Chapter 5: Co-morbid Service Users' Views on the Provision of Mental Health, Substance Misuse and other Support Services
User involvement and consultation play an essential part in developing high quality substance misuse and mental health service and treatment provisions at national and local levels. It is high on the Government's agenda and commissioners and service providers are now encouraging greater user participation in service developments. This good practice has resulted in an increase in both user representation groups and user involvement posts.
In this part of the project, service users were asked for their views on a number of topics and issues related to the provision of treatment and support for co-morbid mental health and substance misuse problems. A semi-structured interview helped to explore their "lived experience" of their journey through substance misuse and mental health services, covering topics such as relationships with staff, helpful and unhelpful aspects of service contacts and possible areas for improvement. The information collected was able to give a valuable service user perspective, which could lead to informed, evidence-based and effective service provision.
Profile of service user group
Service users were recruited from three different sources including mental health services, substance misuse services and other psychosocial services in both the statutory and the voluntary sector. The profile of those included in the study attempted to reflect the general profile of service users within the seven research locations.
Thirty eight service users, aged from 20 to 57, took part in the study. Thirty were male and eight, female. All were Caucasian and two were non-Scots.
Twelve service users lived on their own, mostly in council accommodation, two lived with their parents, five were in homeless accommodation and five lived with their partner of family. Information about accommodation and living arrangements was unavailable for 14 service users.
Ten service users reported severe [sexual] abuse in childhood or adolescence. Over half spoke of negative childhood experiences and childhood adversity.
Social and familial support
"Loneliness has got a big thing to do with it because if you leave your pub you're no drinking in a pub any more that was where everything was all happening. So that's out."
Participants commented on the importance of family contact and support, the part this played in their lives and the isolation felt when social contact was withdrawn. Although several service users were either estranged from their families or had troubled relations with them, some relied on a particular family member for refuge and support and often the mother was cited as the key supporter in their lives. Still others found the pub was a source of social contact, despite knowing that this was unhelpful in the long run. Some service users spoke of their sense of loss when previous friendships with other substance misusers did not survive a change in life-style.
Service user experiences of service provision and treatment
The experiences of the 38 co-morbid people interviewed for this study were extremely varied and no general conclusions could be drawn. Each individual had sought help from a range of mental health, drug/alcohol and allied services for an array of needs, and their reports of these contacts reflected this disparate approach.
Only one service user described being supported by a specialist co-morbidity service. Co-ordinated service delivery, however, was benefiting several service users, and one service user had accessed a non-specialist service developed for homeless individuals with either or both mental health and substance misuse problems.
The remainder of this chapter examines individual service user experiences and perceptions, grouping them under positive experiences and negative experiences. It reports on the wider implications for one service user's family and summarises comments made about service provision in prison environments.
Table 8 Service users' positive comments
Helpful experiences of services |
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Type of facility | User comments |
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In-patient facility (Tayside) | This offered opportunity to detox with others in similar situation with help and support from specialist staff. It was willing to readmit after relapses. "The 19 day programme took you away from your drink for a while and you got medicated so that you didnae get withdrawal symptoms so that by the time you left you were clear of alcohol and it was just up to you whether you carried on or no. There were groups you could go to efter as well." |
Self-help group environment (Tayside) | The contact with other people in similar situations with similar problems helped to lessen the sense of isolation. |
Specialist project (Edinburgh) | The residential detoxification programme offered was appreciated, particularly the administration of methadone. Staff acted in a straightforward and open manner, allaying the service user's anxieties sufficiently to allow him to feel safe. Ex-user involvement and the knowledge that staff had first-hand experience and knowledge of mental health and substance misuse complications helped this process. Although this project required new service users to undergo a community care assessment prior to admission, this was not seen to be a problem. |
Specialist GP with knowledge of substance misuse and mental health issues (Fife) | "She had faith in me and she trusted me and it was the first time a doctor had ever given me trust and we worked together." |
Acute adult inpatient facility (Borders) | Staff were responsive in finding a bed as and when needed in crisis situations and provided a positive and non-judgemental stance. |
