World Mental Health Day 2014 blog series: Week 4
2. What are you doing, and what should others do to address the challenges of living with schizophrenia?
Throughout October, we will post responses from individuals sharing a range of perspectives, experiences and insights on what the theme of 'living with schizophrenia' means to them.
October 23rd: Living with Schizophrenia: Telling my story through campaigning, advocacy, training and art
Dolly Sen is a writer, film-maker, mental health consultant and trainer, with lived experience of psychosis, mood disorder and PTSD. Here, she discusses why telling her story helps her to campaign, advocate and change perceptions on what 'living with schizophrenia' means.
I used to have the diagnosis of schizophrenia but I don’t any more, even though I still have some of the same kind of experiences. The clinicians who work with me had the kindness and foresight to know how damaging the ‘schizophrenia’ label can be for those who want to make something of their lives. You would be surprised how many more doors open when you don’t use that word. That word brings so much fear and ignorance to the table. It has never been useful to me. I prefer the word ‘psychosis’ if I have to put down anything. But what I prefer to say is that the experiences I have are metaphors that hold trauma I can’t look at head on.
More and more studies are linking adverse childhood experience to schizophrenia (Andrew et al, 2008; Romme et al, 2008; Moskowitz & Corstens, 2007; Read et al, 2001; Read et al, 2005). Yet little is being done to address that in mainstream psychiatry. Can a tablet ever heal abuse? It might pause the pain, but it is often only masking it, not dealing with it. It is only when I started dealing with that part of it, my psychosis went from HD surround sound to a TV of psychosis without an aerial. The stress vulnerability hypothesis is just that; the pain of the past is definitely more real. For me, it is more about healing the broken heart rather than the broken brain.
What am I doing personally? I campaign, advocate and try to improve services. I train mental health professionals. I make art and films about it.
I am also telling my story to show the world I am not an axe-wielding murderer but an intelligent, kind person who has these experiences. I am also telling my story because psychiatry has largely ignored it. Only those who have listened have been trusted, and only those who are helping me try to make sense of and re-write that story, so the pen of life is in my hands and not the psychosis, have done any good.
Andrew, E., Gray, N., & Snowden, R. (2008) The relationship between trauma and beliefs about hearing voices: A study of psychiatric and non-psychiatric voice hearers. Psychological Medicine, 38(10), 1409-1417.
Honig, A., Romme, M., Ensink, B., Escher, S., Pennings, M. & deVries, M. (1998) Auditory hallucinations: A comparison between patients and nonpatients. Journal of Nervous and Mental Disease, 186(10), 646-651.
Moskowitz, A. & Corstens, D. (2007). Auditory hallucinations: Psychotic symptom or dissociative experience? The Journal of Psychological Trauma, 6(2/3), 35-63.
Read, J., Perry, B.D., Moskowitz, A. & Connolly, J. (2001). The contribution of early traumatic events to schizophrenia in some patients: A traumagenic neurodevelopmental model. Psychiatry, 64(4), 319-345.
Read, J., van Os, J., Morrison, A., & Ross, C. (2005). Childhood trauma, psychosis and schizophrenia: A literature review with theoretical and clinical implications. Acta Psychiatrica Scandinavica, 112(5), 330-350.
October 22nd: Schizophrenia: quality of life and drug treatment
Ursula D'Souza, senior editor of BMC Medicine, wrote this post to mark world mental health day, highlighting recent research on schizophrenia. The blog was posted originally on the BioMed Central blog, on October 10th and is reproduced here with kind permission.
To recognize World Mental Health day and its focus on living with schizophrenia we‘ve taken a look at some recent research emphasizing quality of life and treatment for those affected by this chronic mental condition.
Seven adults out of every 1,000 have schizophrenia, with half of affected individuals not receiving appropriate care. Over 90% of untreated people are from low- and middle- income countries. The WHO Mental Health Gap Action Programme (mhGAP) aims to scale up services for mental disorders in these countries by ensuring proper care, psychosocial assistance and medication.
Quality of life
Living with schizophrenia affects daily life. A recent study from the UK, highlighted in the news, showed that delusion prone schizophrenic patients are less likely to wait for the best moment before making a decision. The affected individuals tend to rush to make choices in their everyday lives which results in unsuccessful outcomes. Therefore, these patients need to be educated on the consequences of reaching inadequate decisions.
With regard to schizophrenia in low- and middle- income countries, Vikram Patel has discussed research and capacity building. He also calls for advocacy to develop policies which will improve access to care for people living with mental disorders around the world, with a particular focus on those countries where the treatment gaps are the largest.
Improving care of mentally ill people in the developing world has been addressed lately in a cross sectional survey by Martin Prince and colleagues which demonstrates that psychosis is common in homeless people living on the street in Addis Ababa. This study suggests that strategies to improve conditions for the homeless in low-income countries should include treatment for mental disorders including schizophrenia. The authors conclude that:
“These countries should develop models of intervention with social engagement and family re-integration at their heart. However, what model of care should be implemented for this population in a low income country has to be defined”.
Risperidone, an atypical antipsychotic drug is one of the pharmacological therapies used for schizophrenic patients. Interestingly a retrospective association study of risperidone prescribing rates performed by Brian Godman and colleagues shows prescribing of generic risperidone has decreased compared with other atypical antipsychotic drugs in Western Europe. However, utilization and price of the drug vary across countries, suggesting a need for increased prescribing and reduced price.
Conversely, Michael Berk and colleagues argue for a balance between cheapest drug use and optimal tailored care to ensure beneficial patient outcomes when treating with a broad range of atypical antipsychotics. The authors highlight caution that:
“Mandating switching to a generic atypical antipsychotic without any corresponding clinical indication may result in increased risk of relapse, reduced adherence, poorer outcomes and greater ultimate health care costs.”
