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Small steps - context, learning and models of community and primary mental health in North India

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Title: Small steps - context, learning and models of community and primary mental health in North India
Creator: Kaaren Mathias
Date: 2015
extracted text: St-fo.

Small steps - context, learning and models of community and
primary mental health in North India
By Kaaren Mathias (MBChB, MPH, NZCPHM)1

Mental health programme manager - Emmanuel Hospital Association

Mental health - both illness and wellness are too entangled and complex, to be tidily described with
neat packages. The boundary between mental distress, and a mental disorder is blurred. The

Diagnostic and Statistical manual V (DSMV) which has long been used to describe and define

psychiatric illness has increasingly been critiqued as 'disordering' many experiences that are part of
the human condition (Drake, Binagwaho, Martell, & Mulley, 2014; Jacob & Patel, 2O14).^There is an
urgent need for countries like India to continue to develop and disseminate models of mental health

care that are centred in communities, appropriate to cultural contexts, work actively to address
mental health determinants such as employment and social inclusion, and emphasise psycho-social

interventions which are more durable and have few side effects than drug therapy (Drake et al.,
2014). 7
At the same time, perhaps 90% of people in India with mental disorders do not have any option of

access to allopathic (bio-medical) care (World Health Organisation, 2011)jNeuro-psychiatric
disabilities may contribute up toll.8% to the overall burden of disease in lndia(Shidhaye & Patel,

2012) and disability due to mental disorders generally is compounded because of their early age of
onset, lack of access to care and impacts on social and physical health. The described prevalence of

depression in India varies from 3% to 30% depending on the framework for understanding
depression and the instruments used for identification from (Ganguli, 2000; Poongothai, Pradeepa,

Ganesan, & Mohan, 2009) few people would disagree that there are crores of people in India
disabled by depressive symptoms who have little support and access to careregardless of whether
they are categorised as distressed, despairing or disordered(Tawar, Bhatia, & llankumaran, 2014).

(some of the challenges of community based care for people with mental distress (PWMD) in Low
Middle Income Countries (LMICs)include mental health's low ranking in a hierarchy of needs among
populations who don't have access to sufficient food, grossly under-resourced mental health
services (for example India has Just one psychologist for six lac people, and one psychiatrist for three
lac people) and low policy and programme and resource priority for mental health(Jacob, 2001;
World Health Organisation, 2011)"Jhe District Mental Health Plan (DMHP) launched in India in 1996,
has been imperfectly and incompletely implemented across the country (Jain & Jadhav, 2009;

Tripathy et al., 2010; van Ginneken, Jain, Patel, & Berridge, 2014). India's first mental health policy
was launched in October 2014 (Ministry of Health and Family Welfare, 2014)and will need
substantial resourcing to make it more than aspirational.
The Indian context also provides Onique opportunities. The vast huge majority of PWMD in India live
with and are cared for by family members, and people with severe and common mental disorders
are often well integrated in their communities with opportunity to participate in community social

and religious functions. PWMD find social sanction, initiate further help-seeking and find support
1 kaaren@eha-health.org

and healing in a supportive and non-threatening environment of some traditional healers and

shrines(Padmavati, Thara, & Corin, 2005; R Raguram, Venkateswaran, Ramakrishna, & Weiss,
2OO2).At the same time, most PWMD, particularly those with severe mental disorders have
significant experiences of social exclusion and live with significant stigma and

discrimination(Koschorke et al., 2014; Loganathan & Murthy, 2008; R. Raguram, Weiss,

Channabasavanna, & Devins, 1996).
The majority of community mental health projects in India have initially focussed on increasing

access to allopathic care with strategies such as providing mental health camps offering

pharmaceutical treatment and task-shifting to train community based lay health counsellors (V
Patel, Weiss, Chowdhury, & Naik, 2011)(Chatterjee, Leese, & Korschorke, 2011; V. Patel et al., 2008).