Specialist facility (Borders) | This facility provided a flexible, person-centred and proactive approach that made the service user feel valued and respected. It offered the opportunity to access alternative and complementary therapies and undertake activities with family members. "I would say that (this project) is probably the best thing that's happened to me in a lang time. They listen tae ye. If you've missed an appointment they will phone you up and ask us up. You get a sense that they care mair aboot ye there. Now I'm gang doon there three times a week to get the Reiki and acupuncture." |
Multidisciplinary service providing co-ordinated help for people at risk, specifically addressing both mental health and substance misuse (Glasgow) | This was highly regarded by one service user. He particularly appreciated their persistence and perseverance in trying to engage with him, their proactive stance and the way in which the providers installed a sense of self-worth. Consistently good levels of communication helped different service providers to work well together. "I think the co-morbidity team is the best because they get a hold o' ye and keep pursuing ye until they get ye. Some days I don't come but they're persistent tae get a hold o' ye and they go looking for ye." A second service user also praised this service, which provided him with counselling and a counsellor. The doctor was easy to access, the key worker was supportive and put him at his ease, and the Service team worked collaboratively with him to organise his care plan. Communication between his key worker, counsellor and doctor was good. He felt he was being listened to and could provide active input into his care plan. It included rapid referral and access to a psychologist. When released from prison, he was quickly picked up by the service and rapidly started on treatment. |
Residential rehabilitation service (Glasgow) | One service user spoke of positive experiences of group work with the alcohol and addictions team. He also saw a counsellor twice a week. The service had stuck by him until he was developmentally ready to deal with his personal and substance misuse issues. He appreciated the provided activities programme and found it helpful to mix with others in the same boat as it helped him to feel he was not alone. He also valued practical expertise and guidance and being involved in goal planning. This service also referred him to other groups and services for more help with unmet needs. Other positive comments received concerned the way service users were consulted and engaged in their care planning. A particular bonus was the involvement of ex-substance users in the service who could empathise with service users. An additional benefit was the ability to speak to people and experience some structure to the day. This service was not available at weekends and was missed. "I find the weekends difficult because there's no structure during the weekends. I get the Friday feeling on a Monday because I know that I can be kept busy. I think if you get one person that's really wanting to change that's gonna have an effect on others because you always need that one showing that there can be life without alcohol or drugs. A lot of the workers are ex addicts as well so that helps me personally because it's good to talk to somebody that knows how utterly horrendous and horrific it is to be in the complete grips of alcohol or drugs." |
Project combining expertise of key voluntary sector organisations (Aberdeen) | One service user appreciated the wide range of support and help this service provided. Support included accompanying him to a doctor's surgery and providing transport. It also included practical help with paperwork. He enjoyed the massages provided and no longer begged as the project had provided him with accommodation and helped him obtain a methadone script. It had given him hope for a better life. |
Inter-agency working (Forth Valley) | Services were seen to inter-link well, with good communication between different support groups. One service user had been involved with the development of support groups and had helped to set up an organisation for people to come and discuss their needs and wishes and to benefit from advice and direction by ex-users. Good inter-agency working had helped one service user obtain the help she needed without a long wait. Another appreciated the highly flexible nature of this service and the ability to access a worker as and when needed. She had felt that her input to her own care was valued and had allowed for a degree of self-determination. |
Project to help recovering substance users move toward reintegration with their community (Forth Valley) | The group environment provided by this service was appreciated as a place of trust where people could talk with confidence about any problem or issue without fear of reprisal or rebuttal. The opportunity to talk to both service providers and other service users was also welcomed. The social activities and outings provided had also been enjoyed by many service users. "I enjoy coming here and usually come about three days a week. I've been canoeing, I've been quad biking. I hated going at first but the help's been fantastic." |
Project to support people affected by substance misuse issues mediation (Forth Valley) | This project was viewed by one service user as being particularly good at resolving practical issues and addressing wider needs than simply the diagnosed problems. Staff helped with accommodation issues, clothing and practicalities such as form-filling. The service also welcomed the woman back after relapses, a flexibility greatly appreciated. "They helped me get my flat. They helped me get out the gutter. Being there for me, just talking to me, getting me clothes. I'm dyslexic and any forms I get I come straight here." |
Table 9 Service users' negative comments
Limiting experiences of services |
