Sunday, September 29, 2013

Patient Advocacy: How I Became a Patient Advocate

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, 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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