However this alone is not enough and increasinglythe importance of community based
rehabilitation, increasing the agency arid empowerment of PWMD and building skills in long term
resilience and employment are recognised(Drake et al., 2014; V Patel, 2014; Raja, Kippen,
Mannarath, & et al, 2008).
Emmanuel Hospital Association (www.eha-health.org)is one of the largest non-profit providers of

health services in North India, primarily working in the most deprived districts with 20 community
hospitals providing clinical services and over 40 community health projects. As a Christian

organisation weunderstand health comprising of physical, social and spiritual spheres. Our
framework for community health prioritises community participation and empowerment, andseeks

to address health determinants using a rights based approach(Community Health and Development
programme EHA, 2010) with an overarching vision of seeking community transformationj We have
been seeking to develop a coherent model of community mental health and in this paper I describe

the context and learnings we have encountered in four locations where we are implementing
community mental health programmes, and presentpossible models for moving forward.

Setting
The fourprojectlocations are in Sahranpur and Bijnor districtsin western Uttar Pradesh (UP),

Dehradun district, Uttarakhandand a fourth project in East Champaran district, Bihar, India. The
mental health programme started in 2010.EHA has one psychiatrist who is located at Herbertpur
Christian Hospital, in Dehradun district, Uttarakhand and works primarily in out-patient care but

supports two of the EHA community mental health programmes with fortnightly mental health

clinics in the community.
Western UP has been a recent flashpoint for communal violence with riots and protests in both 2013
and 2014. Saharanpur is a relatively poor district with 3.5 million people and a literacy rate of 70%.

Health indicators for the district are lower than national and UP state averages. Bijnor district has 3.6

million people and a literacy rate of 78%. Dehradun district has 3.4 million people and a literacy rate
of 84%. East Champaran has 5.1 million people with an average literacy rate of 55%. It is one of the
most deprived districts in lndia(Government of India, 2011).
The national District Mental Health Plan (DMHP) had not been implemented in any of these

locations. In the UP study districts, there were no psychologists, no government mental health
services and only one private psychiatrist. PWMD typically visit RMPs (local health practitioners who

have had no formal training) and traditional healers as well as distant private psychiatrists and

neurologists. In Dehradun district Selaqui State Mental Hospital offers inpatient and outpatient
services. There is no psychologist and there are multiple private psychiatrists. In East Champaran
district the nearest government provider is six hours train ride away in Gorakhpur, Uttar Pradesh.

3
Study areas are dominated by agricultural land dotted with large villages of 1000 - 8000 people,
with densely co-located houses. The majority of families own their house but work as labourers for

large land owners. Dehradun district has mixed populations of urban, semi-urban and rural in
roughly equal proportions. East Champaran district is largely comprised of rural agricultural land

worked by landless labourers.

Context analysis
The reality for families and PWMD is more overwhelming than quantitative data can convey. In all

our projects we spent the initial months seeking to understand the realities of life, health and illhealth for PWMD. This included baseline surveys of knowledge, attitudes and practices, a prevalence

survey of help-seeking, and depression, in-depth interviews with PWMD and caregivers and focus
group discussions. The reality of listening to the stories of many PWMD and caregivers in their
homes gave a deep sense of the abandonment and isolation which many PWMD and their family

members live with. Salient points that we have heard and observed (and that have hit us like a
hammer over the head) are listed below:

1.

Help-seeking efforts are monumental - PWMD and their families are making enormous
efforts to find care. Most of the families we visit spend high resources of time and money

seeking help. This includes travelling long distances and spending months at healing shrines,
as well as visiting RMPs (untrained informal care providers), bhagats (Hindu tradiational

healer),maulvi and jhaaduphoonk (Muslim traditional healer) as well as private psychiatrists
and neurologists and occasionally government health services also. Costs were very high

particularly for people with more severe mental disorders from any provider and many
people described how they'd sold land, and livestock and taken extortionate loans to pay for
treatment but many eventually had stopped treatment due to prohibitive costs.
o

2.

PWMD and their families are particularly vulnerable to the very worst of the Indian private

medical system. We read the outpatient cards and heard stories of many PWMD attending

private psychiatrists and neurologists who were required to undergo multiple expensive MRI

and CAT scans. Other PWMD also were required to get an EEG and abdominal ultrasound. In
the reviewed OPD cards there were a sub-text narratives of avarice, irrational care, kickbacks and unnecessary investigations which all too often characterise private medical

providers(Berger, 2014). Illustrating the irrational science and diagnostic tests required, we
recorded one MRI report: "There is a hyper-lucent area in the periventricular white matter
suggestive of weakness of the mind A repeat scan after one month of therapy is

recommended". Access to private care often means impoverishment.
3.

