Health  India Project #20786

Care beyond cure for Cancer Patients in Hyderabad

by PAIN RELIEF AND PALLIATIVE CARE SOCIETY Vetted since 2015 Site Visit Verified
1st Palliative care centre in the community
1st Palliative care centre in the community

At the outset, on behalf of Pain Relief and Palliative Care Society, kindly accept our heartfelt gratitude for extending support your invaluable support to our activities. 

COMMUNITY OUTREACH PROGRAM- The Chevella Mandal Community Based Palliative Care Program

Most chronically ill people prefer to spend most of their time at home and they are in desperate need of accessible medical care to help them cope with chronic and life limiting illness. An integrated and well-designed community based palliative care program is the only realistic model for achieving significant coverage and continuity of services for the terminally ill. We provide continuity of care by a group of dedicated volunteers in Chevella Mandal is located in the Ranga Reddy district of Andhra Pradesh. Regular visits by a team of palliative care physicians, nurses and physiotherapists extend care beyond the hospital setting.

For the first time in the country and the State, health authorities started taking concrete measures to decentralise and provide palliative care facilities in districts. In this direction, a few days ago, the State government launched a five-bed palliative care facility at the Govt Area Hospital in Chevella, Rangareddy district, to look after terminally ill patients. It was inaugurated by Hon'ble Minister Sri. Laxma Reddy, Dept of Health & Family Welfare on 13th October 2017.  

Seven more similar facilities will be set up before March, 2019, in various parts of the Telangana State This is for the first time that authorities here have managed to tap into the financial funding, which is available through National Programme for Palliative Care (NPPC).

Keeping in mind the difficulties that such patients have to face, authorities are collaborating with Pain Relief and Palliative Care Society (PRPCS) to start 10-bed palliative care facilities in Area Hospitals across the State.As far as public health institutions are concerned in Hyderabad, so far the palliative care for both the Telugu-speaking States is confined to MNJ Institute of Oncology & Regional Cancer Centre.  End-stage cancer patients from TS and AP have to come to MNJ Cancer Hospital to access palliative care facilities and get opioid medications like morphine, fentanyl and methadone. 

Palliative care facility at Chevella, which is managed by PRPCS, will provide in-patient, daycare and home care services to all 52 villages of Chevella mandal in Rangareddy district through an outreach programme.

“This is for the first time in the country that such treatment facilities are available for patients in villages. There are a lot of challenges but things are changing rapidly because the Centre and States have started acknowledging palliative care as a big issue,”

Other on Activities of Pain Relief and Palliative Care Society 

HOME BASED PALLIATIVE CARE PROGRAM- Supporting Patients and Families Where They Want to Be

The “Life at Your Doorstep” program provides a comprehensive home care program, 24 hour/7 days a week to patients and families struggling with advanced and terminal illness in the city of Hyderabad and Secunderabad. This program is the only home based palliative service in the entire city of Hyderabad - a city of 12 million people. The dedicated home care team not only attends to physical problems such as severe pain, breathlessness, malignant wounds, and confusion, but provides skilled psychosocial and spiritual support. Educating and preparing the family for expected changes at the end of life is another key role of the trained team.

Palliative Care for Children 

MNJ Institute of Oncology has a unique pain relief and pediatric palliative care program for the special needs of the children which is one of its kind in India supported by Pain Relief and Palliative Care Society. We support children with cancer and their families in their battle to overcome the illness by providing the emotional support, counseling, ‘food for survival’, travelling expenses, special school for children, rehabilitation and recreational activities.

 KUMUDINI DEVI HOSPICE AND PALLIATIVE CARE CENTRE- Living well and dying better

We have a full-fledged Hospice. It is a 24 bedded in-patient facility.  This hospice is provides a state of the art care for people living with advanced life-limiting illnesses such as cancer and other chronic diseases.

 In the hospice, palliative care is being provided free of cost to adults and children. At a conservative estimate, the institute is providing direct palliative care to 1000 inpatients per year, i.e. those who need inpatient care for difficult pain and other symptom management and an end – of-life-care. This centre is one of the training centers and research center for palliative care in India.

Kindly appreciate that any attempt to objectively quantify the work we do, namely providing palliative and end of life care to terminally ill patients is a difficult process as there is no measure what so ever as to how well a patient dies.

