknown and there could be a bias in the information they provide. This needs to be considered when judging the validity of the analysis.

4.8.1. Recommendations