There is very little knowledge about mental illness. E.g post-partum psychosis may be
understood by some as contagious, by others as a 'drama' to avoid work. Many people do
not understand that many intrusive symptoms of mental illness and distress can be
alleviated and treated. Many children, young people and adults with mental distress or a

seizure disorder are regarded as having an evil spirit, or a curse and remain without access
to treatment or care.

4.

PWMD have a dominant experience of social exclusion whLh ranges from more subtle

distancing and negative judgements to verbal violence (public ridicule and taunting),
economic violence (disinheritance)and physical violence. We have written about experiences

of exclusion and inclusion in depth(Mathias, Kermode, San Sebastian, Korschorke, &

Goicolea, 2014)(forthcoming).

5.

PWMD have a hugely increased premature and preventable mortality. This includes young
people with untreated seizure disorders dying in accidents related to their disorder (e.g. the

seizure of a mason on a roof leading to a terminal head injury) as well as related to neglect

and lack of access to care (e.g. people with schizophrenia with treatable infections who were

not taken to access curative care).

6.

There are millions of people in North and rural India with essential no access to mental
health care. The sparse human resources for mental health described for India above are

actually even worse than stated in rural areas and in northern States e.g. in Uttar Pradesh

with over 200 million people there are 10 government psychiatrists (State nodal officer for

mental health, 2013). In our project area in Saharanpur, western Uttar Pradesh, the nearest
Government psychiatrist is four hours journey away in Delhi. In our project area in Bijnor,

PWMD from our project travel to the Government mental hospital in Bareilly, on a three
hour train journey.

Programme objectives and learnings
All four of our community mental health projects have a staff of 5 - 8 people and teams of
community workers/volunteers who are based in the communities they work among.Broadly shared
objectives are outlined below:

1.

Buildmental health/ resilience knowledge and skills among community members

2.
3.

Build knowledge and skills in mental health of ASHA, AWW and ANM government workers
Identify people with mental distress and offer both community based support and care, and
facilitate access to care (primarily through advocacy for provision of government services)

4.

Support PWMD to access relevant Government entitlements such as disability pensions and
also link to form Disabled People's Groups (DPGs) and Federations

5.

Advocate for access to primary mental health services and essential medicines for mental
disorders by Government services working towards community monitoring of health
services

6.

Describe and disseminate resources, learnings and models of care including development of
alternative cadres of mental health providers

All of the above has guided us to seek to develop contextualised responses to reduce stigma,
improve access to care (this includes community based work with PWMD and their families as

well as access to clinical services), increase knowledge and awareness and amplify the social
space to facilitate collective action for mental health by all members of a community. A
framework that identifies the importance of community mental health competency has been a
guide for developing our thinking (Campbell & Burgess, 2012). We have expanded upon this as
our working framework for the overall approaches we seek to use in working in community

mental health where the long-term goal is communities with mental health competence. This
model is schematically represented in Figure 1.

Table 1 - Overview of PWMD identified in past 18 months in EHA community mental health
projects
LOCATION

TOTAL
PWMD

NUMBER
CMD

NUMBER
SMD

NUMBER
EPILEPSY

SAHARANPUR, UP
BIJNOR, UP
DEHRADUN,
UTTARAKHAND
EASTCHAMPARAN,
BIHAR
TOTAL

228
1016
251

35
390
135

148
201
60

35
344
34

NUMBER
OTHER EG
INTELLECTUAL
IMPAIRMENT
13
81
22

103

56

47

1

0

1598

616

456

414

114

Key learnings
1.

In a context of almost non-existent mental health services advocacy was ineffective without
the voice of servjce users / PWMD to demand a right to care. We needed to provide mental

health services (clinical and community-based) to assure PWMD that there are steps that
can manage symptoms and bring healing. This in turn was critical to help build a group of

PWMD consumers who participate in advocacy efforts with government providers.

2.

Government services are stretched with very high out-patient loads, and are highly variably
in quality. Service provision is exclusively related to prescribing drugs ie there is no
availability of counselling/ CBT/ group therapy or psychotherapy. Polypharmacy is prevalent

and some government service providers primarily give subscriptions for drugs in outside
pharmacies passing the payment burden to service users.

3.

