DEINSTITUTIONALIZATION: LEARNING FROM SUCCESS

From the early 1970s until the late 1990s Dr. David Abrahamson, a consultant psychiatrist at Goodmayes hospital led a psychiatric rehabilitation team that successfully transitioned long stay patients into shared housing in the community. With the catastrophic failings of deinstitutionalization in the United States and Canada there is much to learn from the carefully planned approach taken by the Goodmayes team. In 2002 he was awarded the MBE for services to Medicine in the UK.

Mental health services advance and regress in unexpected and puzzling ways. It may be surprising to discover that plans for shared houses to supplement asylum wards had been created, but then abandoned, 150 years ago, even as these institutions became intolerably overcrowded. Yet “cheerful and home-like” houses were developed from offices in the grounds of the Devon County Asylum by Bucknill, its Physician Superintendent, who set out plans for them to replace up to half the wards of an “average” asylum, to be shared by patients and married attendants (Bucknill, 1858).

The first group home for patients from Goodmayes Hospital, which then served a population of about 400,000 in the London Boroughs of Newham and Redbridge, was opened in 1972. The initial seven residents had spent over 200 years in the hospital between them and were prepared for discharge in the Occupational Therapy Department. They were supported by visits from ward nurses and none were re-admitted. The house is still in operation with the number of places gradually reduced to provide single rooms.

With the contribution of the preparation (or “half way”) houses described below, some 20 group homes were eventually opened by the Springboard Housing Association and other associations,  

In 1973 a pre-discharge preparation house was developed on the Goodmayes Hospital campus which was eventually followed by five others, including the former Physician Superintendent’s home, with three to eight places in each. Selection depended mainly on interest in leaving hospital; but reluctance to do so had been shown to reflect lack of information about alternatives and concerns about coping outside (Abrahamson and Brenner, 1982; Abrahamson et al., 1989) rather than determined by the “institutionalisation” which was said to produce a gradual loss ofinterest in the outside world with increasing length of stay (Wing and Brown, 1970).

Patients were given initial opportunities to involve themselves by visits to the house and short periods of day attendance; full-time residence usually lasted a few months but could extend to a year or in a few instances longer. Several patients undertook preparation more than once prior to successful placement and this was facilitated by the variety of accommodation that eventually became available. The houses were staffed during office hours by occupational therapy helpers who modelled and promoted daily living and social skills; they were highly committed and developed warm, informal relationships with residents. Nursing staff provided visiting support at other times, and there was also a high level of involvement from the rehabilitation team.

To the rehab team and myself, it was remarkable how well patients accomplished the transition to small houses after decades in wards of 30 or more beds. But it became clear that more choice was desirable, especially as physical and emotional closeness was uncomfortable for some.

Springboard Housing Association was able to redevelop a former nurses’ home in Newham. Opened in 1983, it incorporated a “core” building with seven bedsitters and three self-contained fiats, and a further eight self-contained fiats at the end of its garden. A kitchen/dining room and two lounges in the main building were open to all residents, as the social “core”.

This complex facilitated both privacy and a variety of social interactors and thus could cater for both intensely withdrawn and volatile residents, a significant issue (Falloon and Marshall,1983).

Although a proportion of the residents had clinical and behavioural characteristics for which 24-hour staffing would now be considered appropriate, it operated successfully until 2010 with three staff on site only during office hours and backup from other housing staff and the rehabilitation team.   

 In 1990 eighteen studio flats and an attached four-place house was opened and demonstrated that flats and communal facilities within a spacious framework enabled both privacy and community; in this case as a “new and indistinguishable terraced addition to a Victorian tree-lined terraced street” (Murphy, 1991).

This format facilitates the provision of 24-hour staffing without intrusiveness and eases the introduction of new residents when vacancies arise, both of which may be problematic in single houses. It also meets particular needs of women residents and members of ethnic minorities, and provided specialist requirements for a group of deaf patients who had been isolated on hospital wards.

Three similar developments by other housing associations followed that provide 12-16 self-contained flats each, in one case with four additional flats close by, and spacious communal facilities; each project has distinctive structural and geographical features.