We shall soon share the annual report of PRPCS. 

Awareness camp in the villages
Awareness camp in the villages
Home visit
Home visit
Patient care
Patient care
Play therapy for children with cancer
Play therapy for children with cancer
Inauguration- 1st Palliative care centre, Chevella
Inauguration- 1st Palliative care centre, Chevella

Links:

Caregivers meeting at Hospice
Caregivers meeting at Hospice

Pain Relief and Palliative Care Society's goal is to provide palliative and end of life care to patients suffering from end stages of cancer and similar life limiting diseases by efficient running of our 24 bed hospice, a home based palliative care program in the city of Hyderabad and environs, a dedicated pediatric palliativ care program and the community outreach program in the rural setup. We have succeeded in our endeavor.  On an average about 65 patients per month are being admitted and treated in the hospice. On any given day 200 live patients are being enrolled in home care. Pediatric palliative care program caters to about 15-20 children with cancer at MNJ Governmnet cancer hosptial. We are catering to 190 patients with variuos incurable diseases in the community by visiting them thrice a week by the palliative care team.

Some of your successes and challenges

Palliative care and end of life care is one of the most challenging fields in medical science. Unlike normal medical treatment provided in various facilities where the treatment is given with a hope of curing the ailment, palliative care is provided for those patients for whom there is no further curative treatment. It is extremely difficult to quantify and measure the outcome of such care. The philosophy of palliative care, centers around providing a holistic concept of care which also varies from patient to patient depending on various factors like progression of disease, literacy level, socio-economic conditions, family dynamics etc and includes psychosocial support, rehabilitation along with medical care.

Our team consisting of trained doctors, nurses, social workers, counselors and other staff have, over the years, mastered the technique of breaking through the barriers of the patients and their caregivers and helping them to cope with the disease and consequences there on at various palliative care delivery. The successes can best me measured by the feedback which we receive from the care givers and the patients.

An example that best illustrates the success of your program(s) and services.

 There are stories- a plenty- which poignantly describe the kind of service provided by our Hospice. One such story is:

 An emaciated female aged about 40 years was brought to the Government Cancer Hospital, Hyderabad and abandoned in the premises. The patient who was semi-clad with bones sticking out and half conscious was referred to our hospice for treatment and care. She was transported in our ambulance to the hospice where the doctor and nurses washed and cleaned her, including removal of maggots from her wound around the breast.  She was properly clothed and fed. It appeared that, she was an advanced stage cancer patient (of the breast) who was deprived of  proper treatment and neglected by her family. After a week of loving care, proper diet and medical treatment, the patient recovered from her traumatic condition and was able to provide details of her family.  Our staff then traced out the family and obtained an affidavit from them which authorized us to look after till the end and also perform the funeral rights in the event of her death. She spent about two months in our hospice where she was given quality end of life care and finally passed of peacefully, without pain, and most importantly in dignity. Her funeral rights were also performed by our hospice staff, again, with full respect and dignity to the departed soul.

This story exemplifies the kind of service we are provide for the poor populace who cannot afford to get quality palliative and end of life care under the prevalent health care system.

Abandoned patient
Abandoned patient

Links:

Adoloscent patient in Hospice
Adoloscent patient in Hospice

PAIN RELIEF AND PALLIATIVE CARE SOCIETY

ANNUAL REPORT 2016-17

It is said that a long journey begins with a small step. The journey which started with the first step in June 2007 has indeed come a very long way. From very humble beginnings of supporting the Department of Pain & Palliative care in MNJ Institute of Oncology & Regional Cancer Centre, Pain Relief and Palliative Care Society (PRPCS) is today running four full-fledged palliative care programs catering to patients suffering from life limiting diseases like advanced stages of cancer and providing quality end of life care. The society provides all its services entirely free of cost without charging a penny which is nothing short of a miracle unfolding in front of our eyes! 

