World Mental Health Day 2014 blog series: Week 2
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 10th 2014: Aided by peer support, recovery is possible for people living with schizophrenia in Uganda
Rashid Male, MPhil DVS is a community development worker, mental health advocate, performing artist and National Programs Manager for HeartSounds Uganda. In this blog, he talks about his experience as a service user and member of the Peer Support Work Initiative in Uganda, and how he believes this initiative is contributing to recovery for people living with schizophrenia in Uganda.
I am a service user working with Heartsounds Uganda, a pilot project in Uganda engaging service users to complement service provision in treatment, care-management, rehabilitation, general community inclusion and re-integration, and rejoining the worlds of work, education and family. Through the Peer Support Work Initiative, I have shared experiences of illness management and recovery with users living with schizophrenia in Uganda, gaining insight into what it is like living with schizophrenia.
Managing the recovery process for people living with schizophrenia to achieve their full functionality is not the role of professionals alone. Rather it is the holistic, collective responsibility of caretakers, professionals, peer groups, community support groups and other well-wishers, with the user at the center stage. It means allowing the user the choice and independence to make decisions and take actions to foster recovery.
In my personal experience, basic interviewing and observational analysis added to medication may not necessarily yield long lasting results. The user should be given more time and authority and power to express inner thoughts, real life experiences and conflicting social, cultural and spiritual phenomenon that the user finds disturbing, in order to explore alternative solutions that yield lasting results on the user’s recovery journey. Letting the user confidently speak out regarding internal and external challenges and experiences can trigger reflective insights into the user’s lived experience of recovery management, and suggest solutions to their challenges.
Schizophrenia may at times become un-manageable, hindering some users’ normal functioning if not treated and managed in early stages. However, early diagnosis by a health professional, added to family support-care, rehabilitation, peer group support, availing social inclusion alternative strategies, and use of alternative care services (say, cultural-spiritual) may help some users to regain normality and functioning.
Given limited knowledge and awareness of schizophrenia by various stakeholders, including some users and others who could assist in providing care, it may take time to achieve this. This is due to lack of detailed educational and public awareness strategies. Detailed knowledge of the nature of the illness is currently limited mainly to professionals. In addition, long-held societal misconceptions, negative cultural-spiritual attitudes, dogmas and norms, falsified beliefs, stigma and discrimination associated with diagnoses of mental illness, with users and their families, and with psychiatric institutions, aggravates the whole issue. However, based on my experiences sharing with other peers in the group, I believe recovery is possible for people living with schizophrenia in Uganda.
October 9th 2014: World Mental Health Day in Jamaica: Raising awareness to improve access to care and support
Maureen Irons Morgan is the Director of Mental Health and Substance Abuse at Jamaica's Ministry of Health. In this post, she talks about the events being held across the country to mark World Mental Health Day this year, and what is being done to raise awareness of mental illness and improve mental health services in Jamaica.
This year's theme ' living with schizophrenia' is an important one, as it sheds light on an illness that can have devastating effects on individuals and families, and even the wider community. Thankfully there are now more acceptable and effective medications to alleviate the symptoms of schizophrenia. However, access to care is still an issue for many, and there is still a significant gap, in many countries, between the number of persons who have schizophrenia and those who receive treatment.
In Jamaica, there will be a number activities to celebrate World Mental Health Day and to increase the public's awareness of schizophrenia and other mental illnesses. We also use every opportunity to promote mental health as an important part of one's health.
We will be launching a Mental Health handbook, and directory of services. This small handbook gives basic information to all users and potential users of the mental health services, and also gives information about how to access the existing services. It outlines how families can assist persons who are diagnosed with mental illnesses, and the role of medication, counseling and social support.
Another important activity is a special outreach to homeless mentally ill persons. These are persons who are likely to be 'living with schizophrenia' on the streets. During the week preceding October 10, we will be increasing our outreach programmes, to the homeless mentally ill. The outreach team will include health workers, social workers, police personnel, legal personnel and human rights activists and advocacy group representatives. The plan is to meet these homeless mentally ill persons and help them to get connected to the medical and social services, as well as to their families. Extra assistance is being given to residential facilities to cope with the increased demands, and persons will also be introduced to rehabilitation and occupational therapy programmes.
Other activities includes a conference around the theme, and health fairs. Using activities like these to get people talking at every level about schizophrenia and mental illness, is an important step in improving awareness and in turn, access to care.
October 8th 2014: How promoting my brother's art is helping people to connect on what living with schizophrenia means to them
Tina Burton is a lecturer in graphic design and new media design at Cambridge School of Art in the UK. Her brother Peter is an artist and was diagnosed with schizophrenia as a teenager. Tina represents her brother professionally, and has coordinated and raised funds to show a retrospective of Peter's work in London this October.
I have just got home from the framers, with all 18 oil pastels duly framed and ready for the upcoming exhibition at the Brick Lane Gallery in London (October 9-20). It’s a strange feeling to be organising an exhibition of my brother’s work whilst knowing that although aware I am doing so, it is very unlikely that he will actually see it. Peter was diagnosed with Schizophrenia when he was 19; he has never made any kind of recovery. I felt like I had lost my brother.