A number of staffed group homes of varying size were also developed during this period. All of these were supported by the Newham rehabilitation team, in part via two out-patient clinics for long- term patients that combined an open group with individual appointments (Abrahamson and Fellow-Smith, 1991).

REEVALUATION OF CONVENTIONAL VIEWS OF LONG STAY PATIENTS

(1978) considered “the active communal relationship” with doctors, nurses, other patients,

family “or with anyone at all” the most important principle of treatment. But as size and

overcrowding increased, the organisationally convenient view gained ground that long-term patients functioned as isolates.  Lines of stooped, expressionless long-stay patients became iconic of the Institutional Neurosis that was claimed by Barton (1959) to be inevitable in all patients with schizophrenia, although his text also refers to active, cheerful patients. In another hugely influential book Goffman (1968) suggested that the main feeling between mental hospital patients was antipathy and R.D. Laing, published a very negative account of those on a longstay ward (Abrahamson, 2011).

My own experience as a newly appointed consultant in 1971,with responsibility for several long-stay wards seemed at first to confirm such views. But closer engagement and awareness of concern for others even from deeply withdrawn patients pointed to their inadequacy.

duration of 23 years. It was notable that emotionally charged matters, including

members; even the habitually silent members appeared to feel involved (Abrahamson and

Fellow-Smith, 1991).

A series of studies of long-stay patients’ social networks (Abrahamson and Brenner, 1982; Abrahamson, 1993) showed mean network sizes in Goodmayes of ten to 12 constituents, which was larger than those previously considered typical of psychotic patients, although there was wide variation, with some very small networks of four or less and others of 25 or more. They consistently distinguished between acquaintances and friends, who on average formed one-third of the contacts; relationships with patients from other wards were about a quarteroverall of those reported and were significantly more likely than own-ward contacts to involve friendship, trust and confiding; it was thought that this was because they were a stronger expression of choice. Nurses on the respondents’ present ward or elsewhere formed about one-third of the network constituents and many patients clearly regarded them as friends. There were few relationships with people outside hospital and these were almost always with ex-patients or staff, apart from an important component of relatives who provided about 10 per cent of the total contacts and were significantly the most trusted.

 Networks expanded in the 1983 project, despite losses of ward contacts: two studies in its first year showed more than doubling of the mean size. Most of the constituents had present or past involvement with mental health services or were staff who were considered friends, but relatives now constituted 17 per cent compared to the 10 per cent in the Goodmayes study (Abrahamson and Ezekiel, 1984). A social club for patients of the rehabilitation team and others later increased the opportunities for new relationships, and the number of acquaintances made in public places such as churches, shopping places, cafes and pubs appeared also to increase; this is recognised as an important features of modern urban living and has been specifically addressed in Newham (Dines et al. 2006).

 One of the most enlightening aspects of the transition was the empowerment of residents by the recognition that they were in their own homes and the influence this had on their relationships with visiting staff, family and others, which became more informal, close and equal.

When funding  became available to facilitate hospital closures, the general response, promoted by legislation, was to employ a high level of staff working on a shift basis, without due consideration of its effect on the self-identities of residents and possible intrusiveness where the only private spaces are bedrooms. These issues are much less problematic with the individual flats and communal spaces of the larger projects described above. Security of tenure is a feature of the housing ethos that was particularly important for long-stay patients who had virtually no say in their frequent ward transfers.

 Moving to more individual accommodation is always an option if desired and housing associations are well placed to assist residents already known to them to do so. However, moving-on has became the main measure of success for community projects, often based largely on residents potential to “get by” in terms of self-care and underestimating the risk of their social isolation. It was evident at Goodmayes that lack of interest in leaving was better addressed by offering choiceand preparation, considering existing and future social networks. and providing information about the long-term support that would be available, than by pressure to move to meet preconceptions or official targets which might be counterproductive (Abrahamson and Brenner, 1982; Abrahamson et al. 1989).

Appropriate housing for long-term patients is essential if community care is to improve or even for drastic decline to be prevented; they are otherwise likely to return to their only too familiar status of Cinderellas within a Cinderella service (Abrahamson, 2011). It is hoped that this account will draw attention to their particular requirements and remarkable attributes.

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