East Asian Arch Psychiatry 2014;24:3-9

ORIGINAL ARTICLE

Prof. Helen Killaspy, MBBS, FRCPsych, PhD, Division of Psychiatry, University College London, London W1W 7UF, United Kingdom.

Address for correspondence: Prof. Helen Killaspy, Division of Psychiatry, University College London, Charles Bell House, 67-73 Riding House Street, London W1W 7UF, United Kingdom.
Tel: (44-207) 679 9710; Email: h.killaspy@ucl.ac.uk

Submitted: 23 April 2014; Accepted: 11 June 2014

pdf Full Paper in PDF

Evolution of Rehabilitation Services in the United Kingdom

Until the last half of the 20th century, most people with mental health problems in the UK received care in large Victorian asylums, usually located on the periphery of major towns and cities. Asylums operated as self-contained institutions and patients, particularly those with longer-term mental health problems had little hope or opportunity for community discharge. “Rehabilitation” mainly comprised work in the laundry, kitchen, gardens, or in industrial therapy units where factory-style production lines operated. Deinstitutionalisation (the process of closing the asylums and developing community-based services) gathered pace from the 1950s onwards, fuelled by the development of phenothiazine medications (the first antipsychotic drugs), an increasing awareness of the negative effects of institutionalisation,^1,2 the ever-increasing asylum population size, and the untenable costs of upkeep of the institutions. These factors gradually led to a shift in socio-political attitudes away from the benevolent Victorian concept of “asylum”, towards the socially inclusive concept of “care in the community”.³

Many rehabilitation practitioners were proactive protagonists of deinstitutionalisation, and contemporary UK mental health rehabilitation services really began to develop in the context of this process. There was an increased focus on helping individuals to gain the skills and confidence to live successfully in the community and in supporting them as they moved from the asylum to community-based residential facilities. The outcomes were generally very positive; 5 years after leaving the asylum, the majority, even those with the most complex problems, had increased social networks, better independent living skills and better quality of life, and few had required readmission to hospital.^4,5

The Development of Community Mental Health Services

As community mental health care further evolved, multidisciplinary community mental health teams (CMHTs) became established, staffed by psychiatrists, nurses, psychologists, occupational therapists, and social workers. As the provision of community mental health and social care became increasingly complex, case managers from these teams were appointed to assist individuals in navigating the system and accessing appropriate treatment and support. In the UK, this is organised through the statutory framework known as the Care Programme Approach.^6,7 In 1999, the National Service Framework for Mental Health⁸ was published, detailing the implementation across England of 3 new types of community mental health services to work alongside CMHTs: early intervention (for people experiencing their first episode of psychosis), crisis resolution and home treatment (providing home-based, short-term care for people in acute mental distress), and assertive outreach (longer-term, intensive case management for people with difficulties engaging with CMHTs who were high users of inpatient care). Service user satisfaction with all these 3 services has been shown to be greater than with standard CMHT care, and early intervention and crisis resolution services have also been shown to be clinically effective and cost-effective.^9,10 However, despite a strong evidence base in the US,¹¹ assertive outreach was not found to be clinically advantageous over standard CMHT care in the UK,^12-14 perhaps due to inadequate implementation of some aspects of the model and because CMHTs already offered some of the key elements.¹⁵

The Need for Rehabilitation Services

Despite the development of these specialist community mental health services, there remains a group of people who do not recover adequately to be discharged home following an acute psychiatric admission. This is the group that is referred to contemporary mental health rehabilitation services in the UK. Most have a diagnosis of schizophrenia or schizoaffective disorder.¹⁶ Delayed recovery is usually due to complexities in the person’s presentation that are related to long-term psychosis, pre-existing or co-morbid problems such as treatment resistance (i.e. non-response to adequate trials of medication); cognitive impairment, especially affecting planning and organisational skills; negative symptoms (apathy, amotivation, blunted affect); co-morbid depression, anxiety, substance misuse, brain injuries; pre-morbid learning disabilities, developmental disorders and personality disorders; and challenging behaviours produced by these problems.^17-21 People referred to contemporary mental health rehabilitation services have usually been unwell for many years and had recurrent admissions to the hospital.¹⁶ This group includes relatively few patients — at any time, only around 1% of people with schizophrenia require inpatient rehabilitation services.¹⁸ However, their needs are so complex that they require lengthy, expensive admissions and high levels of support when discharged into the community. Overall, they absorb around 25% to 50% of the total mental health and social care budget²² and are sometimes referred to as a “low volume, high needs” group.

