‘She was desperate and scared, pleaded for help’

At 10 am the doors of the outpatient department OPD of the Tata Memorial Hospital Parel swing open A sea of people wait for their turn to get in but there is no scramble Some of them are fitted with nasal tubes others carry unseen battle scars Some of the patients head to the enquiry counter while others head straight to the men and women in royal green coatsApoorva Tiloda one of the young men being sought out by the patients is a Kevat Like the 19 others on the team he is on his feet for eight to 10 hours straight with not a minutersquos of peace Steadily patient after patient approaches him with files bulging with printouts of medical reportsApoorva Tiloda Snehal Mungekar and Neha DesaiTiloda is a 2019 graduate of the Kevat training programme that TMH runs in association with the Tata Institute of Social Sciences TISS since 2018 His background in pharmacy and passion for ldquoservicerdquo found a ready match in this oneyear diploma paramedical course in patient navigation in oncology An alumnus of the first batch of graduates Tiloda is a sort of veteran His batchmates and those who came after him have helped changes in assistance so dramatically that the Tata Memorial Centre TMC announced last week that it will launch a oneyear certificate Kevat course across all its nine hubshospitals in various Indian states including ACTREC Advanced Centre for Treatment Research and Education in Cancer TMCrsquos stateoftheart RampD wing in Kharghar Navi Mumbai For its Parel hub the most soughtafter it has launched an additional twoyear MSc course that is even more thorough via specialisations like community navigation breast oncology or palliative care along with a dissertation in itrsquos curriculumThis year will see another first The programme is all set to see its first international diplomaholders graduate On May 2 37 Indonesian Kevats will participate in a convocation ceremony making this initiative one of Indiarsquos first homegrown ealthcare management programmes to see an international collaborationSiddhant Shilwan a Kevat assistant at ACTREC Kharghar scans documents as patients eagerly await their turn Shilwan says he applied for the programme last year after experiencing the life of a caregiver when his father was ailing PicsKirti Surve ParadeThe decision to expand the course comes after TMHrsquos Parel headquarters saw a 444 per cent drop in the time taken for a patient to receive the first line of treatment after entering the premisesDr Vinit Samat medical superintendent TMH believes that a combination of the oneyear certificate programme and the twoyear MSc course will create a new legion of Kevats who are able to deal with the growing number of cancer patients approaching the institution from across the country TMH Parel receives 12 lakh patients annually according to latest estimates Siddhant Shilwan with his colleagues Ganesh Patil and Dilip Jaiswar in the Actrec OPD The three usually exchange notes on how to deal with challenging casesldquoWe need more Kevatsrdquo Samat tells midday ldquoThe current number is insufficient to handle patient inflow A few years down the line the ratio will be terribly skewedrdquo In February 2024 the Indian Cancer Congress ICC announced that 14 lakh new cancer cases had registered nationally in the year 2019Despite the pressure Tiloda whirs around the OPD managing to break into a smile when his eyes catch a familiar face A young girl in a wheelchair pushed by a man in his 40s goes past us the girl musters a look of recognition ldquoShe is 15 a patient of thyroid cancerrdquo Tiloda who handles head and neck cancer patients says ldquoWhen she was informed about the chemotherapy and radiation cycles she asked me if anyone would marry her She has developed extreme body dysmorphia as a result We are counselling her through itrdquoNishu Singh Goel Program Head TMCKevat and Dr Rajendra Badwe Professor Emeritus ExDirector Tata Memorial HospitalWe havenrsquot spotted despair on his face in all these hours Experience has hardened him In the first week of his joining work in 2018 he came across an oral cancer patient who was exactly his age ldquoThe doctor had informed them in detail about the diagnosis surgery chemo and radiotherapy But it always takes time for the news to set in He came out of the consultation and asked me what excatly does this meanrdquoTiloda repeated the information with patience and calm ldquoI kept talking even as he broke down I didnrsquot stop We wait for them to compose themselves but we must gently inform them of what the immediate future holds He wept incessantly even as his wife and toddler stood next to himrdquoThe counselling room is where the Kevats talk to patients preand post consultation with the doctor or clinician Most patients donrsquot comprehend the technicalities of the treatment or are too deep in shock to understand the way forward PicsShadab KhanTiloda allows us to accompany him to the counselling room in a corner of the OPD where patients receive preandpost consultation counselling A queue stands outside waiting for Tiloda to arrive His colleagues carry on checking documentation thatrsquos mandatory for the preconsult The likes of Tiloda will scan the documents to make sure all is in place before a patient meets a clinician for the first time One patient has brought along the biopsy report but not the sample He looks distressed with the oversight The team of Kevats consulted each other checked where the biopsy was done and decided to make a call to the diagnostic centreDr Neha Desai who has a Bachelor of Dental Surgery and graduated from the Kevat diploma programme in 2019 is revising with a patient the questions they need to ask the doctor ldquoMany a times when they exit the room and we ask what the doctor said about a specific detail they have no answer To cut down the back and forth we must give them detailed instructions from the word gordquoKevats Apoorva Tiloda extreme left and Neha Desai dealing with crowds outside the counselling centre Kevats also assist patients by coordinating between various departments at the hospitalIn some cases especially when patients face a language barrier Kevats accompany them to the consultationDesai and her colleague Snehal Mungekar are redirecting patients to specific departments The postconsultation session also includes helping patients sort out their finances ldquoWe inform them about government schemes they may be eligible for We must know how they can apply and whererdquo adds TilodaVinit Samat Yova Tri Yolanda and Dr Rikky Irawan Tulus Manuarang PurbaFor those who must return for further investigation Kevats help patients schedule appointments and counsel them on selfcare before going in for a specific test Itrsquos imperative to be on an empty stomach before a PET scan or radiology procedure for