Overall, the studies described above show treatment of individuals affected by schizophrenia in low- and middle- income countries is greatly needed to help improve their quality of life. Whereas in high income countries in Western Europe a personalized drug therapy approach will ensure better management of individuals suffering from this severe mental condition.
October 21st: Living with schizophrenia in the mountain kingdom: what Lesotho's Ministry of Health is doing to improve treatment and rehabilitation services
Michael Lebina is the Director of Mental Health Services at the Ministry of Health in Lesotho.
Here, he describes the challenges facing people living with schizophrenia in Lesotho, and the work being done to improve treatment and rehabilitation through a national Mental Health Programme underpinned by support from a Community Mental Health Team.
Schizophrenia is a mental illness prevalent across the world, irrespective of race, cast, colour of skin or educational level. Lesotho has got its share of the burden of this illness. The important issue is how those living with Schizophrenia and their carers cope with this challenge. Success in the care and management of this illness depends largely on the availability of treatment systems and rehabilitation facilities.
Schizophrenia is a highly prevalent mental disorder in Lesotho, constituting almost 29% of the disease burden among the mental disorders (Ministry of Health, Lesotho, Annual Joint Review Report, 2012/13). The situation is exacerbated and compounded by cultural definitions that influence expression of violence and violation of human rights towards the victims of this illness.
In Lesotho, the Mental Health Programme and the National Mental Health Hospital, Mohlomi Hospital, are at the forefront to deal with improving treatment. A system is in place that ensures all patients in contact with the mental health services are followed-up by the Community Mental Health Team (CMHT). CMHT efforts are directed towards strengthening the support systems of people living with schizophrenia at the family and community levels. They also ensure drug compliance including community based rehabilitation activities.
However, the CMHT is only found in one of Lesotho’s districts, Maseru. In the other nine districts the support activities are carried out by one sole district psychiatric nurse who manages the District Mental Observation Units, attached to the main district hospital. District psychiatric nurses also provide training to other general health workers on the care and management of people ling with schizophrenia as well as training community health workers on identifying people presenting with signs and symptoms of mental disorders for early referral, which leaves the systems quite overstretched.
Recently the Department of Mental Health Services convened a meeting to address challenges faced by homeless people in Maseru, particularly those with mental illnesses. The meeting appointed a task team mandated to identify these individuals around the city of Maseru for referral to appropriate levels of care where necessary and endeavours to strengthen patients’ supportive system through involving their significant others where possible. However, challenges to be overcome include the reluctance by Ministry of Social Development staff to prioritise issues pertaining to people with mental disorders and inadequate financial and human resources in order to necessitate the smooth dispensation of the task team’s mandate.
Irrespective of the outstanding barriers, significant milestones has been achieved in terms of addressing the challenges faced by those living with mental illness and schizophrenia in the mountain kingdom, and efforts will continue.
October 20th: Telling stories about living with schizophrenia
Erminia Colluci is a researcher, ethnographic documentary film-maker, psychologist and advocate. Erminia is based at the Global and Cultural Mental Health Unit, Centre for Mental Health (formerly Centre for International Mental Health) at The University of Melbourne. Her main areas of research and training are in Community and Cultural Psychology/Psychiatry, with a focus on suicide and suicide prevention. In this post, Erminia explains why she believes telling stories about living with schizophrenia is so important.
My key interest is in the cultural context of mental ‘illness’ and health, thus if I think about ‘living with schizophrenia’ I think about ‘living where’ and ‘who is in the person's surroundings, what do they believe and how do they make sense of it’. I love stories, I believe stories are important because they make distant concepts become closer to us and more understandable, including sometimes for the story-tellers themselves.
Recently I have been working on a few projects involving ‘first-hand experiences’. One of them was about exploring the concept of recovery among people with emotional and mental health issues from immigrant or refugee backgrounds. These digital stories were created during a four-day workshop. Each person wrote, voiced, created and edited their film. Half of the people involved had a diagnosis in the schizophrenic spectrum. Making these stories has been an important journey for all parties involved, the storytellers, their families and carers and us, the organizers. The stories provide a window in what it ‘might be like’ living with a mental health problem such as schizophrenia and more importantly what it might be to living a meaningful life as someone with schizophrenia. This takes me to another project I am currently completing, an ethnographic documentary series called Breaking the Chains about people who live in isolation, chained, and/or inside “animal cages”, naked, undernourished and even living in their own excrement because of their mental health issues. You can learn more about the film here. This practice is known as ‘pasung' in Indonesia and a great number of the ‘victims’ of pasung are diagnosed with a schizophrenic disorder.
Breaking the Chains contributes to an understanding of pasung, the reasons behind its practice, the issues that must be overcome and the social and political activism needed to eradicate this form of human rights abuse in countries all over the world.
Breaking the Chains is intended to provoke a conversation, action and change, around when living with schizophrenia and similar issues means being deprived of even the most basic human rights. This work is a reminder that the defense of life (three of the people I filmed died within one year from filming them!), dignity and other basic rights is the responsibility of all of us and nobody should die or live a miserable existence because of schizophrenia or any other mental health disorder.
As I love stories, I love stories with a good ending and I hope to live long enough to make an ethnographic research film to show the amazing work done by government and non-government bodies to eradicate, once and for all, any form of abuse towards people living with schizophrenia…and write the words “The End”!
Images courtesy of Valentina Iemmi. Copyright © 2014 Valentina Iemmi. All rights reserved