Broken Promises in Long-term Psychiatric Care: Lessons from the UK National Health Service.
- Posted by Editor JPR
- Posted in Editorials & Commentary
Journal of Psychiatry Reform vol. 10 #6, June 2023
Author
DAVID ABRAHAMSON MBE, FRCPI, FRCPSYCH
Dr. David Abrahamson, worked as a consultant psychiatrist at Goodmayes hospital in the UK. From the early 1970s until the late 1990s he led a psychiatric rehabilitation team that successfully transitioned long stay patients into shared housing in the community. For his work he received the MBE.
SECOND CLASS PATIENTS
In 1961 Enoch Powell, the then Minister of Health, announced the closure of half the UK’s mental hospitals, which he declared were outdated and too expensive to run. Acute services would be situated in wings of general hospitals and long-stay patients were largely considered hopeless. [1]
The founding statute of The Maudsley Hospital, which opened in 1923 and became the UK’s outstanding postgraduate teaching hospital, with an international reputation, restricted in-patient treatment to one year. Graduates became consultants, teachers and role models elsewhere without any experience of long-stay wards. Excluded or discharged patients were likely to find themselves in asylums with a fraction of its resources for many times the number. Similarly, there were five doctors for 2250 patients, many with epilepsy, in Colney Hatch asylum compared to twelve for seventy-five in the then National Hospital for the Paralysed and Epileptic, now the National Hospital for Nervous Diseases. [2]
Dementia Praecox and Schizophrenia
At the turn of the previous century Emil Kraepelin, then the most eminent German psychiatrist, described Dementia Praecox as a disease entity of younger people analogous to dementia in the elderly. This had a profoundly demoralising effect on generations of mental health professionals, families and patients even after recognition, including by himself, that reconstructions of the courses had been faulty. [3]
Schizophrenia was described in 1917 by Eugen Bleuler who was superintendent of the Bergholzi Hospital in Zurich. He had concluded that the appearance of dementia was due to splitting of cognitive processes by dissociation. Emotions were similarly split although positive emotions were preserved. But he was no less pessimistic than Kraepelin: his son Manfred, who succeeded him as medical superintendent, reported his pleasure when a group of former patients with whom he had previously lived greeted him warmly, mixed with sadness that ‘nothing can stop this disease’. But he had missed a number who had been well enough to be discharged or were on leave. Manfred assessed 208 patients at regular intervals after their first admissions and concluded that on the contrary a fifth had been stable for twenty years or longer. An additional thirty-five percent had only mild psychotic symptoms such as passivity or delusions.[4]
Following a study of 491 long-stay patients at Goodmayes Hospital in Essex, of which half had been in the hospital for twenty years or longer, a third for forty years or more and five percent for half a century, it was at first assumed that progressively worsening institutionalization was the main cause cause[5] but after contact with many of them and examination of case notes year by year striking resemblances between their current states and those on admission were obvious, due to long stable periods in between which were later foundations for rehabilitation and resettlement.[6, 7]
To stay or go
Most surveys of long-stay patients’ attitudes to leaving hospital concluded after a few brief questions that they were mainly indifferent or negative. But they lacked the information to make the decision as in the above study nearly half thought they would be homeless unless they could return to family or rent a home and a third that they would need a job to have any money. From 1973 onwards they had opportunities to gain information and learn domestic and social skills in houses on the hospital campus staffed by occupation therapy helpers who made very positive relationships with them. Even those with severe incoherence of speech or muteness were able to indicate preferences for the future.
Community developments
Eight group homes were developed in the community by housing associations from 1974 onwards and residents became tenants with the corresponding rights. Their ability to manage the transition from large wards to small houses was generally remarkable but a range of provision was desirable to provide more choice. Four staffed projects based on flats with a hub for activities and a dining room if required were developed from 1985, each with their own character. Special assistance was provided for speech impaired residents in the first, which was described as like the continuation of a row of Victorian terraced houses. [8]
Freedom denied
Expectations had grown that compulsion would become less and less a part of mental health services and this was the main purpose of the 1983 Mental Health Act. On the contrary, involuntary admissions increased year by year. Acute wards in which involuntary patients had been a minority became almost confined to them. Explanations included population changes, increased homelessness and rough sleeping and repeated admissions due to lack of community resources. In addition the doctor-patient relationship had been reduced to a legal contest carried out by strangers to the patient and vice versa whereas the previous approach had been a form of legal arbitration. Many are now in privately run secure units distant from their relatives and other contacts. [9]
The rehabilitation team
A multidisciplinary rehabilitation team was developed in the 1970s, comprising community psychiatric nurses, psychologists, occupational therapists and a speech and language therapist, with an outstanding manager. It developed a very empathic patient centred approach and served new community patients as well as former long-stay.
