Introduction
We report on results from the QuEST (Quality and Effectiveness of Supported Tenancies for people with mental health problems) study, a national programme of research into mental health supported accommodation services in England. Many of those who use these services have a diagnosis of schizophrenia or other psychosis, with associated difficulties in managing everyday activities. Specialist mental health supported accommodation services are a key component of the ‘whole-system care pathway’ for people with complex and longer-term mental health problems, often providing support to people on discharge to the community after lengthy or recurrent hospital admissions. We estimate that around 60,000 people in England live in supported accommodation at considerable cost to the tax payer.1,2 Despite this, there has been little research to guide practitioners and commissioners in the most effective models and the support that should be provided. This research aimed to address this gap by providing evidence on the current provision, quality, cost and effectiveness of supported accommodation for people with mental health problems in England.
Background
The NHS Hospital Plan of 19623 heralded the process of deinstitutionalisation in England and Wales and the development of community-based mental health care, a key component of which is supported accommodation. In England, around one-third of working-age adults with severe mental health problems reside in supported accommodation provided by health and social services, voluntary organisations, housing associations and other independent providers. These include nursing and residential care homes, group homes, hostels, blocks of individual or shared tenancies with staff on site, and independent tenancies with ‘floating’ or outreach support from staff. Local statutory community mental health services provide care co-ordination and clinical expertise to the residents and staff of supported accommodation projects through the Care Programme Approach.4 In 2006, around 12,500 people with mental health problems in England were in a nursing or residential care home1 and around 40,000 were receiving floating outreach.2
The majority of those who require these services have complex mental health needs and functional impairments that have an impact on their ability to manage activities of daily living. Despite medication, many experience ongoing symptoms of their illness and impairments in cognition associated with long-term severe psychosis, reducing their motivation and organisational skills.5 They may require assistance to manage their medication, bills, personal care, shopping, cooking, cleaning and laundry. However, the majority have been shown to be able to sustain community tenure with support and many gain skills and can manage with less support over time.6,7 Nevertheless, most are unemployed and socially isolated.8 In short, despite the move towards community-based care, this group remains one of the most socially excluded in society.9 Supported accommodation services have a very important role in assisting people with complex mental health problems to live in the community, but despite this and the large resources dedicated to these services, there has been very little research to investigate their effectiveness.10
The only survey of mental health supported accommodation to be carried out in England (led by co-investigator SP) found few differences in the characteristics of service users in different types of setting or in the support offered.11 This survey sampled 12 nationally representative regions and identified a total of 481 projects, of which 250 were randomly sampled. Of these, 153 responded to a postal survey; 57 were nursing/residential care homes (with a mean of 16 residents), 61 were individual or shared flats with on-site staff support (with a mean of 13 service users) and 30 provided floating outreach to a mean of 34 service users in their own flats, usually rented from the local authority or a housing association. The majority were male, 80% had a diagnosis of a psychotic disorder and 48% also had a history of substance misuse. There were no differences in service user characteristics between service types. Around 40% of those in supported housing or receiving floating outreach were participating in some form of community activity (compared with 25% of those in residential care) but similar numbers of hours were spent by service users across all settings in education or work (mean 13 hours per week) and only 3% were in open employment. Staff made contact with users an average of 6 days per week in supported housing and 4 days per week in floating outreach services. Between four and six service users (18–25%) moved on from each service annually. Almost all service users were prescribed medication and all services provided support with activities of daily living. The costs of services appeared to be driven by the local tradition of provision rather than clinical need. Shepherd and Macpherson12 have also commented that the development of local supported accommodation provision appears to be largely determined by history, the sociodemographic context of the area and the support available from primary care and secondary mental health services.