Activities Report

Kumudini Devi Hospice, Kukatpally

The year saw considerable upgrading of this 24 bed facility. The open verandah’s and pathways were covered and the flooring was upgraded both inside and outside the premises. The entire premises were colored with a pleasing color scheme providing a homely atmosphere for the patients. A full-fledged trained palliative care doctor, a nursing specialist in palliative care, a senior counselor/ social worker and a qualified physiotherapist have been added to the work force. Each shift is manned with by a doctor, 2 nurses and 2 ayammas. In addition we have also trained and recruited two nursing aides to assist the patients. The small Maruti 5 seater ambulance has been replaced with a large 9 seater Tata Winger ambulance for shuttling of patients between the hospital and hospice and transporting patient’s bodies in the event of death to their respective homes. Hospice has cared for 368 male patients, 323 femlae patients and 57 children. 

Most of the patients are referred to the hospice from the out-patient service of Department of Pain & Palliative Medicine of MNJ Institute of Oncology, while a few come from other corporate hospitals after reading about us on social media. Holistic care is being provided at the hospice which includes medical care, counseling support, food for the patients and their care givers, recreational, rehabilitation facilities and lastly transportation facilities for the dead body in the event of death. An atmosphere of total serenity has been created to ensure that the last days of our patients are spent comfortably and peacefully without pain and most importantly in dignity

Home based Palliative Care, “Life At Your Doorstep”

This is a unique program where our team consisting of a doctor, a nurse and a counselor visit the houses of patients and provide palliative care at their doorsteps. We have four vans covering the four corners of Hyderabad city and outskirts up to a radius of 30 kms. This program essentially caters to patients who live in and around Hyderabad and wish to remain at their homes. However, whenever the condition of the patient deteriorates requiring round the clock care, our home care teams move such patients to the hospice. At any given point of time there are about 160-180 patients distributed between the four vans. The program consists of providing medical care, supportive care, rehabilitation, counseling and occasionally even food for survival to our patients. Home care has seen 417 new patients and 2348 review visits under life at your home care. 

Community based Palliative Care in Chevella Mandal

This is yet another unique program wherein palliative care/ end of life care are being provided in an entirely rural setup. Patients living with life limiting illnesses in a cluster of 30 villages located about 70-75 kms from Hyderabad are provided care. The community program caters to end stage cancer patients and also to patients suffering from wide range of life-limiting diseases like Paralysis, Stroke, Quadriplegia, Renal Failure, Juvenile Diabetes, Cerebral Palsy, Muscular Dystrophy etc.  There are two full time village coordinators from the local community who work on our behalf in the villages. Their role includes identifying patients needing palliative care after a meticulous house to house survey, ensuring continuous follow up, creating community awareness and goodwill in the community. Once identified, such patients are visited at regular intervals by our team of doctors, nurses and physiotherapist who provide the necessary care and guidance. Given the taboos in a typical rural setup, most of these patients are in a state of severe neglect and hence need extensive psychosocial support for both the patient and the care givers. The entire treatment and care including medicines is given free of cost. Other aspects of rehabilitation support like providing nutritional support, providing food for survival, providing calipers for children who are physically handicapped, providing care givers for abandoned patients are also an integral part of this rural program.

Pediatric Palliative Care Program (0-18 years)

Pediatric Palliative Care Program in MNJ Institute of Oncology & Regional Cancer Centre and supported by PRPCS is unique and one of its kind in India. The pediatric palliative care team consists of dedicated palliative care specialist, senior pediatric palliative care nurse, a social worker and other supporting team consisting of play therapists, physiotherapists, occupational therapists and volunteers. Every effort is made to keep the child pain free and to incorporate palliative care into the treatment of the child right from the time of diagnosis. For such of those patients whose treatment has ended, the program provides palliative support to the patients and family members at their homes till the end and extending to bereavement support. Dealing with young children with cancer is a huge challenge and requires specialized skills and training. Our program has cared for 381 new children with cancer and 2763 reveiew patietns with cancer. 

The above statistics does not tell our whole story. Unlike conventional medical care where success is measured by the percentage of patients getting cured, palliative care is a field where it is very difficult to assess and measure outcomes.  The objective of our programs is to ensure a peaceful and dignified death to end stage cancer patients by providing them with state of the art palliative care. A measure of index of the successful implementation of the programs is the feedback which we receive from the care givers of the patients who have experienced the care and treatment which we have provided for their loved ones in the last stages of their life. We therefore encourage all our patients and their caregivers to give a constant feedback which is evaluated by us. 