Peter was always artistic, although schizophrenia stole his interest and motivation to create art for nearly thirty years. Suddenly one day he simply picked up some old felt tip pens, scrounged some paper and began to draw. It is very hard to pinpoint what the trigger was. In any case he draws and paints every day in his small bedroom despite having no support, facilities or guidance. The only thing he does have is my Mum who encourages him and helps him buy materials with the little money he has, that and the desire to be creative.
His work is so striking and accomplished that I decided to represent him professionally and approached some galleries. I questioned initially whether to mention his mental health; would the art world be prejudiced?
Partly to get around this problem, I decided to find a gallery that rented out space and to raise the money for the exhibition through crowd funding website kickstarter. It was a great success; support came from all over the place, people who had known Peter as a kid, old neighbours, friends of the family and complete strangers all pledged and we ended up exceeding our £1000 target. Social media meant that people could see his work online and connect with each other; so many stories emerged about other people’s experiences with schizophrenia.
It has been quite an extraordinary few weeks and now my brothers work will be seen alongside professional artists in a trendy gallery in the heart of London. It seems very fitting to me that as it turns out it is World Mental Health Day the day after the exhibition opens.
Saachi online: http://www.saatchiart.com/peterburton
October 7th 2014: Living with schizophrenia - what about dying with it?
Dr Nirmala Srinivasan is the director of Action for Mental Illness (ACMI) India. In this post, she discusses the importance of social recovery for people living with schizophrenia, and the challenges individuals and their families face in achieving this in India.
The theme of “Living with schizophrenia” is important, but to me dying with schizophrenia is just as important.
Parents, families, friends and mental health workers are dogged by questions of semantics, of the exact definition and scope of schizophrenia. How is it different from mental illness generally? Or from schizophrenia spectrum disorder? At ground zero the challenges associated with one or the other is only a difference of degree, and not of kind.
The diagnosis doesn’t matter. What matters is the trauma of social death. Polypharmacy prescriptions are proliferating just like newer and newer drugs. "The most striking overall finding of the International Study of Schizophrenia (ISoS) is that the current global status of over half of these subjects —56% of the Incidence group and 60% of the Prevalence group—is rated as “recovered.”
But clinical recovery is not synonymous with social recovery. Living with schizophrenia becomes a revolving door of denial, fear, isolation, admission and discharge, medicines and side effects; drop-out, divorce, joblessness; families in disarray and dismay; suicides and stigma. Social death is factored into the lives of even “recovered” persons so much so the lines between living and dying get blurred. Let’s consider those the challenges of those literally living and dying with schizophrenia in a place like India where I work.
About 70 to 80 percent of mentally ill persons in India live with their families. As we all know, the caregiving family also has a lifespan influencing the quality of care to mentally ill family members. The challenge of lifelong care looms large over many Indian families.
Almost every month, the Indian police respond to calls from residents and recover people with mental illness who are dead or dying without care. Does it matter then if they are clinically recovered? A recent article in Times of India (dated 08.09.14) reported of a 60 year-old doctor who died of starvation because he had depression; his 55 year-old brother, an ex- India Air Force officer, lived with his corpse because the boundaries between life and death had no meaning. He was also mentally ill.
Without appropriate support to families and individuals living with schizophrenia, it can symbolise life without living and death without dying.
 Recovery from schizophrenia: an international perspective—results from the WHO-coordinated international study of schizophrenia (ISoS). (2007) edited by Kim Hopper et al. OUP USA
October 6th 2014: Providing community care for people living with schizophrenia
Dr. Emeka Nwefoh works with CBM International as the Mental Health Advisor for Nigeria. In this blog, Dr. Emeka describes the approach CBM has taken within the West African region to developing, delivering and scaling up community-based services for people living with schizophrenia.
In Nigeria, as in most developing countries of the world, despite advances in the understanding of its causes, course and treatment, schizophrenia continues to have a huge negative impact on the lives of those with the condition. Persons living with schizophrenia are erroneously believed to be possessed by demons, are feared, flogged, chained, disowned or locked up in prisons, even though schizophrenia, like most mental illnesses, is treatable.
Though faced with the great challenge of inadequate human and financial resources, with less than 200 psychiatrist, less than 5000 Psychiatric nurses and very few psychologists and social workers for a population of 170 million people, some significant marks are being made in using the available resources to adequately manage and reintegrate persons with schizophrenia into the community.
Together with local partners, CBM has:
Been able to integrate mental health into primary health care in Benue, Abia, Anambra, Imo and Ebonyi states with a combined population of over 20 million persons
Created awareness on mental illness through Village Health Workers and government structures in 4 of the 5 states in the South Eastern Nigeria
Trained mental health advocates and leaders to lead the process of change in mental health in Nigeria and 4 other Anglophone West African countries of Ghana, Sierra Leone, and The Gambia
Formed Self Help Groups comprising persons with psychosocial disability and their careers for peer support and advocacy
Established a National Mental Health Stake Holders Council in Nigeria, Ghana, Sierra Leone and The Gambia
Trained and retrained primary health care workers to be able to provide up to date services in mental health
Provided quality and affordable drugs in the community
Trained mental health nurses
Provided referral support from mental health professionals
CBM was also involved in the drafting of the recently adopted mental health policy, and the mental health bill currently being considered for passage by the national assembly. These are exciting times for scaling up mental health services in Nigeria!
Images courtesy of Valentina Iemmi. Copyright © 2014 Valentina Iemmi. All rights reserved