Although the previous survey did not find major differences between the content of care provided in supported housing and floating outreach services, many areas of the UK operate supported accommodation pathways where service users move from higher- to lower-staffed settings as their skills improve. This allows for graduated ‘testing’ but necessitates repeated moves. A number of studies have identified discrepancies between stakeholder views on the level of support required, with service users tending to prefer more independent accommodation and staff and family members tending to prefer the person to live in a staffed environment.13–15 An important criticism of more highly staffed settings is the use of institutional regimes and impaired facilitation of service users’ autonomy through over-support and a poor rehabilitative culture.16 Conversely, some service users have reported that independent tenancies are lonely.16,17
At the time that we developed the QuEST programme, there had been no trials investigating the effectiveness of supported accommodation services for people with mental health problems18 and few good-quality studies investigating the effectiveness of these services.10 The paucity of research reflects the logistic difficulties in researching this area. Randomisation to different types of housing support may be resisted by clinicians who feel that service users require a staged process, moving from higher- to lower-supported settings as their skills and confidence increase, and by service users with clear preferences for particular services. It also seems that the availability of supported housing stock is more influential than clinical need in determining accommodation allocation. The lack of evidence means that we do not know whether or not individuals are following the most clinically effective and cost-effective routes to independence. Recently, the results of a major trial in Canada comparing usual care with ‘Housing First’ (a floating outreach model that targets individuals with mental health problems who are homeless) found that Housing First was associated with greater housing stability, but other gains in clinical and social outcomes were less clear.19 The QuEST programme aimed to address this gap in the evidence.
Objectives of the QuEST programme
- To adapt the Quality Indicator for Rehabilitative Care (QuIRC) and an existing patient-reported outcome measure, the Client Assessment of Treatment (CAT) scale, for use in mental health supported accommodation.
- To assess quality and costs of supported accommodation services in England and the proportion of people who successfully move on to more independent settings.
- To identify service and service user factors (including costs) associated with greater quality of life, autonomy, satisfaction with care and move-on.
- To assess the feasibility, required sample size and appropriate outcomes and costs for a randomised evaluation of two models of supported accommodation. One provides a constant level of staff support on-site (supported housing) and the other provides outreach support of flexible intensity to people in independent tenancies (floating outreach).
Figure 1 illustrates the interconnecting work packages (WPs) and timelines.
FIGURE 1 Flow chart showing relationships between WPs. CAT-SA, Client Assessment of Treatment for Supported Accomodation; FO, floating outreach; QuIRC-SA, Quality Indicator for Rehabilitative Care: Supported Accommodation; SH, supported housing; WP, work package. (Figure not reproduced here; see the original article.)
Objective 1 was addressed in the first WP (WP1) of the programme: adaptation of an existing standardised quality assessment tool used in longer-term mental health units, and an existing patient-report outcome measure, for use in mental health supported accommodation settings.
Objectives 2 and 3 were addressed through WP2 and WP3.
WP2 comprised two components:
- survey of a nationally representative sample of supported accommodation services across England that used the standardised tools adapted in WP1, together with additional descriptive data collected from staff and a random sample of service users to describe and compare the content and costs of care delivered in the three main types of supported accommodation service provided in England (residential care, supported housing and floating outreach)
- Longitudinal follow-up of the random sample of service users recruited in WP2i over 30 months to identify service and service user factors associated with our primary outcome – move-on to less supported accommodation.
Work package 3 comprised in-depth qualitative evaluation of staff and service user perspectives on the aspects of care considered most beneficial in supporting recovery and the barriers to providing these.
Objective 4 was addressed in WP4: an evaluation of the feasibility of a randomised trial to compare two existing models of supported accommodation (supported housing and floating outreach).
Study preparation
Recruitment of research team
- Ms Sarah Dowling: Project Manager, University College London – started 18 September 2012.
- Dr Sima Sandhu: Researcher, Queen Mary University of London – started 1 September 2012.
- Dr Rose McGranahan: Researcher, Queen Mary University of London – started 1 January 2016.
- Dr Peter McPherson: Research Associate, University College London – started 4 October 2012.
- Dr Joanna Krotofil: Research Associate, University College London – started 1 January 2013.
- Ms Isobel Harrison: Research Associate, University College London – provided maternity cover for Joanna Krotofil from January to July 2014 and remained involved with the project through North Thames Clinical Research Network funding.
No-cost extension
The National Institute for Health Research kindly agreed a 6-month no-cost extension to our contract to acknowledge the time lag between the official contract start date and the date when the relevant subcontracts were agreed that enabled recruitment of the research team.
