How I Became a Patient Advocate
Prabhakar Rao
A father recalls the tragedy of the untimely death of his son -
and how this gave birth to JASCAP
AS far
back as I can remember, I’ve always volunteered to play an advocate to someone
or the other. Over the years, I’ve helped a fairly large number of young people
launch or advance their careers and this was done by being their advocate and
mentoring them.
But,
first things first. Let me introduce myself first. I am a textile technologist
from Bombay University and have spent over forty years in business and industry
in India and abroad. I started, like everyone else does, I suppose, at the
bottom of the pyramid and rose rather rapidly to senior and then chief
executive positions.
Many a
times, youngsters who had worked with me or came in contact with me requested
help in getting placements or promotions and I enjoyed playing the role of
their advocate and helping them succeed. In May 1996, my only son, 30-year-old
Satyajit, died of cancer in the United States where he was working as a
software engineer. I was 60 then and this tragic event shattered our life and
turned it topsy-turvy. I was then the chief executive of a textile company in
Mumbai.
While in
the US and performing the last rites of my son, I came across a fairly large
number of brochures, pamphlets and booklets on cancer in general and on
lymphoma; the cancer that took him from us. He must have sought that literature
from various cancer support organizations to help him cope with his cancer and
its subsequent treatment. Browsing through that literature during that trip to
the US, a germ of an idea took root in my mind. Upon our return to India, I
gave up my job and my wife Neera and I decided to transcend our grief into a
socially useful project to help cancer survivors in some meaningful way. We set
up a charitable trust to help cancer patients in Mumbai. That marked the birth
of “Jeet Association for Support to Cancer Patients” (JASCAP), a voluntary
organization dedicated to cancer patients, their families and friends.
Briefly, our objectives at JASCAP are:
To comfort and counsel cancer patients and their families and
instill in them the confidence, courage and determination to fight this
life-threatening disease, thus rendering their medical treatment more effective
To inform and educate cancer patients and their families about the
various treatment options; and their respective physical and emotional side
effects and how to cope with these
To help patients and their families do everything possible to
cooperate fully with the medical care team and thus assist themselves towards a
possible cure or to live life as comfortably as possible with this disease
To prepare and disseminate printed and audio-visual material
dealing with cancer and its after effects to better prepare cancer patients and
their families to face this disease and remove or alleviate fears, especially
those based on misconceptions and incomplete understanding of the medical
issues confronting them
To achieve some of these objectives, we have taken the following
initiatives:
Obtain and disseminate up-to-date and accurate information about
cancer, its causes and methods of treatment, medical as well as non-medical
To prepare, print, publish and circulate pamphlets, booklets,
slides, posters and other educational material, in English, Marathi, Hindi and
other Indian languages, in order to provide patients and their families with
accurate, scientific, medical and clinical information and knowledge about
cancer; the different methods of treatment, control and post-treatment care
plans for the patients
To provide guidance, help, counseling, support and comfort to patients
in various forms in order to pave the way for their rehabilitation into the
community
To enlist support of medical professionals, pharmaceutical
manufacturers, social workers, voluntary organizations, government
institutions, dispensaries, hospitals, medical centers; in India and abroad in
fulfilling these objectives of JASCAP
To collect funds by way of membership fees/donations as also
gifts, books, equipment and audio-visual communication/education aids for
patients and those around them, as well medicines for patients in need of these
supplies
To recruit social workers, nurses and volunteers from the medical
profession, who are interested in lending their support to JASCAP and
strengthen our activities with lectures, seminars and study classes.
65 11. How I Became a
Patient Advocate
To build strong linkages and partnerships with institutions and
other voluntary/ governmental organizations, hospitals, in India and abroad
that are working for similar causes in order to further the objectives of
JASCAP
To carry out public health activities such as supporting
anti-tobacco campaigns, in order to make our society cancer-free
Pledging
and pooling in my limited financial resources, we founded JASCAP. Friends and
well-wishers scoffed at the idea first, but seventeen years down the line, the
response from cancer-affected patients, the medical fraternity and the
voluntary sector has been overwhelming, and this has reinstated our faith in
JASCAP and the objectives that we set out to achieve.
Our first
big break came in 2001, when the Tata Memorial Hospital at Parel, Mumbai
offered to house us in the hospital premises and despite the space crunch they
faced, allowed us to set-up a small book counter where we could distribute
literature on cancer.
Initially,
all this literature was only available in English, but gradually over the
years, we have managed to have a bulk of it translated in regional languages,
namely Hindi, Marathi, Gujarati, Bengali, Kannada, Tamil and Malayalam. This,
we felt was important, as most patients at Tata Memorial land up from different
parts of the country. Since we could not afford the fees of professional
translators, we sought help from volunteers in crossing this major linguistic
barrier.
The cost
of printing was another big challenge confronting us, besides editing the raw
material, type-setting and proof-reading – but with God’s grace, help kept
pouring in from unexpected quarters and we managed to remain afloat. By fighting
to keep our costs low, we have been able to offer our booklets at extremely
nominal prices to needy patients and their families.
Since we
cannot order a huge print run – because our booklets have to be routinely
updated to keep pace with the new medical breakthroughs – we often struggle to
keep a tight leash on our costs, without sacrificing the value we bring to our
readers. We take inspiration from the millions of other Indians who are
excellent in getting the biggest bang for their buck!
Small
wonder that until 2012, JASCAP has distributed over 200,000 booklets. We also
offer video CDs and in 2011 we crossed another milestone in launching our
website www.jascap.org, from where our booklets can be downloaded
free-of-cost in different languages.
At times,
we also arrange financial assistance to poor cancer patients by putting them in
touch with various funding organizations that are doing a yeoman’s job in this
area. As a small unit, we are nimble and try and respond to patients’ needs
promptly. We also do one-on-one counseling with cancer patients and their
families.
We have
trained counselors amongst our staff and volunteers for this role. To be
honest, the role is more of a LISTENER than a COUNSELLOR, but we have figured
out that listening with empathy is what patients and their families require the
most during this difficult hour. In rare circumstances, we also arrange peer
and expert counseling for patients and their caregivers. The literature that we
distribute covers information-gaps in the following areas of interest:
Sources of financial assistance for needy cancer patients
Accommodation options available in Mumbai for patients coming from
different parts of the country
Location of free or inexpensive eateries for the accompanying
caregivers
Assistance in paper work relating to admission into Tata Memorial
Hospital
Navigating through the various services that Tata Memorial
Hospital offers
Emotional support avenues
Although
a lot has been achieved, we at JASCAP realize that a lot remains undone as
well. We would, for instance, like to set-up a patient helpline with a toll
free number. The helpline staff could provide information about:
Other hospitals in Mumbai that treat cancer patients
Consultants and oncologists in private practice
Diagnostic centers for running pathological tests for which there
is a long queue at Tata Memorial
Medical stores that deal exclusively in oncology drugs, provisions
and prostheses
Individuals and organizations offering financial assistance to
cancer patients
Affordable accommodation options
Blood banks and blood donors
Rehabilitation centers for after-care, once the treatment is over.
Organizations helping in gainful employment of cancer survivors
Hospices for terminally-ill patients
Dealers in medical and supportive equipment such as beds, walkers,
bedpans, oxygen cylinders and so on
The road is long. But, we at JASCAP are determined to soldier on.
The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.
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