Our finances:

The cost incurred for running each of the above programs in FY2016-17 is as under:

  1. Kumudini Devi Hospice                               Rs. 63,70,000
  2. Home Care Program (4 vans)                      Rs. 24,37,000
  3. Community Outreach Program                    Rs. 6,66,000
  4. Pediatric Palliative Care program                 Rs. 6,71,000

Total                                                                   Rs. 101, 44,000

The society employees a total staff of 44 members consisting of Doctors, Nurses, Physiotherapist, Social Workers/Counselors, Drivers, Cooks, Ayammas, Security guard etc working across the different programs. Salaries account for about 70% of the expenditure followed by medicines, petrol, food and utilities like electricity, water, waste disposal, laundry.

As already mentioned our programs are probably among the few full-fledged palliative care/end of life care programs offered entirely free of cost. We do not charge even a penny for our services and hence are totally dependent on mobilizing donations, grants to meet the expenditure.

We are indebted to our partners, major donors and other individual donors who have consistently supported us. 

Our Partners

Two Worlds Cancer Collaboration-Canada

Roshini Trust

Sivananda Rehabilitation Home

Hyderabad Pain and Palliative Care Trust

Major Donors

Value Labs Foundation

Ocean Sparkle

Karvy Group

Nvidia Foundation

Infor India

Narandas Lakhani Estate

Family of Late Smt. Lalitha Kumari

And numerous other individual donors both big

As with all charitable institutions we recognize the need to constantly look for new donors and sponsors. In order to become totally self reliant we are in the process of building up a reserve fund to dip into whenever the need arises in future.  

Upcoming Project

We are very pleased to state that one of our nursing aides working in the hospice who hails from Chevella village has donated a piece of land measuring 150 square yards to PRPCS for building of a small 6 bed hospice. We hope to complete this project during the current year and establish the hospice which will be among the first few rural hospices in the country and amenable for replicating in other similar rural setup’s across the country.

Thank you!!

Art and craft work for kids in peads ward
Art and craft work for kids in peads ward
Care givers meeting in Hospice
Care givers meeting in Hospice
Doctor visit in Community program
Doctor visit in Community program
Home visit for abandoned patient
Home visit for abandoned patient
Kids visit to zoo as last wish
Kids visit to zoo as last wish
Memorial Day in Hospice
Memorial Day in Hospice
Physio visit in Chevella
Physio visit in Chevella
Pyschosocial support in Home care
Pyschosocial support in Home care
Story telling
Story telling
Renovated relaxation area in Hospice
Renovated relaxation area in Hospice
Patient getting his last haircut done at Hospice
Patient getting his last haircut done at Hospice

Community Outreach Program in Chevella Mandal, RangaReddy District, Telangana State

Waiting for the exit visa

The small (8 by 8 feet) room has a broken cot, an old television, a few utensils, and an Eastern style toilet.

This is the world of M. Arjun.

Arjun is awake at 8a.m., but he waits, his body resting on its side; he waits for someone from the neighbourhood to come over and set it upright. Once somebody sits him up on the floor, Arjun remains sitting in that same position all day, his back straight and arms and legs half bent in front of his torso, watching television. He cannot flip the channels. If anyone passes by, he calls out to them but sometimes he is stuck watching the same channel all day. This is his day, every day.

Today, he is watching a Telugu news channel. We ask him if he wants it to be changed.

“I am following the developments in the Sasikala story,” he says. “It looks like Palanisami will become chief minister. I am waiting to see what happens in Tamil Nadu.”

To me, Arjun’s life is a life of waiting.

He used to work as a driver. He had a wife. Three years ago, at 32, he developed weakness in his legs and was diagnosed with a rare and incurable condition called limb girdle muscular dystrophy. Doctors told him it would spread to his arms as well.

Soon, everything changed, his life changed. He lost his job. His wife left him a month later. Today he is almost a quadriplegic. The horror is that his mind is unaffected by the disease, making his life a waking nightmare. He has had to watch his body slowly slip into disuse.

“There is no strength in my legs and left arm. But there is still some strength in my right arm. I can’t lift it, but I can press down with my fingers.”

He demonstrates this by pushing buttons on the mobile phone lying in front of him. A call goes to our physiotherapist, Ashok, who is standing nearby. We laugh. Ashok has been seeing him for two years as part of our palliative care rural outreach program.

