The challenge of patients with severe psychiatric illness who do not access care – a way forward

Case history

A 23-year-old, unmarried woman was brought to the attention of the outreach team of an urban primary health-care unit by a community volunteer 4 years after her illness had begun. Her parents had tried to get her treated in the early stages of her illness. Initially, they tried indigenous practitioners and later local specialist psychiatric services. However, they were unable to afford the costs of consultation, unable to make the patient swallow the prescribed medication, and they also found it difficult to take her by public transport for reviews at the psychiatric hospital. After an incident, when the patient ran away from home and was found a day later half-naked and wandering the streets, the parents decided that keeping her locked up at home was the only realistic option available in order to keep her ‘safe’. She spent the next 10 years of her life confined to a bricked-up portion of the dilapidated shack in the slum in which the family lived. By the time she was discovered, she had regressed to the stage where she frequently disrobed and spoke only two or three words. She was completely dependent upon her mother for personal hygiene. She had also become dependent on tobacco.

When the Community Based Rehabilitation (CBR) volunteer of the Urban Health Centre of the Christian Medical College, Vellore, and the outreach team approached the parents in 2002, they refused assistance. Six years later, after the parents witnessed improvement with treatment in other members of the community, they asked the primary care doctor to help their daughter. The primary care team made a home visit with a psychiatrist.

On examination, the patient was reported to be disheveled, preoccupied, restless, irritable and actively hallucinating. She was unable to sustain conversation, made raucous vocalizations and asked for beedis (local cigarettes). The right side of her chest and arm was disfigured by burn scars, with significant limitation of movements at the wrist and elbow because of burn-induced contractures.

A diagnosis of undifferentiated schizophrenia (ICD 10 F20.30) was made. Given the difficulties involved in taking her to hospital and making her swallow tablets, an injectable depot antipsychotic fluphenazine decanoate 25 mg (costing Rs30/$0.6 per vial) was given, with her father and three staff holding her down. Trihexyphenydyl 2mg tablets were mixed with food once daily.

Within 3 weeks she began to speak briefly and relevantly and talked about the past. For her second injection she received it voluntarily and even thanked the doctor. After 3 months of monthly injections, remarkable improvements were visible. She was more sociable, helping with household chores and was independent in her daily living. Her beedi intake had reduced but she continued to be impulsively irritable. After 4 months it was possible to add oral risperidone. As she improved, friends and family began to have more interaction with her and she began babysitting her sister's two young children. After 1 year of home treatment, she and her family were able to come to the base hospital for monthly reviews and prescriptions.

Significant deficits in social behaviour and work persist 2 years after the initiation of treatment. It was not possible to start more effective treatment, such as clozapine, in order to reduce residual psychosis. However, this limitation is more due to financial constraints than the fact that the treatment was based in the community. It is equally possible that the same heights to improvement may present even at tertiary level care.

The major portion of psychopathology which had prevented the siblings and society from tolerating the patient while her parents were alive, was removed in time to save her from destitution when both her parents died of physical illnesses within 18 months of initiating treatment. We think this is as practical a measure of success of intervention as any.

Discussion

Mental disorders are among the leading causes of disability in the world. ¹ In India, it is estimated that there are more than 10 million people with severe mental illness and that many of them access alternative care for mental illness rather than psychiatric care or do not receive adequate care. ² Systems in the government and private sector for care of people with severe psychiatric illness are few and far between and systems that are in place on paper by the government and social welfare services are usually not followed. Added to this, there is a great social stigma associated with mental illness.

Unlike some countries that have developed social services and clear guidelines on managing people with psychiatric illness who refuse psychiatric care or are unable to access care of their own volition, India does not have any such effective guidelines for handling people such as our patient. Police are supposed to pick up persons of ‘unsound mind’ found wandering the streets and present them before a judicial magistrate who then passes an order that the person can be admitted to a government assigned psychiatric hospital. ³ However, it has been our experience that this rarely occurs.

This article highlights alternative methods of service delivery where severe psychiatric illness and financial deprivation prevent access to hospital-based specialist psychiatric care. With input from the family, the psychiatrists and the primary care team (physicians and social workers), through home-based delivery of affordable, injectable depot anti-psychotic medications and later oral medications too, significant improvement was achieved and sustained.

The success of this initiative supports the arguments for integrating mental health into primary care. ⁴ The introduction of specialist consultation through a primary health-care team, who is already familiar to the family and the community, does much to allay anxieties and to increase acceptance of psychiatric treatment. Consultation in the community, especially on the ‘invitation’ of the family, overcomes the hurdles of transporting an uncooperative person for those who have no alternative to public transport. The clinical approach of the specialist is informed by the tenets of primary care and, therefore, is much more likely to be in tune with the social, cultural and financial structure of the patients' world. The psychiatrist made only one visit to the patient's home and the rest of the home-based care was coordinated through the primary health-care team.

We suggest that better links between primary care teams and psychiatrists, through home-based care for such patients, would be one way to extend much needed care for those with mental illness who do not access institutional-based psychiatric care.