Fusing journalism and TB – telling the stories as they are

Written from my sick bed – After GHF2014 – a very personal account of patient centred healthcare

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This post is NOT about TB and yet is relevant for everyone who cares about leading a healthy, pain-free life.

I had the fortune to attend GHF 2014 in March in Geneva to present JATB and what we have done through it towards better care for people infected and affected by TB.  It was received well.  However, the reason for this post has nothing to do with my session there.  It has to do with a session I attended called ‘Integrated Care, Empowered People’.

On a deliciously cold morning in one of the world’s most beautiful cities, ensconced in a warm, beautifully appointed auditorium, I heard out speakers who spoke about patient-centred healthcare.  They were all passionate about the concept.  As I listened, it struck only a mild chord in me because I had only occasionally needed healthcare, albeit for minor self-limiting health issues such as cold or fever or stomach upsets. On that day, it seemed desirable, but not something that could make or break life.  That was till I returned to India and developed a health problem that changed my whole perspective of patient-centred healthcare.

While I will spare the reader graphic details of my health issue, suffice it to say I needed MINOR surgery for a painful anal fissure.  My doctor, who I have great regard for, assured me it would just need two days of rest, better eating habits and I would be on my feet in next to no time.

Today, more than two weeks after my surgery, lying in bed, alternating between periods of intense pain and fatigue from the pain, I listen to my continuously beeping phone. It reminds me that I have dozens of unreplied mails; I have not returned to work yet, and try as I will, I neither have the energy nor the will to do anything about it.  And the situation is because of an entirely avoidable mistake by the nursing staff at the hospital who did not handle my discharge in the patient-centred way that it should have.

The mistake was as minor as the surgery itself but it has cost me dearly in the kind of pain that I have had to suffer, the number of days that I as a person who loves my job, loves the energy that my life normally has, loves LIFE itself to the core, have lost, and the needless suffering it has caused to my family who have watched my agony helplessly, unable to do anything.  My recuperative period, which should have been mildly painful, has turned out to be a period filled with white-hot pain that has had me gasping and almost unconscious at times.  I am at most times a reserved, almost reclusive person, who does not show emotion easily. But pain has brought out the worst in me and has had me crying and screaming, leaving me wondering how little I have actually worked at training myself for adversity.

I thank Dr Slim Slama, Dr Sunoor Varma and the team at GHF who introduced the concept of patient-centred healthcare to me.  I also ask the nurse who caused this situation in my life:

1. Did she see me as a person or a body part?

2. Did she realise that not following doctor’s instructions to the letter could possibly lead to disaster?

3. What kind of rigour do hospitals train their staff with?  How many in the medical fraternity have heard of patient-centric care?

4. Am I just a statistic to the medical fraternity, or a person whose nerve endings can and do signal pain in a very violent way to my brain and drive it insane in that period?

5. How many like me?

6. I have voice and intend to use it in the future through JATB as well as other forums to advocate even for people who have MINOR health situations, but how many like me have voice?

7. Even as I write this, how many more are being sacrificed at the altar of healthcare facilities that are not patient-centred?

This is all the energy that I have for today.  But tomorrow is another day.  I know I will get well and I do hope that my voice will be stronger and the pain and suffering I have undergone will soon be just memories that give me more strength for better advocacy.

I have also kept all names, details and locations out of this post because it is not my intention to point an accusatory finger at any person or facility.  It is just to sound a gentle alarm in the medical fraternity that while I have the ability to talk about what has happened to me, there are scores, or more who suffer silently, unable to speak. Unless the medical fraternity listens to the voice of the patient, and goes beyond the body part, all efforts at better healthcare will come to nought.

Bharathi Ghanashyam

Written by JournalistsAgainstTB

July 3, 2014 at 11:21 am

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