Change ICU protocols for patients with NEURO-degenerative diseases like PSP,CBD,MSA,etc

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Today marks the 2nd death anniversary of my father, Mr. Pradeep Vaidya. He was one of those 5 in a million people who was diagnosed with Progressive Supranuclear Palsy, a rare neurological disorder, which is not just hardly heard of but even much less understood. In the 14 years of my father’s fight against PSP, we came across a lot many hospitals and people from the medical fraternity who had hardly heard of this disorder, which lead to many difficult situations for them as also for my father. PSP like many other Neuro-degenerative diseases ( like CBD, Parkinson’s, MSA, Alzheimer’s )lead to speech, swallowing, vision and mobility issues amongst others, making the patient coil into a personal shell. Also, depression and anxiety are an additional tag alongs. While dealing with all of these deteriorating difficulties, the patients are at high risk of aspiration, aspirational pneumonia and UTIs amongst other health issues that lead to breathing trouble . When approached to hospitals for better care and treatment during this episodes, due to their strict protocols, they insist on ICU for the patient, which for then means traumatic experience as they are left alone to  suffer in solitude around people who not only lack knowledge of their disorder but also fail to show the necessary patience and compassion needed to deal with such patients, leading to even more prolonged cases of depression and anxiety, sometimes to an irreversible extent, further leading to rapid deterioration of the patient.

I write this long petition message, with the hope that it will help everybody out there who like me never understood how difficult living with such rare diseases can be, until we come across a sufferer up close. In my case, I learnt about it only after my father’s diagnosis. I don’t blame the hospitals or the medical fraternity for following the protocols of intensive care. Had they known better, I am sure a change would have taken place. It is the rarity of these diseases and the lack of awareness that leads to such unacceptable treatment policies. But now, as a tribute to my dad’s struggle with PSP, and with the hope of spreading awareness about these rare neurological disorders, I pray that the hospitals would make special exceptions for such patients, allowing them a normal stay in a private room where they are not left alone to deal with their unspeakable issues instead of admitting them in an uncomfortable environment of the ICU making them anxious and conscious because of their condition, while they continue to get the continuous intensive care treatment. I know it might be expensive and a difficult change to make but then isn’t it the main motive of the healthcare system to give optimum care and comfort to its patient especially the ones who are terminally ill ? Then why not provide the comfort required by these patients by letting them have their caregivers and family around 24/7 without being denied the necessary intensive care facilities. Why do the patients and their caregivers need to make a choice between good care v/s comfortable care and why not make an exception for them and give these patients a chance to have an ICU experience with the necessary comfort required for the recovery from the respiratory and other life threatening episodes that they face while they continue to live with these dreadful diseases.

I hope after reading my father’s ordeal, I would get the required support to get the medical and health care system across India and throughout the world to view the patients with neurological disorders in a different light, and give them special privileges with the necessary ICU facilities. 

Thank you