2 April 2017: Day in and day out, *Parvathy hears voices around her. She doesn’t know who these people are or why they are screaming abuse at her. After a point she loses control and responds in kind, with abusive language and sometimes, out of frustration, violence. Parvathi suffers from schizophrenia. The voices exist only in her head; but for her, they are as real as the voices of her husband and two children at home. It is not easy for ‘normal’ people to understand the trauma that a schizophrenic faces every single day – delusions, hallucinations, difficulty managing emotions, inability to relate to family and community and confusion between the real and imagined. The villagers do not like to be around Parvathy because of the abusive language she uses. Some time ago, Parvathy’s husband fell ill and was unable to care for her. She now stays with her mother in another village.
A few weeks after the world celebrated International Women’s Day, Pavitra, Subject Manager – Health, visited a remote village in the Nilgiris to follow up on patients with mental illness in the area. This village is one of the areas where the Keystone’s Mental Health programme is active. She met with six patients (including Parvathy) and the caregiver of one patient who could not make it to the meeting point. The Community Health Worker, Dhanalakshmi, brought one new patient to her attention. Three of the patients are responding well, thanks both to medications and the dedication of caregivers. But the other three are not so fortunate and have been having frequent relapses. Reasons for this include, amongst others, inability of caregivers to provide sustained attention, non-adherence to medication regimen, and non-availability of doctors during symptomatic episodes. In addition to these, it is also probably the inability to fathom the consequences of the illness and the tug-of-war between wage work and caring for a person results in the patient being neglected.
Studies have shown that mental illness reduces not only the productivity of a person but also their life span.*Bhama is another patient who is relapsing because she does not have a caregiver. Bhama has schizophrenia compounded by malnutrition and severe anaemia. She lives with her relatives doing their household chores. Living with them ensures three meals a day of whatever nutritional value, but the relatives are not much concerned about Bhama’s health and have never come in for a consultation. Being a single woman, she has to provide for herself, but her schizophrenia symptoms have left her unable to work for a living. Without income, she has inadequate nutrition, which further debilitates her. It is a vicious circle and without intervention, it is only a matter of time before her life tailspins out of control and we lose her.
Of crucial importance in treating mental illness is consistency of care. This is difficult to maintain for two reasons, firstly the remoteness of the villages and secondly, the common perception that mental illness cannot be helped by simple treatment methods. Pavitra and the Health team are training individuals from the villages who have shown the interest and competence to be community health workers (CHWs) and help break the stigma surrounding mental health. Dhanalakshmi has recently started working in Aracode as a CHW and has been excellent in monitoring the patients. Persons like Dhanalakshmi are a bridge between doctors and patients and part of the process of ‘task shifting’ wherein some tasks are moved away from doctors to less specialized health workers who have better direct access to the patient. This process has been used effectively in many countries. Therefore, CHWs are possibly the best solution to delivering care to patients in remote locations. Keystone currently has four CHWs working in Aracode, Sigur, Pillur and Hasanur and we need to be able to train more of them.
It has been the experience of Psychiatrists that General Physicians can easily detect common mental disorder as patients usually approach the GP for help with somatic symptoms. In the case of Keystone project areas, the GP’s place is taken by the Primary Health Centre (PHC) doctor as he/she is usually the first point of contact according to the baseline health survey conducted by Keystone.
This is because, usually a minor population of people have severe mental health issues, while the larger population, especially women, suffer from common mental health issues like depression which is equally debilitating. Such patients present with multiple body aches, headaches and other somatic symptoms for which they seek medical intervention, usually from the PHC. So, it becomes crucial that the PHC doctors be trained in identifying mental illness and administering psychological ‘first aid’ before referring to a specialist. Keeping in mind the problems related to non-adherence to medication and physically visiting the patient during symptomatic episodes, Pavitra has been discussing with specialist organisations like ASHWINI and Banyan who are collaborating with Keystone, the possibility of long-acting psychotropic injectable medications for schizophrenia and tele-consultations.
The long term impact envisioned by Mental Health is to educate and empower communities to be able to identify the illness at the primary stage and bring back community cohesion and provide some livelihood options. This gives the patient a safe and secure environment where he or she can heal. The community would be able to collectively take care of the patients and bring them back into mainstream life with dignity and Keystone would remain in the picture as a networking and knowledge support partner for emergencies or complications.
To realize this vision, the following activities are being implemented:
- Medication support for identified patients including long-acting injections for schizophrenia.
- Monthly tele-consultations with established Psychiatrists familiar with the area and common social issues
- Quarterly health camps with collaborating organisation (ASHWINI)
- Continued training of Community Health Workers like Dhanalakshmi and identifying and training enough number of CHWs to cover other areas.
- Sensitize PHC doctors to the importance of their role in identifying patients with mental illness and educate them on simple treatment methods.
- Livelihood options for patients customised to accommodate limitations in their ability and circumstances.
There is no loneliness greater than the one imposed by mental illness. When comparing symptoms of schizophrenia with depression or anxiety, it seems easy to say that schizophrenia is more severe, but underestimating the effect of chronic depression is like underestimating the trauma that a waterboarding victim undergoes. For a practicing psychiatrist, it is difficult to spare an entire day to review a few patients. But for patients like Parvathy, this can mean the difference between living life as an outcast and living life as a wife and mother.
*name changed to protect identity