The specific problems associated with psychosis exacerbate the social exclusion for people with schizophrenia and associated disorders (poor social and functional skills, poor educational attainment and unemployment, poverty, poor housing and homelessness, social isolation, stigma and discrimination, exploitation and victimisation). Since rehabilitation services focus on those individuals with the most complex needs and greatest levels of functional impairment, they work with one of the most socially excluded groups in the society.²³ Nevertheless, positive outcomes have been demonstrated in longer-term studies. For example, Harding et al²⁴ showed that half to two-thirds of people who had received rehabilitation were significantly improved or recovered 32 years later. This suggests that therapeutic optimism is appropriate in the longer term.

Ethos of Contemporary Rehabilitation Services

In 2005, a survey of UK rehabilitation services was undertaken and clinicians were asked their views on what they felt the term “rehabilitation” meant. From their responses a contemporary definition was collated, “A whole systems approach to recovery from mental illness that maximizes an individual’s quality of life and social inclusion by encouraging their skills, promoting independence and autonomy in order to give them hope for the future and leads to successful community living through appropriate support”.²⁵

This definition encompasses therapeutic optimism in terms of holding hope when other services and the service users themselves may feel stuck and demoralised. As other contemporary mental health services have become increasingly focused on shorter-term outcomes, holding therapeutic optimism and a long-term view are key features of the culture of rehabilitation services.

The definition also emphasises the need for a whole care pathway to support service users as they recover. Rehabilitation services operate across the whole spectrum of care, not just in inpatient or community settings, and they tend to work in partnership with other statutory and non- statutory services to support and enable service users over a number of years to maximise their independence. The range of services required includes supported housing, welfare benefits, education and employment, and liaison with primary health care to promote fitness and manage physical health problems.

All mental health services in the UK and many other deinstitutionalised countries around the world are strongly encouraged to adopt a “recovery” orientation.^26-28

Rehabilitation services were early adopters of the recovery approach, which can be summarised in this widely quoted definition, “A deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and roles. It is a way of living a satisfying, hopeful and contributing life even with limitations caused by the illness. Recovery involves the development of a new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.”²⁹

Recovery-oriented services work in collaborative partnership with service users, offering choice about the support and treatments available, and enabling people to share responsibility for the decisions they make. This is a paradigm shift from the “paternalism” of traditional services and, as such, it requires retraining staff to think and act differently and to consider service users as “experts by experience” whose views about what may help them are as valid as the evidence-based options recommended by practitioners.

In the US, Liberman and Kopelowicz³⁰ have suggested a number of “markers of recovery” including working, studying and participating in leisure activities in mainstream settings; good family relationships; living independently; having control over one’s self-care, medication and money; having a rewarding social life; taking part in the local community; voting; and satisfaction with life. Many of these also clearly reflect a more “socially included” life. It, therefore, follows that a recovery-oriented service will also be one that promotes service users’ social inclusion.

This focus on social functioning is of central importance in rehabilitation. Even with optimal medication, complete resolution of “positive” psychotic symptoms is not always possible. However, it is the “negative” symptoms and impairment of cognitive functioning that are often more problematic in terms of a person’s social and everyday functioning, and it is often these that are most difficult to treat. Few medications specifically target “negative” symptoms and the person may have become increasingly deskilled through the course of the illness and recurrent admissions to hospital. As well as having a full understanding of the person’s particular difficulties, a key component of rehabilitation is identification of the person’s strengths that can be built on. This “strengths” approach embodies therapeutic optimism, facilitating the service user to gain confidence through encouragement and positive reinforcement of their existing interests and skills (however insignificant they may, at first, appear).