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Type of facility | User comments |
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General comments - access to services | Long waiting times were a general problem. At one drug problem service facility, a waiting time of up to three years had been reported. Another service user spoke of waiting a year and a half to see a psychiatrist. She received no reminder notification of her appointment and overlooked the date. She subsequently gave up trying to access a psychiatrist. |
General comments - consistency/continuity of care | A service user commented on the lack of consistency and continuity in staff provision which was difficult to cope with. "I got five CPNs in a row. I find it hard enough to trust one person over a long period of time then to be asked to be moved to another person in two weeks, on to another person and then another it's just impossible." Another service user described being passed on to five psychiatrists, allocated two social workers and three community psychiatric nurses. This man indicated that he would have benefited from more consistent care. |
General provisions for mental health/substance misuse | Several service users mentioned the lack of joint working between mental health and substance misuse provisions. Some mental health staff were thought to ignore substance misuse problems. One service user described a classical ping-pong effect, already well documented, where mental health providers feel the substance use problem needs to be addressed and addiction service staff turn people away to have their mental health needs attended to. |
Psychiatric inpatient unit (Tayside) | One service user was still affected by his discharge two weeks before the interview took place. While in hospital, he had been stabilised on methadone, but found the levels were brought down too rapidly and to a sub-therapeutic level. He felt he had had no involvement in his own treatment programme, and the antipsychotic prescribed left him feeling 'dreadful' due to the many side effects. This service user disliked the medicalised approach and strongly indicated that it left him with a sense that his personal issues and emotional difficulties had not been addressed. He also felt a lack of individual attention which resulted in him feeling like 'another number in the system'. He also described the environment as too restrictive with not enough daily activities to keep people occupied. |
Specialist drugs provision, (Fife) | One service user felt that his relapse after six years of abstinence had been caused by the single-minded approach to his previous addiction, which excluded other issues. He felt the care pathway offered following his relapse was a punishment rather than a support and experienced a sense of betrayal, which added to his vulnerability. "I've been aff heroin for 6 years and they were still on at me every time they seen me. Are you back using heroin? And it got to the point where I didnae like going any more and I did try to kill myself. I tried to take an overdose it didnae work and I was honest with them; I told them that I took heroin for the first time in 6 years and it was like I was being punished for telling the truth. Everything changed from that day on. Instead of once a month I had to see them every week." |
Inpatient psychiatric provision (Borders) | Several service users commented on the lack of acute ward beds, especially for detox. One service user described how he had been left to his own devices in a mental health ward and then discharged without a proper assessment or care plan in place. |
In patient psychiatric unit (Edinburgh) | One service user commented on the weighted representation of female acute psychiatric ward staff. This gender issue was not raised by other service users. |
Inpatient acute unit (Glasgow) | The service user interviewed felt that he had been admitted to the wrong ward. He thought he should be in a psychiatric ward due to his hallucinatory experiences following excessive alcohol consumption. He did not feel the environment or the care received was appropriate for his needs and he perceived the staff as intolerant about his drinking. |
Inpatient psychiatric unit (Glasgow) | The same service user spoke of an earlier experience of detoxification in a mental health ward. While he was clear about his alcohol problem, he felt the precursors to his alcohol use needed addressing and saw his psychological needs as paramount. "One time I've been in for an alcohol detox and I only lasted about 48 hours and signed myself out in the middle of the night because I was left sitting on the end of my bed for 48 hours. I didn't feel that any one listened and no one really cared anyway so I basically thought I was a pain to the service and signed myself out. I just don't feel that they've looked into why I started drinking in the first place" |
Inpatient psychiatric unit (Forth Valley) | One service user reported feeling stigmatised and misunderstood during his episode of care. He had been discharged from an acute psychiatric ward for starting a fire. He described being very unwell and confused to the extent that he hadn't realised what he was doing. He was extremely upset at being discharged in such a state and stated that without a close family friend to hand he would not have known what to do or how to get home. |
Special issues
Family provisions
One male service user spoke of the difficulties associated with bringing up children single-handedly, especially as an ex-substance misuser with mental health problems. The last time he relapsed and was hospitalised, his children were removed from him. It took 10 months to get them back following discharge from an acute psychiatric ward. He never received any follow-up care provision. He also felt strongly that ward staff had little time for him and his personal problems.