instanceWhat if they donrsquot return ldquoWe have a back office that calls them for updates and sounds us off on the progress of their course of treatment This helps us understand whether there is resistance to take up the treatment or notrdquo says Mungekar ldquoAccordingly we strategise to keep pursuing them to meet us again so that we may explain the benefits of availing treatmentrdquoDr Navin Khattry deputy director of ACTREC Kharghar feels that the presence of four Kevats and another four Kevat assistants has led to decrease in the number of drop out patients midtreatmentNone of this is easy And the grim nature of the job takes its toll But they all watch out for a moment of hope Desai recalls the time a patient from Odisha who she and Mungekar had helped returned after six months for a follow up ldquoShe was carrying a pudi small leaf parcel It was ashirwaad she said from a mandir back home She explained how it was special and she didnrsquot give it to just about anyone You need this sometimes a small indicator that you are doing some good in the worldrdquoIn 2005 Khargharrsquos sector 22 was considered secluded to visit after nightfall The news that TMC had opened a cancer hospital here was considered impractical by Navi Mumbaikars Today ACTREC has grown from a 50bed hospital to a 500bedder and is positioned to grow to 900 beds in the next two years A majority of ACTRECrsquos footfall comes from Ratnagiri and RaigadItrsquos where the most recent batch of the Kevat certificate course holders of 2023 have been deployed for eight months The day midday visited the city was celebrating Eid a public holiday and most patients had not turned up It was a relatively easier day for Siddhant Shilwan who was explaining paperwork in the counselling room attached to the blood cancer department We were requested to mask up because blood cancer patients are particularly susceptible to infectionShilwan who has a background in Commerce said he signed up for the Kevat programme after he had to turn caregiver for his ailing father throughout his second and third year of college ldquoI know how it is to be a caregiver go from pillar to post asking for the right information All the while you try to deal with the thought of losing a parentrdquo he says Shilwanrsquos father passed away soon after ldquoI see myself in every caregiver who comes here and my father in every patientrdquoHis colleague Dilip Jaiswar works in the solid tumour department He says the first time that he received affirmation for his decision to become patient navigator was when he was able to help a single mother with uterus cancer ldquoShe had two minor children She was alone and was lost Along with the fact that there was a language barrier she was too overwhelmed to understand the line of treatment one of which was that she needed blood immediatelyrdquo The blood bank had only one bottle for the group ldquoShe was desperate and scared She asked me for help I donated a bottle of my own blood I didnrsquot make much of it But when she was leaving with her children I realised what it meant to her I am where I need to berdquo says JaiswarGanesh Patil who is posted in the inpatient department has been helping a teenager with blood cancer for the last six months ldquoThe child did not speak at all He wouldnrsquot respond to the doctors or any of us These cases are especially concerning as we need to see the patient show interest in recoveryrdquo says Patil a Bcom graduate who switched fields because he says he was missing the passion in his previous job ldquoAfter months of counselling the child has begun to shake hands with us greet us and say good morning This for me has been one of the most rewarding momentsrdquo smiles PatilMitra Keluarga is an Indonesiabased hospital operator In an international collaboration the Kevat programme has been rechristened the Care and Patient Navigation CPN here with Dr Rikky Irawan Tulus Manuarang Purba a general practitioner helming itOne of the key issues Purba was facing was the dropout rate of patients in the middle of their treatment ldquoIt was close to 30 per cent A large number of patients were either not responding or not turning up for treatment on the said dayrdquo he tells midday over the phone from Jakarta This was odd because unlike India Indonesia offers national health insurance to all its citizens ldquoOne of the tools we implemented is the WhatsApp hotline number Patients send messages to the group and we respond during working hours or by the next day latest This has made them feel that their queries are addressed swiftly and they donrsquot have to bother coming physically to the hospital for minor clarificationsrdquo But he calls group or common counselling an original Kevat technique their biggest breakthrough By placing patients with a common category of cancer together during counselling they were able to find support and motivation ldquoWhen they saw other survivors they returned for follow up treatmentrdquo The dropout rate Purba says has come down five per cent in the last six monthsYova Tri Yolanda a clinical psychologist and graduate of the CPNKevat programme is working as navigator in RS Sardjito Hospital Jakarta ldquoAt first I wasnrsquot very sure how this programme would help me What it does is make you understand that other than helping with documents we use our skills to rid the patients of fear It empowers them to take control of their life and decisionsrdquo she says ldquoI was able to recently help a woman with uterus cancer take control of her treatment She was paralysed by the fear of dying and her children being orphaned I counseled her convinced her that she would not know until she tried It was satisfying when I saw her get discharged and go back homerdquoPurbarsquos toughest challenge came a few months ago when a colleague a nurse for over 20 years was diagnosed with cervical cancer ldquoAlthough she was a nurse it was difficult for her to accept that she had no treatment options After rigorous counselling we were able to have her understand that she could opt to stay home with her family and pass on with dignity We lost her a few months agordquo says Purba ldquoIt was my toughest task as CPN coordinator since the patient was a friend ldquoIrsquod ask her what kind of farewell party do you want A sad one or a happy goodbyerdquo Purba says that as navigator he tries to see life and death as two sides of existence ldquoWe know the value of life because of the presence of deathrdquo12LNo of patients who visit Tata Memorial Hospital Parel annually14LThe Indian Cancer Congress ICC in February 2024 stated that 14 lakh new cancer cases were registered nationally in the year 2019 The body estimates that this number will reach 20 lakh by 2020 Most cancers in India are primarily head and neck gastrointestinal cancer breast cancer and gynaecological cancers