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Patients find centre stage in competencies aimed to develop disability-inclusive compassionate care

Posted in General

For most people with disabilities, a visit to the doctor is usually a
nightmarish experience. Many say they are insensitively treated, or spoken to
in a manner that makes them feel awkward. In a worst case scenario, their
treatment is in jeopardy.

Prajith Jaipal, a disability rights activist from Kerala and
wheelchair user, says in his experience most doctors are unaware of the
various health complications that people on wheelchairs face.

“I have been to many hospitals in Kerala as well as outside India, and I
would say that 99% of doctors don’t know of the additional health risks
wheelchair users face”, says Jaipal. “There is little care and
consideration given and the problem starts at the stage where they study
medicine. They go directly into treating patients or doing surgeries, with no
awareness or training regarding disability”.

This lack of training manifests itself in many ways. “Whenever I take my mom
for her check-up, doctors presume I am the patient because I am in a
wheelchair”, says Shama Noorani Choudhary, an accessible
travel specialist with Enable Travels.

“When i took my mom for a knee surgery, the doctor was asking my mom what my
needs were. The other issue is that doctors never address you, but the person
with you. They assume that because you are in a wheelchair you are mentally
not up to the mark. There has to be an attitude change from the top down. The
medical fraternity must realize that people with disabilities have feelings
too”, adds Choudhary.

Experiences like these took centre stage at a focused group
organized by the University of Chicago and
the Medical Humanities Group of the University College
of Medical Sciences
in Delhi last week. The two are collaborating to
develop a consensus on the disability competencies that should
be acquired by health professionals during training.

The purpose is to define the standards for disability training
so that people with disabilities have access to better health care. An
absence that denied people with disabilities access to health care, a
fundamental right, points out Abha Khetarpal, a counsellor
for people with disabilities.

“Disability is such a wide and varied issue that it cannot be limited to
one or two medical conditions. Even two people with the same disability have
different needs. One may have problems with muscle power while another may
have functionality related needs. For that matter doctors are not even well
trained in how to give disability certificates in communicating with people
who have intellectual disorders. This is an implicit denial of the right to
health care”, says Khetarpal.

In this context, it is necessary that doctors are trained to ask the right
questions when they are treating a disabled patient, a perspective that is
missing in the medical training syllabus put out by the Medical
Council of India (MCI)

Even the new curriculum that was released by the MCI is not comprehensive
because there was no attempt to take into account the perspective of
doctors with disabilities while framing it, not even students who will be
using it going ahead. The MCI curriculum does not take the human rights
approach into consideration at all, nor the provisions of the RPWD Act
2016. That is why we decided to collaborate with the University of Chicago.
Dr Satendra Singh, Disability rights leader

The discussion highlighted these neglected voices, putting the experiences of
patients with disabilities in the foreground. What came out were emotional,
moving accounts of the indifference and apathy people are faced with at a
time when they need care and attention. Many of those who spoke out were
doctors with disabilities too.

Also present were experts with disabilities like deaf blindness who
demonstrated verbal and non-verbal techniques to communicate
with disabled patients and their caregivers.

All these accounts have been recorded on video and will be a key component of
the modules that will be prepared and shared. “These 18 hours of recording
are a goldmine”, adds Dr Singh. “There is so much information of the
discrimination faced, together with the voices of disability rights
organizations. We have prepared 27 sets of competencies which can be used
anywhere in the world.”

The next step will be to prepare modules for Indian medical
graduates, which will be based on experiential training. This is vital to
reduce disparities while training, so that the barriers people with
disabilities face while accessing clinical and preventive services reduce.


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