Interventions and Skills

The specific treatments and interventions offered in inpatient and community rehabilitation services will vary according to each service user’s individual needs, but they follow evidence-based guidance (e.g. those detailed in the NICE [National Institute for Health and Clinical Excellence] guidelines³¹ for the treatment of schizophrenia) and include medications for treatment-resistant psychosis and affective disorders, physical health promotion, psychological interventions such as cognitive behavioural therapy and family interventions, occupational therapy, and supported employment. The rehabilitation team, therefore, has to have an appropriate skill mix to assess the service users’ needs and deliver support and interventions that are tailored to each individual. Incremental steps are required for progress to be made, and according to author’s experience, rehabilitation staff needs to be of a temperament that is low in “expressed emotion”. In other words, the ideal rehabilitation practitioner is a person who is calm, patient, therapeutically optimistic, and encourages people to build on their strengths rather than criticising them for their deficits.

An average inpatient rehabilitation unit in England has 14 beds and is staffed by a multidisciplinary team comprising a full-time rehabilitation psychiatrist, a full-time occupational therapist, a part-time clinical psychologist, and a full complement of nursing and support workers.¹⁶ Increasingly, services employ non-qualified staff to facilitate service users’ access to community activities and around one-third of rehabilitation services employ ex-service users (not necessarily of the same service) as staff members in this kind of role, for example, as support workers or peer supporters.¹⁶ This focus on activities is important since many people with severe negative symptoms of schizophrenia spend many hours a day doing absolutely nothing.³² Occupational therapy is key in motivating service users to engage in activities,³³ and, as service users recover, they are encouraged and supported to expand their repertoire of activities on the unit and in the community, including, ultimately, engagement in education and work. Rehabilitation practitioners, especially occupational therapists, are often key in building bridges with educational establishments and employment agencies to facilitate this. At the same time, support to gradually (re)gain competence in managing activities of daily living (self-care, laundry, cleaning, budgeting, shopping, and cooking) continues as service users move on from inpatient to community settings. Nurses, support workers, and occupational therapists are all involved in facilitating service users with these skills.

The Rehabilitation Care Pathway

In the UK, a range of hospital- and community-based units are provided to support service users in their rehabilitation and recovery, offering more intensive, shorter-term (length of stay < 1 year) and longer-term stays in inpatient and community-based environments. Local services will usually include an inpatient rehabilitation unit able to take people who are detained involuntarily and who may have more challenging behaviours, and a community-based rehabilitation unit that inpatients can move on to that focuses on developing everyday living skills in a domestic environment. Many also provide a longer-term complex care unit (either hospital- or community-based) for those with high levels of disability who have not progressed within a year or so to be able to move to the community rehabilitation unit. Secure rehabilitation units are generally provided at a regional level for those who are detained involuntarily and who have a history of offending as well as complex mental health needs.

As individuals recover, they are able to move on to less supported (more independent) settings. Without local supported accommodation there is nowhere for people to move on to and they can become stuck in hospital or in settings that do not enable them to achieve their optimal level of autonomy.^15,34 In England, around a 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.^35,36 These include 24-hour staffed nursing and residential care homes, individual or shared tenancies with staff on site (up to 24 hours per day), and independent tenancies with “floating” or outreach support from staff. Most staff in supported accommodation services do not have mental health professional qualifications. They provide day-to-day support to service users to assist them in managing their tenancy and activities of daily living and accessing community activities (education, leisure, work). More specialist mental health supervision and interventions are provided by local mental health services such as community rehabilitation teams and CMHTs.

Whilst this pathway has been well described in the UK, its components are likely to vary in other countries where there may be less investment in community-based services or where service users generally return to the care of family members on discharge from the hospital. Nevertheless, delivering the interventions described earlier, holding therapeutic optimism over the longer term, and adopting a recovery orientation are relevant across cultures and settings when supporting people with complex mental health problems to achieve their optimal functioning and maximum independence.