Addressing proximal and distal mental health determinants such as employment, stigma and

discrimination and social inclusion seems critical but much more difficult than providing
allopathic care

4.

Building capacity of project team and community members and developing resources to

5.

support this has been the largest commitment in time in the initial years
Building knowledge and awareness on mental health among community and health

providers, has lead to many community members self-identifying with mental distress and
requesting support and help.

6.

Even sub-optimal bio-medical care can make a difference to individual people and families.
For example, in our programme in Bijnor, UP, more than 150 people with severe mental

disorders have accessed care through the Bareilly Mental Hospital. At this service there are
an average of 200 people attending the outpatient department each day, staffed by one

psychiatrist and one medical officer. New patients get a 10 minute consultation and
returning patients get 1 to 3 minutes consultations (personal communication, SHARE project

staff, 2014). Even so, the treatment provided here means over 200 people with seizure

disorders have been able to return to school, employment and other responsibilities.
Similarly people significantly disabled with depression, anxiety have a much higher level of
function than previously.

EHA - Model of care for people with mental distress
We schematically represent our three step model of care in Figure 2 below.

Step One - All people with mental distress need support and capacity building to build their own
skills at remaining mentally well. Stress management, social skills and friendships, mindfulness,

gratefulness, problem solving and effective interpersonal communication skills are some of the skills
that can significantly increase mental health and resilience. They are critical for the long term
wellness of all people. We use the PanchKadam (Five Steps) programme that we have adapted from
a New Zealand Mental health foundation as one resource we use to build personal and community
mental health skills. We also have developed a 15 module manual titled "NaeDisha - building youth
resilience" which is available for free download in Hindi and English on the EHA website to build

resilience and personal mental health skills.
In addition to this some people with mental distress can benefit significantly through talking

therapies. In particular we have found that where one to one counselling and psychotherapy is a
back bone of western psychiatry, many PWMD in India, group therapy is more culturally acceptable
and effective INS REF. We are keen to explore options on the therapeutic potential of SHGs and
other community based organisations as they are not dependent on mental health professionals

who are in short supply across most of India.
Adding further to personal skills and talking therapies, for some PWMD, there is significant benefit

from short or long term use of psychotropic drugs. Ensuring that all PWMD have the opportunity to
access mental health services and specialists is also key for all of our programmes.

Figure 2 EHA Model of Care of people with mental distress

' Talking therapy - support
i group, therapeutic group,
counselling and CBT, IPT

I Wellness skills
1

Medicines - needed for
some people with common
mental disorders and most
people with severe mental
disorders. Part of this step is
acknowledging the power of
Dua and Dawa (Prayers and
Medicines) for many PWMD

| Self-care and agency
' 5 Kadam (steps)

A simple Five Step approach to Well-being developed in New ZealandfMental health foundation of

New Zealand, 2012) is one that we have adapted as a resource for building resiliency in Step one of

the model above. This uses five steps Give, Connect, Keep learning, Get active and Take Notice to
prompt actions for well-being. English and Hindi understandings of this are shown in Figures 3 and 4
below:

Figure 3 Five Steps to Wellbeing

Your time,
your words,
your presence

DO WHAT YOU CAN.
ENJOY WHAT you DO.
Move youR hood

EMBRACE HEW
EXPERIENCES,
SEE OPPORTUNITIES.
SURPRISE YOURSELF

TfllK&HSTEN,
BE THERE
feei (ONtaD

REMEMBER
THE SIMPLE
THINGS TRAT
GIVE YOU JOY

WINNING WAYS TO WELLBEING
INTRODUCE THESE FIVE SIMPLE STRATEGIES INTO TOUR LIFE AND YOU WILL FEEL THE BENEFITS.

Figure 4 PanchKadam (Hindi)

Summary
Working in community mental health in rural North India is both exciting and overwhelming. There is

huge capacity to bring healing and transformation for many thousands of PWMD and families who
are currently isolated without care or support. There are also significant risks of doing harm if we use

models of care that do not acknowledge the cultural context and promote mental health care

exclusively dependent on pharmacology and Western biomedicine. These models of care are
working drafts and continue to be developed iteratively. Documenting and writing about what we

are learning seems morally required in a context where there is very little written about effective
community based mental health programmes in North India. We journey on with small steps.

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