Prison Services
"If you look for it the help's there but there's no obvious courses to get on. You hear about them from other prisoners rather than in an official way. There are no posters up saying such and such course is available. It seems to be really hard to get on anything in jail"
Three service users reported having had contact with the criminal justice arena. A service user felt positive about his regular contact with probation officers and thought an appropriate maintenance of medication and medical checks was available while in prison.
Other service users reported more negative experiences of prison environments. One service user felt insufficient information and training was provided to help him back into work and thus help him remain crime-free.
Another service user in relation to a non-specified Scottish prison felt service provision provided could be vastly improved with increased information and education about drugs. Having the option of joining a methadone programme was also seen as potentially helpful. This service user also perceived a level of cynicism harboured by mental health professionals working in prisons.
Summary
Positive experiences
Though effective interagency communication and consultation worked well in some instances and was appreciated by the affected service users, most helpful experiences were reported in relation to supported accommodation and the relationships built with individual providers. These included support workers, community psychiatric nurses and occasionally social workers.
Where this occurred, service users appreciated being consulted and engaged in their care planning. When ex-substance [mis]users form part of the service this was viewed positively. The opportunity simply to talk to people generally and experiencing some structure to the day was perceived to be a particular benefit.
The emerging message appeared to be that providers who were equipped with an appropriate knowledge-base, took time, listened, responded equitably and engaged with the service user, elicited more favourable responses and entries to treatment and care.
Perceived gaps in services
Co-morbid service users in many instances experienced received an ad-hoc service response. There was a general lack of awareness concerning available services and routes of access. There were also concerns that the focus was on signs and symptoms rather than looking at needs holistically. The direct involvement of more agency workers with the service user appeared to work well for some but was not necessarily always a better package of care. The lack of dedicated dually trained staff was considered by service users to be hugely problematic.
Service users were particularly critical of mental health services (in particular inpatient facilities) inability to address drugs and alcohol problems alongside presented mental health issues. They related how mental health services did not routinely address drug use. Staff were not interested in it and were therefore not helping service users address the duality of presenting problems.
Related to this complaint, service users also felt excluded from services because of behaviour linked to drinking or drug taking where they actually needed help and support for these behaviours rather than rejection. Some service users were positive about the quality of the help provided by specific individuals within either mental health or substance misuse services.
Other issues of concern related to opening times which did not always coincide with times of need. Service users preferred a more flexible nature of service and the ability to access workers as and when needed.
Conclusion
The picture that emerges from these experiences is one of a group of people who struggle daily with the realities of living with co-morbid mental health and substance misuse problems. Although there are some notable exceptions, they have found existing support services often inappropriate and/or inadequate. The lives of these service users are characterised by a sense of loss: loss of 'normal' or ordinary everyday life, loss of social networks, including loss of friends and family, loss or inability to obtain employment and loss of financial security.
Lessons learned: |
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- The complex needs of this group are highlighted by generations of substance misuse and mental health problems within families, poly-substance misuse, homelessness and unemployment.
- Psychological needs in this group are diverse with common themes of severe and enduring mental illness, sexual abuse, domestic violence and low self worth, all of which require skilful intervention.
- The co-morbid condition is a chronic and relapsing one, and service users value perseverance and continuity with their care.
- There is a need for comprehensive care packages that focus on keeping service users maintained in treatment across several agencies. In mental health services, the Care Programme Approach should be strongly considered and in the substance misuse field Models of Care implemented for the difficult group with co-morbid mental illness.
- The service users' preferred model of care plan development involves collaboration and joint planning.
- The service user group exhibits a high degree of movement between agencies, highlighting the need for fluid communication systems between statutory and non-statutory agencies.
- A variety of services are necessary including detoxification, self help groups, inpatient setting and rehabilitation.
- Rapid access to services is vital.
- Substance misusers often experience the effects of stigmatisation within services.
- Education and training in substance misuse is required for key health professionals i.e. GPs, mental health units and health staff within prisons.
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