Quality and Effectiveness of Mental Health Rehabilitation Services

In England, the Care Quality Commission is the regulatory body for care provided by the National Health Services, local authorities, private companies, and voluntary organisations. Most countries have similar systems for the registration and review of the quality of health and social care facilities. However, until recently there were no specific tools for assessment of the quality of longer- term mental health rehabilitation units. This gap was addressed through a 3-year study funded by the European Commission involving 10 European countries at different stages of deinstitutionalisation. The product was the Quality Indicator for Rehabilitative Care (QuIRC). This tool is available as an online application (www.quirc. eu) and comprises 145 questions that are completed by the manager of the unit, within about an hour. It assesses 7 domains of care provided: (1) the quality of the built / living environment; (2) the therapeutic environment of the unit; (3) the treatments and interventions available; (4) the degree to which the unit promotes service users’ self- management and autonomy; (5) the degree to which the units promote service users’ contact with family and the community (the social interface); (6) the degree to which the unit protects service users’ human rights; and (7) the degree to which it has adopted recovery-based practice. These domains were identified for inclusion in the toolkit through triangulation of the results from: (i) a review of care standards in each country; (ii) a systematic literature review of the components of care (and their effectiveness) in mental health units³⁷; and (iii) an international Delphi exercise with 4 stakeholder groups (service users, carers, professionals, advocates).³⁸ The final content of the QuIRC was agreed by an international panel of experts in the field. The tool has excellent inter-rater reliability³⁹ and the domain scores, which are derived from the answers provided by the unit manager, have been found to correlate well with service users’ ratings of their experiences of care.⁴⁰ Killaspy et al³⁹ gave fuller details of the item content and the online application (www.quirc.eu) also provides free access to all the publications related to the development of the QuIRC. Once completed, the online QuIRC is able to produce a printable report for each unit that compares their domain scores with the average scores for similar units in the same country. It also details the areas that could be focused on to improve quality in each domain. The QuIRC has been incorporated into the UK’s peer accreditation system for inpatient rehabilitation units (AIMS-Rehab) which is co- ordinated by the Royal College of Psychiatrists’ Centre for Quality Improvement, and similar initiatives are underway in other countries. It will, therefore, be possible in the future to compare the quality of units in different economic and sociopolitical contexts. The QuIRC is currently available in 10 European languages and the data it produces are useful for research, audit, as well as regional, national, and international quality benchmarking.

Contemporary mental health rehabilitation is a complex intervention and, in the UK, there had, until recently, been no studies investigating its effectiveness. One small, retrospective case note review found that around two-thirds of people who were treated in one inner London mental health rehabilitation service were able to progress successfully to supported community living within 5 years and around 10% achieved fully independent living.⁴¹ A larger prospective cohort study carried out in Ireland,⁴² which compared service users in receipt of mental health rehabilitation services with those receiving care from general adult mental health services who had similar levels of complex needs and were waitlisted for rehabilitation services, found that those receiving rehabilitation services were 8 times more likely to achieve and sustain successful community living 18 months later.

It is hoped that further evidence for the effectiveness of mental health rehabilitation services will be produced by two 5-year programmes of research (the Rehabilitation Effectiveness for Activities for Life study and the Quality and Effectiveness of Supported Tenancies study), both funded by the National Institute for Health Research in England. One important early finding is that the quality of care provided in inpatient rehabilitation units (as assessed by the QuIRC) is associated with the promotion of service users’ autonomy.¹⁶ This means that promoting quality in inpatient rehabilitation units has a direct and positive impact on service users’ recovery, which is the main aim of rehabilitation. Later phases of these programmes will allow a better understanding of the specific aspects of rehabilitation which, in turn, will enable service users to achieve successful community living.

