Why some patients remain stuck in institutional care – for decades
But it’s the NSW Ombudsman’s recent report, Denial of rights: the need to improve accommodation and support for people with psychiatric disability, that provides perhaps the starkest reminder of the gulf between the experiences of some patients, who remain stuck in institutions, and the enlightened rhetoric of policy.
The report found that many people living in mental health facilities do not clinically need to be there. It notes that mental health legislation and United Nations principles require the care and treatment of people with mental illness to be provided in the least restrictive environment possible.
It says: “The conservative estimate is that around one-third of people currently living in mental health facilities in NSW could be discharged to the community, if appropriate accommodation and supports were available.”
The Ombudsman’s inquiry reviewed the files of 95 people in 11 mental health facilities across NSW, who had been identified as being unable to move to the community due to a lack of appropriate and available accommodation and support options, or who were admitted to a unit that was considered to be inappropriate to their needs.
The patients ranged from 24 to 82 years; most had a psychotic illness, as well as other conditions, including significant physical health problems, such as obesity and diabetes. Over 60 per cent had a cognitive impairment, including 32 people with an intellectual disability.
Thirteen people had been in hospital for over 20 years, including two people who had been admitted as teenagers and had remained in hospital for over 40 years.
Of the 80 people in the review whose views were recorded in their files, two-thirds (54) indicated that they wanted to be discharged.
Of the 82 people judged clinically well enough to be discharged, there was no evidence that any discharge planning had occurred for one-third (26), all of whom were still admitted.
The inquiry found that the scarcity of appropriate community-based accommodation and support, the exclusion of people with a primary diagnosis of mental illness from accommodation funded under the Disability Services Act, and practices in mental health services were some of the factors keeping patients in institutions.
It recommended that the agencies Ageing, Disability and Home Care (ADHC) and NSW Health should work together better, and that people with psychiatric disability should no longer be excluded from disability services on the basis of their mental illness.
The report says the impact of institutionalisation of patients is significant:
“It reduces the already limited capacity of mental health facilities to admit and retain people who are acutely unwell and need intensive clinical support, and to move patients from acute units to less intensive rehabilitation units. It also adversely affects the use of rehabilitation units, turning them into long-stay accommodation instead of transitional places focused on clinical rehabilitation and recovery.
The impact on the individuals is also considerable. Some are inappropriately accommodated in acute or other secure units, and many have been in hospital so long that they have developed institutionalised behaviours.”
Meanwhile, in the article below, psychiatrist Dr Michael Robertson argues that the situation for such patients is unlikely to improve until mental illness is viewed through a social justice rather than a biomedical framework.
Improving access to services in the community is vital
Michael Robertson writes:
In June 2011 the NSW Ombudsman reviewed the files of 95 patients of mental health units in NSW.
These patients had been in hospital for prolonged periods, in some cases years, due to a lack of appropriate supported accommodation in the community.
In many cases, the patients were well enough to be cared for by community mental health clinical services, although their level of impairment of self-care precluded independent living.
The Ombudsman found that there was profound under-resourcing of this area, compared with national and international figures and that such inadequacies raised concerns that could be expressed in terms of a denial of “human rights”.
Many clinicians working in oversubscribed mental health services are exasperated by the lack of adequate supported accommodation.
Some laudable initiatives, such as the Housing and Accommodation Support Initiative (HASI), provide the kind of supported accommodation that allows people with severe and debilitating mental illness to live autonomous and dignified lives as part of the community.
Not surprisingly, HASI packages are in limited supply and delays in accessing them leads to prolongations of inpatient stays.
The downstream effects of this are not hard to imagine: access block to acute mental health beds for other acutely ill patients; oversubscription of the limited resources of the non-government sector and; community mental health clinicians becoming defacto social supports, thus limiting the capacity of their services to respond the needs of other patients.
The situation in NSW has been made worse by a recent policy shift that allows the equally under-resourced Ageing Disability and Home Care (ADHC) service within the Department of Family and Community Services to resile from its obligations to people with mental illness, by capitalising on a false dichotomy between intellectual disability and severe mental illness.
As a psychiatrist working in public mental health clinical services, I cannot in clear conscience discharge my otherwise well patients to overcrowded and Dickensian low-cost accommodation, or to the street.
Boarding houses, rooming houses and prisons have become our defacto asylums.
I am equally anxious at the diversion of the focus of mental health clinicians in the community, from the clinical care of distressed or acutely ill patients to the tasks of basic support of significantly disabled people.
Are we best served by highly skilled community psychiatric nurses spending up to half of their time supervising medication or ensuring there is enough food in someone’s fridge, rather than assessing and managing acute presentations to their services? This leads to suboptimal care for all.
Mental health, and mental illness, is determined as much by social disadvantage as biology.
We have all been duped by the simplistic assertions of the medical model of care in mental health, which equates schizophrenia with heart disease or cancer.
This analogy works in reducing stigma and promoting acceptance of mental health as an important issue, but misses the point in the care of those suffering mental illness.
Human flourishing beneath the burden of severe mental illness is possible, but seldom so with antipsychotic medication alone. To suffer mental illness is to be caste into a social role of disadvantage, unemployment, poor physical health and isolation.
To become part of the community and realise one’s potential requires the preconditions of a home, a social support network and a measure of stability in life. Not always possible in a boarding house with little to rely on other than nicotine.
Until we as a culture and a society can see that mental illness is as much a question of social justice as deranged brain activity, these people – our most vulnerable fellow members of the community – will endure the kind of second class citizenship we like to pretend does not exist in post-industrial Australia.
• Michael Robertson is Clinical Associate Professor at the Centre for Values, Ethics and the Law in Medicine at the University of Sydney.