Patient Care with Heart at Right Place

Manesh Mathew, Founder Medallion, with Dr. Rohan Ramesh, MBBS, MD, Community Medicine at CIHSR

As a researcher in healthcare space, I have got several opportunities to closely interact with healthcare practitioners. Where corporate hospitals and commercialisation of the whole healthcare system has deeply compromised the patient care, there are doctors who care more about a human life rather than targets and high profits. These doctors are not trying to improve their hospital technology to attract more money rather their intention is to provide better care, their efforts are more in making sure that the patients are treated well.

I would like to share one such incidence during my visit to Christian Institute of Health Sciences and Research (CIHSR), Nagaland, where our team was supposed to go to nearby villages to understand technology requirements for NRHM workers and peripheral health centre. On the way, Dr. Rohan Ramesh, took a patient to drop to his house where he lives alone. He was severely affected by malnutrition and liver cirrhosis with sores all over his body. They came to know about this patient through a neighbour and immediately took the patient to the referral hospital where they took great care of the patient and brought him back to life. The patient had no family so community health department raised funds through the donation to treat him. And now, when he is better they are on their way to drop him back. The ambulance stopped and I was standing near the vehicle observing what is happening. I was taken aback when the doctor lifted the patient out of the ambulance with a bed-sheet. He was safely placed on his bed, neighbours were informed about his medications and dressing. They realized that the hut in which the patient is living is very dark and damp so they decided to open a window so that patient can get fresh air to breathe. He was very weak to get up on his own, so they made an arrangement so that he can hold the rope tied to the ceiling to get up from his bed.

I was observing all this from a distance and this episode provoked a lot of questions in my head. I started wondering what makes this young and dynamic doctor leave a lucrative job and stay in such remote location? What is driving him? Why is he not thinking of making big money? I was scared to ask such thought-provoking question but then I couldn’t stop myself and asked him about his journey. That was even more interesting, he was a very fun loving member of a rock band. After finishing his MBBS, he travelled to many cities performing with his band, enjoying all luxuries. Deep within his heart was yearning to serve the people, that’s when he decided to give up all and serve people.

It was an eye-opening experience for me, but then reality is that although they have the heart to serve and passion to follow, they need financial support to carry out their journey without many hurdles. Last time I met him in Bangalore, when he came to meet a few CSR heads to raise fund for telemedicine project. I salute these practitioners who sacrifice their lucrative salaries at corporate hospitals and serve people. Cheers and good wishes to the entire team from CIHSR for supporting the needy cause to the serve the people of Nagaland!

Hope Anchors the Soul

 

It was a usual day at work, and I was busy finishing an assignment which needed me to research on suicide trends in India and across the globe. While going through huge amount of literature available on this topic, I was stunned with the statistics! According to the latest report of National Crime Records Bureau (NCRB) number of suicide cases in the past decade have recorded an increase of 17.3% (1,33,623 in 2015 from 1,13,914 in 2005). There doesn’t seem to be any pattern, the age ranges from 13 to 35, both the genders are vulnerable. Suicides are happening in both rural and urban populations, and they are happening in developing as well as developed countries.

Studies indicate that suicides are associated with mental illness, which is not always true according to my understanding. Suicide cases are very frequently reported in premier institutes as well, where brilliant minds are forced to take such harsh step. Depression and fear are considered to be the driving force for this kind of a fatal act. Reasons may differ but underlining fact remains the same. A person loses hope; Hope to live a respectful life; Hope to restart; Hope to rebuild what is lost.

Those who are lucky reach counsellors and get timely help. But, there is a large population which succumbs in silence. If you look at play store in your smart phone you will find several applications which will claim to fight depression and help you come out of suicidal thoughts. Even Artificial Intelligence and Machine Learning is also intervening in this space, but what we are forgetting is the human touch. We are so lost in our world that we have become almost ignorant to people and situations around us. Many a times, kids are going through trauma and we miss to notice that. Rather we become harsh on them and judge them for being sensitive. Many a times, we see our neighbour is behaving unusual but we ignore thinking none of my business. If we slow down for a moment and look around we will find that we can actually reduce such instances by being sensitive and compassionate.

They may not ask for help, but that doesn’t mean that help isn’t wanted. People who take their lives don’t want to die—they just want to stop the pain. We can help by recognising the warning signs and taking them seriously. Signs can be as subtle as change in eating and sleeping habits or withdrawal from friends, family, and regular activities or they can be as alarming as seeking access to guns, pills, knives, or other objects that could be used in a suicide attempt.

Do not ignore them, a small act of compassion can save a precious life. Giving a patient hearing can be one of the best remedy, let the person unload despair and ventilate frustration. Listen without being judgemental, let the person know that you care. Confronting suicidal thoughts often help. Take help from a friend or counsellor if you feel you are unable to handle it on your own, but don’t leave the person alone in the situation. Martin Luther King, Jr. rightly said “Life’s most persistent and urgent question is, ‘What are you doing for others?”

Rare is no more RARE


Recently, during a business trip to Thiruvalla in Kerala, I visited an orphanage, which is a house of some 300 children. The kids were of different ages spanning from newborn to teenage. One thing was common among these children, they all were suffering from rare diseases. To my surprise caretaker was not even aware that these are genetic disorders and many of them can be cured or managed. We tried to explain her but she was resistant to accept it. Instead, they feel that these kids are supposedly cursed and that’s why families leave them in God’s hand. I am sure many of them die due to lack of timely medical help.

It is estimated that approximately 350 million people worldwide suffer from rare diseases out of which 70 million patients are from India. Many developed countries are far more prepared to deal with rare disease patients but the scenario in developing countries is very different. Expensive medical treatments, poor awareness and the absence of a national rare disease policy adds to the burden.


During my research at Strand Life Sciences, I came across Mr. Prassanna Shirol, founder of Organization For Rare Diseases India (ORDI), whose only daughter was suffering from Pompe disease. He was struggling to get vital medical support for her. During the course, he realized that there are many more patients suffering from such misery. That’s when he founded ORDI, which aims to create awareness for Rare disease patients. They organize various meetups and fund-raising events like Racefor7 to support the patients and family.


Last year, I got to meet another brave father, Mr. R. S. Anand, whose only son is fighting against Duchenne muscular dystrophy (DMD). DMD is a severe progressive X-linked muscular dystrophy of males marked by early childhood onset. It affects mainly male children and most of them become wheelchair dependent by age of 8. Due to lack of any support, he started connecting with other patient’s suffering with DMD. He founded Dystrophy Annihilation Research Trust [DART], India’s first research lab focusing on DMD.

Like any other lab, DART needs funds to support the research. So far it was a parent-funded organization, but that’s not enough. They are also organizing a few fund-raising activities, one such upcoming event is #runforthosewhocant on 24th September. 

I salute these real-life heroes and their undying spirit to fight for their children and at the same time helping many more parents. We also have a responsibility to support such mission. Each one of us can make a difference by standing for the cause and creating the awareness so that no more kids are left on the stairs of the orphanage. They also deserve a better and respectable life!

  1.  To take part in the “Run for those who cant” on 24th SEP 2017, please register.
  2. Help DART find the cure and spread awareness, please donate.