Conclusion

Contemporary mental health rehabilitation services in the UK focus on people with complex psychosis, a “low volume, high needs” group which is at risk of social exclusion. Without these specialist services, this group becomes stuck in hospital, but with appropriate rehabilitation and supported accommodation to move on to, the majority of people are able to live successfully in the community. Rehabilitation is a complex intervention which has evolved during the process of deinstitutionalisation in the UK over the last 50 years or so. Further research is needed to identify the specific aspects of the treatment and support it delivers that are most effective in enabling recovery and social inclusion for those with the most complex and long-term mental health needs.

References

1. Goffman E. Asylums: essays on the social situation of mental patients and other inmates. Harmondsworth: Pelican Books; 1968.
2. Wing JK, Brown GW. Institutionalism and schizophrenia: a comparative study of three mental hospitals 1960-1968. Cambridge: Cambridge University Press; 1970.
3. Department of Health and Social Security. Care in the community. London: Her Majesty’s Stationery Office; 1981.
4. Leff J, Trieman N. Long-stay patients discharged from psychiatric hospitals. Social and clinical outcomes after five years in the community. The TAPS Project 46. Br J Psychiatry 2000;176:217-23.
5. Trieman N, Leff J. Long-term outcome of long-stay psychiatric in- patients considered unsuitable to live in the community. TAPS Project 44. Br J Psychiatry 2002;181:428-32.
6. Department of Health. The care programme approach for people with a mental illness referred to as the specialist psychiatric services. London: Her Majesty’s Stationery Office; 1990.
7. Department of Health. Effective care co-ordination in mental health services: modernising the care programme approach. London: Her Majesty’s Stationery Office; 1999a.
8. Department of Health. National service framework for mental health: modern standards and service models. London: London: Her Majesty’s Stationery Office; 1999b.
9. Craig TK, Garety P, Power P, Rahaman N, Colbert S, Fornells- Ambrojo M, et al. The Lambeth Early Onset (LEO) Team: randomised controlled trial of the effectiveness of specialised care for early psychosis. BMJ 2004;329:1067.
10. Johnson S, Nolan F, Pilling S, Sandor A, Hoult J, McKenzie N, et al. Randomised controlled trial of acute mental health care by a crisis resolution team: the north Islington crisis study. BMJ 2005;331:599.
11. Marshall M, Lockwood A. Assertive community treatment for people with severe mental disorders. Cochrane Database Syst Rev 2011;(4):CD001089.
12. Glover G, Arts G, Babu KS. Crisis resolution / home treatment teams and psychiatric admission rates in England. Br J Psychiatry 2006;189:441-5.
13. Killaspy H, Bebbington P, Blizard R, Johnson S, Nolan F, Pilling S, et al. The REACT study: randomised evaluation of assertive community treatment in north London. BMJ 2006;332:815-20.
14. Killaspy H, Kingett S, Bebbington P, Blizard R, Johnson S, Nolan F, et al. Randomised evaluation of assertive community treatment: 3-year outcomes. Br J Psychiatry 2009;195:81-2.
15. Killaspy H, Meier R. A fair deal for mental health includes local rehabilitation services. Psychiatr Bull 2010;34:265-7.
16. Killaspy H, Marston L, Omar RZ, Green N, Harrison I, Lean M, et al. Service quality and clinical outcomes: an example from mental health rehabilitation services in England. Br J Psychiatry 2013;202:28-34.
17. Green MF. What are the functional consequences of neurocognitive deficits in schizophrenia? Am J Psychiatry 1996;153:321-30.
18. Holloway F. The forgotten need for rehabilitation in contemporary mental health services: a position statement from the Executive Committee of the Faculty of Rehabilitation and Social Psychiatry. London: Royal College of Psychiatrists; 2005.
19. Killaspy H, Rambarran D, Bledin K. Mental health needs of clients of rehabilitation services: a survey in one trust. J Ment Health 2008;17:207-18.
20. Meltzer HY. Treatment-resistant schizophrenia — the role of clozapine. Curr Med Res Opin 1997;14:1-20.