Two informal weekly groups were held within day hospitals in different parts of the area, facilitated by the rehabilitation psychiatrist consultant or a clinical assistant with one or two CPNs and a social worker and eight to fifteen patients in each. Most attenders had diagnoses of schizophrenia and bipolar disorder was the next most frequent. Discussions were usually lively, sometimes volatile, and covered day-to day issues, work and leisure, illness and medication. Mutual tolerance and empathy were striking features. Banter could shift quickly to tactful attention if a bereavement or other personal distress was brought up and the predominantly optimistic atmosphere might give way to a sense of the loneliness and hopelessness experienced by many long-term patients. Some attenders were silent but showed interest and concern by their expressions and postures. Individual appointments were arranged in advance and could also be requested on the day.(9)
A weekly evening club with a meal, conversation and table tennis or snooker and board games was also organized and other activities included Xmas parties in a large pub where eighty or more patients with some relatives took part. Bus trips and weekends away were chosen by the members. Similar activities had taken place at the hospital but relationships between staff and patients were much more equal, and they were free of the racial tensions developing in the community at that time. Friendly relationships had been encouraged for periods in several hospitals in the past, including the Bethlem, the Bergholzi and as part of Moral Treatment at the Retreat at York which opened in 1796, but became exceptional as overcrowding intensified in Victorian asylums.
A failed revolution
The development of effective medication after the second World was a revolution but has since been compromised by overpricing and the distortion of the aims and results of drug trials, with co-operation from some medical experts and journals despite supposed safeguards.
The top down diagnostic criteria of DSM 5 has also lead to problems. Reliability is their supposed strongpoint but this is misleading. Many are invalid as patients may be given the same diagnosis without any symptoms in common. The insistence by medical insurance companies that prescribers shoehorn patients into its categories imposes a major burden on them and some opt out to the particular disadvantage of patients living in poverty. A diagnostic approach based on dialogue would reflect patients experience and might reduce their sense of difference and the stigma they experience.
An unexpected end
NHS management disbanded the Rehabilitation Team and stopped funding its activities early in the present millennium, more than thirty years after it’s inauguration. This was part of a top down reorganization in which any concern about the distress caused to dedicated staff and mainly poor patients was overridden by political pressures despite public avowal of a policy of levelling up. Re-organizations are beloved of the NHS and hopefully a future one will lead to a caring and resourceful rehabilitation team being formed again.
David Abrahamson
References
- Powell E. The Water Tower Speech to the Annual Conference of the National Association for Mental Health (1961) .
- Hunter R, McAlpine I. Psychiatry for the Poor. W. Dawson and Sons. Ltd. (1974) .
- Kraepelin E, Johnstone E. Text book of Psychiatry 6th Edition. William Wood & Co. (1913). German original 1893.
- Bleuler M. The Schizophrenic Disorders, Long-term Patient and Family Studies. New Haven & London. (1978). German original 1972.
- Abrahamson D, Brenner D. Report to the Department of Health (1977).
- Wing JK, Brown, GW. Institutionalisation and Schizophrenia: A comparative study of three mental hospitals 1960-1968. Cambridge University Press (1970).
- Williams CW, Collins AA. Construction of Disabilities in Schizophrenia. Qualitative Health Research, March 2002.
- Murphy E. After the Asylums, Community Care for the Mentally ill. (1991) Faber & Faber.
- Abrahamson MW. The development of legal arbitration. The International Journal of Arbitration, Mediation and Dispute Management 86 2 (2020).
- Abrahamson D, Brenner D. Combined group and individual out-patient clinic.. Do long-stay patients want to leave hospital ? Health Trends (1982) 14 95-97.
- Abrahamson D, Swatton J, Willis W. Do long-stay patients want to leave hospital ? Health Trends (I989) 21 16-21.
- Abrahamson D, Fellowe-Smith E. A combined group and individual long-term outpatient clinic. Psychiatric Bulletin, (1991) 15 486-7.
