The world is battling a common foe at the moment, the novel coronavirus. Millions of people have been infected, and while many have recovered, the accounts of their recovery, in terms of the quality of care they received, have been shocking but all too familiar to many tuberculosis survivors like me.
It took six months, a lot of pain and several doctors just to get my TB diagnosis correct. Even as a doctor I did not often know how to navigate the health system or how to access the best quality TB care. I was forced to ask: Does the health system know best? Does it provide us the care we need?
Today, as a survivor of extensively drug-resistant TB, I believe that patients are best capable of accurately defining and evaluating the quality of care. Why? Because an infectious disease – be it Covid-19, TB or even HIV – is not just a physical ailment but also a mental and social one. In this regard, we know the quality of care we need. Not only is the current care ecosystem highly medicalised, but it is also restricted to the right diagnosis and treatment. No one asks or considers what patients go through when fighting an infectious disease and what our care needs are.
This is why we hear news of patients running away from facilities or some ending their lives even though infected with a virus from which you can recover. We forget people have anxiety and fears.
Access to information
Quality care would mean looking at a person as a person first, rather than as just a patient who simply needs to be diagnosed and prescribed medicines. A person who is in mental, emotional and physical turmoil, whose life is going to be deeply impacted by every decision made by the system. Simple things like taking the time and listening to their concerns without dismissing them can be the most important thing to do. Also crucial is understanding the social, economic, cultural and gender contexts in which the person fights their disease.
Ascertaining the difficulties faced by this person to get access to the information, tests, reports and support can help build a more person-centric system. This is particularly relevant in the current Covid-19 crisis. Allowing more time for counselling, and helping the patient cope with the mental and emotional consequences of the disease – as also adverse drug reactions – is critical. Along with this, it is critical to provide the required high-quality accurate diagnostics and drugs, especially newer ones.
While doctors are busy diagnosing and treating patients, the system never assesses how navigating it is excruciating for the patients. They do not have a single point of contact, nor do they have easier ways to gain access to reliable information, when required. The current system does not look at our realities as a person. I might have lost a job, I might not have enough nutrition, which makes or breaks my treatment. I may have been isolated from my friends, socially disregarded and ostracised.
The system, however, sees me as a case, a number, a statistic. It only provides me with a diagnosis and hands me my pills. It doesn’t support me, it monitors me to ensure that I have taken my medication.
Here is what good care should look like beyond diagnosis and treatment. Treating patients as people, with dignity and confidentiality, should be the first basic change. Improving efficiency, not only by providing people access to the latest diagnostics and drugs, but also respecting their time in healthcare facilities, is another. Good care also needs new and more flexible forms of service delivery, increased private sector engagement in disease management and care. A key aspect is patient education and information programmes in local languages.
Care also needs to engage the wider community. In the absence of support from the immediate community, patients may feel further isolated from the rest of the world, thus aggravating the stigma and mental health conditions. In the case of Covid-19, this is very relevant as communities can stigmatise and ostracise, affecting diagnosis and treatment.
Good care comes with personnel who are sensitive and emphatic. Sadly, today, doctors and healthcare providers on the frontlines against Covid-19 are having to face stigma, and the impact of it on their mental health may be going unnoticed.
We need to build the capacity of healthcare providers to provide realistic care that addresses issues of class, caste, gender, especially marginalised gender identities. Finally, we need systems of feedback and information collection for government and private doctors, so as to ensure long-term accountability and continuous improvement.
We are far off from the realities that a person faces as a patient. We must go beyond the medical aspect of a patient’s life and cater to their emotional, mental, social and economic needs, in this time of distress. This is easier said than done in a crisis like this, but it’s something we must strive for. As a TB survivor, I think it is the one thing we must work to ensure in the times of Covid-19.
Dr Saurabh Rane is a development professional, runner, mountaineer and XDR TB Survivor who is an advocate with Survivors Against TB, a community based movement that is led by TB survivors, experts and advocates who are work on TB and other co-morbidities.
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