21. Wykes T, Dunn G. Cognitive deficit and the prediction of rehabilitation success in a chronic psychiatric group. Psychol Med 1992;22:389-98.
22. Mental Health Strategies. The 2009/10 National Survey of Investment in Mental Health Services. London: Department of Health; 2010.
23. Social Exclusion Unit. Mental health and social exclusion. London: Social Exclusion Unit; 2004.
24. Harding CM, Brooks GW, Ashikaga T, Strauss JS, Breier A. The Vermont longitudinal study of persons with severe mental illness, I: methodology, study sample, and overall status 32 years later. Am J Psychiatry 1987;144:718-26.
25. Killaspy H, Harden C, Holloway F, King M. What do mental health rehabilitation services do and what are they for? A national survey in England. J Ment Health 2005;14:157-65.
26. Sainsbury Centre for Mental Health. Implementing recovery: a new framework for organisational change. London: Sainsbury Centre for Mental Health; 2009.
27. Shepherd G, Boardman J, Slade M. Making recovery a reality. London: Sainsbury Centre for Mental Health; 2008.
28. Shepherd G, Boardman J, Burns M. Implementing recovery: a methodology for organisational change. London: Sainsbury Centre for Mental Health; 2010.
29. Anthony WA. Recovery from mental illness: the guiding vision of the mental health service system in the 1990s. Psychosoc Rehabil J 1993;16:11-23.
30. Liberman RP, Kopelowicz A. Recovery from schizophrenia: a challenge for the 21st century. Int Rev Psychiatry 2002;14:245-55.
31. National Institute for Health and Clinical Excellence. Core interventions in the treatment and management of schizophrenia in adults in primary and secondary care (update edition). Available from: http://publications.nice.org.uk/schizophrenia-core-interventions-in-the-treatment-and-management-of-schizophrenia-in-adults-in-cg82 . Accessed 20 Apr 2014.
32. Curson DA, Pantelis C, Ward J, Barnes TR. Institutionalism and schizophrenia 30 years on. Clinical poverty and the social environment in three British mental hospitals in 1960 compared with a fourth in 1990. Br J Psychiatry 1992;160:230-41.
33. Cook S, Birrell M. Defining an occupational therapy intervention for people with psychosis. Br J Occup Ther 2007;70:96-106.
34. MacPherson R, Shepherd G, Edwards T. Supported accommodation for people with severe mental illness: a review. Adv Psychiatr Treat 2004;10:180-8.
35. National Statistics. Community Care Statistics 2006, Supported Residents (Adults), England. England, The Information Centre, Part of the Government Statistical Service; 2006.
36. Research into the effectiveness of floating support services for the supporting people program: final report. UK: Department for Communities and Local Government; 2006.
37. Taylor TL, Killaspy H, Wright C, Turton P, White S, Kallert TW, et al. A systematic review of the international published literature relating to quality of institutional care for people with longer term mental health problems. BMC Psychiatry 2009;9:55.
38. Turton P, Wright C, White S, Killaspy H; DEMoBinc Group. Promoting recovery in long-term institutional mental health care: an international Delphi study. Psychiatr Serv 2010;61:293-9.
39. Killaspy H, White S, Wright C, Taylor TL, Turton P, Schützwohl M, et al. The development of the Quality Indicator for Rehabilitative Care (QuIRC): a measure of best practice for facilities for people with longer term mental health problems. BMC Psychiatry 2011;11:35.
40. Killaspy H, White S, Wright C, Taylor TL, Turton P, Kallert T, et al. Quality of longer term mental health facilities in Europe: validation of the quality indicator for rehabilitative care against service users’ views. PLoS One 2012;7:e38070.
41. Killaspy H, Zis P. Predictors of outcomes for users of mental health rehabilitation services: a 5-year retrospective cohort study in inner London, UK. Soc Psychiatry Psychiatr Epidemiol 2013;48:1005-12.
42. Lavelle E, Ijaz A, Killaspy H, Holloway F, King M, Keogh F, et al. Mental health rehabilitation and recovery services in Ireland: a multicentre study of current service provision, characteristics of service users and outcomes for those with and without access to these services. Final Report for the Mental Health Commission of Ireland; 2011.