Ethics approval
Application for ethics approval for WP1–3 of the programme was made in November 2012 and approval was received on 4 February 2013 from the Harrow Research Ethics Committee (reference 12/LO/2009). Ethics approval for WP4 was sought on 12 March 2015 and approval was received on 7 April 2015 from Liverpool Central Research Ethics Committee (reference 15/NW/0252).
Research governance
The research was conducted in keeping with usual research governance guidance and processes. The chief investigator and researchers prepared appropriate standard operating procedures for all WPs. The researchers were trained in the use of the study materials by Helen Killaspy and piloted these prior to use. In 2014, the research was audited by North London Central Research Consortium and no concerns were identified.
Programme management
The chief investigator and programme manager managed the day-to-day running of the programme, overseen by the Programme Management Group (PMG), which met quarterly to review study progress and address managerial and scientific issues as they arose. The Programme Steering Group (PSG) provided an objective ‘quality assurance’ process, reviewing progress and advising the PMG if problems arose that might have an impact on the successful completion of the research. We also recruited a Service User Reference Group to provide an independent view on aspects of the research that were of particular relevance to users of supported accommodation services. The PMG also consulted with an independent group of clinical and policy experts in the field of supported accommodation at relevant stages of the programme, particularly in relation to the adaptations to the service quality tool in WP1 and recruitment in WP4. In addition, a dissemination event and stakeholder roundtable event were held at the end of the programme, attended by members of this expert group, to discuss the implications of the programme findings for future practice and policy.
Patient and public involvement
We recognised that the involvement of service user expertise was key to the success of the programme and included PPI throughout, from design to dissemination. The co-investigator Gerard Leavey co-ordinated these activities. We consulted with the North London Service User Research Forum (SURF) about the focus and design of the study prior to submitting the proposal for funding and incorporated suggestions into the application (e.g. having an independent service user reference group to consult throughout). We further consulted the SURF in relation to the adaptation of the tools in WP1, the interpretation of the results in WP2, the development of the topic guides in WP3 and WP4 and addressing recruitment issues in WP4.
One of our co-applicants (MA) has lived experienced of severe mental illness and of living in supported accommodation. He has worked closely with our group on previous studies in the field of complex psychosis and contributed to our lay summary at the design/application stage and throughout the programme as a member of the PMG. He was also the service user expert on our PSG. After funding for our programme was agreed, we recruited a second service user expert to join Maurice Arbuthnott on the PMG. Service user representatives in the PMG were actively involved in commenting on the delivery of the research programme, reviewing progress and assisting in the development of plans to disseminate the research findings.
We also recruited three lay members with experience of severe mental health problems and supported accommodation services to our Service User Reference Group. This group was facilitated by Gerard Leavey and met every 6 months to provide an independent view on all aspects of the research that were of particular relevance to users of supported accommodation services.
The PSG meetings were held every 6 months to provide oversight to the research programme, reviewing its progress and advising the PMG if problems arose that might have an impact on its successful completion. The service user representative on this group contributed to these discussions.
All service user experts were paid £50 per meeting plus travel expenses.
Study progress (start date: 1 October 2012)
Work package 1: project months 1–12
Data collection in WP1 was completed on time. However, it was decided that further analysis of the psychometric properties of the adapted QuIRC using the larger sample of service managers and service users recruited in WP2 was indicated. The results were published in April 2016 in BMC Psychiatry.20 Adaptation of the CAT scale was completed on time and the results were published in March 2016 in BMC Psychiatry.21
Work package 2i: project months 13–30
The first component of WP2 (national survey) was completed on time and the main quantitative results comparing the three main types of supported accommodation were published in November 2016 in Lancet Psychiatry.22
Work package 2ii: project months 45–60
The second component (30-month follow-up of service users’ progress) commenced in June 2016 and data collection was completed in August 2017. Researchers tracked service users through 3-monthly contact with their supported accommodation service manager to minimise loss to follow-up. The results were published in The British Journal of Psychiatry.23,24
Work package 3: project months 13–24
Work package 3 was completed on time and the results were published in July 2017 in BMC Health Services Research.25
Work package 4: project months 31–60
Recruitment for WP4 started in April 2015 and data collection was completed in August 2017. The results were published in The British Journal of Psychiatry.23,24