We are in Antharam village, about 50 kilometres from our base in Hyderabad. Once a week our team (a doctor, nurse, physiotherapist, and counsellor) visits one of the 30 villages in Chevella Mandal that falls under our program. We see patients in the community with cancer, stroke, heart disease, and other diseases that are life-limiting or terminal and we try to improve their quality of life by providing care for their physical, mental, social, and spiritual suffering.

Arjun has developed severe pain in his legs in the past one month and so we have started him on morphine. We have identified and trained a 24-year-old man from the village to visit Arjun every day to help with his care taking, feeding, personal hygiene and other routine chores. We have raised funds to offer the caretaker a small monthly pay for his service.

“Now I can call Ashok,” he says. “But one day this power in my right hand will also go. Then nothing will be left. I used to be able to straighten myself if I leaned forward or sideways. But now if I lean too far I can’t get back up on my own.”

“How do you keep the phone for charging?” I asked.

“The man who comes to take care of me keeps it for charging at night. In the morning he keeps the charged phone near me.”

“Is he coming regularly?”

“Yes, he comes once in the morning to bathe me and give me food and water. And then he comes once more in the evening.”

“Do you want some water now?”

“No, I don’t drink water in between. It will be difficult to go to the toilet. I drink one litre in the morning and one litre at night.”

Arjun cannot take his medicines on his own either. So we only prescribe medication that needs to be taken twice a day. I explain the medication and dosage to Arjun’s helper. He is a graduate and hopes to get into a post graduate program soon. I tell him he is doing a great service by taking care of Arjun. He smiles.

If it weren’t for him, it’s hard to imagine how Arjun would get by.

Oddly, Arjun’s parents live nearby, but they aren’t in talking terms with him. Apparently, Arjun had lived a brash and careless life in his youth and didn’t pay heed to any of his relatives. He regrets it today.

Our counsellor has been sitting on the ground next to him all this while. We provide counselling and spend an hour during every visit just listening to him.

It is time for us to move on. We tell Arjun that we will see him again next month.

As we leave, I think of the three other patients we still have to visit. I think of getting back to Hyderabad, and of the meetings with the paediatric palliative care team.

Then I look back at Arjun, who is still sitting on the floor, his back straight and his arms and legs half bent in front of him. It is almost a meditative posture. He will be waiting in that room every single day of his life ahead… waiting… and waiting… and waiting.

Kumudini Devi Hospice and Palliative Care Centre, Kukatpally, Hyderabad, Telanagana State 

Kumudini Devi Hospice is a full-fledged 24 bedded in-patient facility offering palliative/ end of life care to patients suffering from terminal illnesses like cancer. This facility is run by a charitable registered society, the Pain Relief and Palliative Care Society, Hyderabad. The entire care is provided free of cost which include medical care,medicines, recreation and rehabilitation and food for patients and their care givers, transportation facilities for shuttling the patients between the hospice and the tertiary care centre namely MNJ Government Regional Cancer Centre and transportation of dead bodies from the hospice to their respective homes in the district towns. A dedicated team of trained staff consisting of three doctors, eight nurses, 11 attendants/ cooks, one social worker, 1 physiotherapist and other supporting staff are available 24/7 to provide care and support to such patients. There is a dedicated facility to provide care to children with advanced cancer and their families. 

Pain Relief and Palliative Care Society has cared for 381 new kids and 2763 review childeren with cancer as a part of dedicated pediatric palliative care program in the year 2016.

At the Kumudini Devi Hospice we have admitted and cared for 348 Female, 326 Male and 62 children with advanced cancer in the year 2016 and more than 50% of our patients passed away peacefully and comfortably where we provided free transportaiton of the dead bodies to their respective homes free of cost. 

In the Home based palliative care program, Life at your Door Step we have seen 417 new patients and 2438 review patients depending upon their priority in the year 2016 and keeping in view the increase in number of patients who need palliative and end of life care in the home setting, we have started 4th home care van from 1st February 2017. With this we are also trying to provide continuity of care to our patients abd trying to increase number of visits to provide quality and comnfort care. 

We look forward for your continued support in our endeavor to provide palliative care and end of life care to terminally ill patients and belonging to the poorer sections of our society. 

Patient taken out for sunlight in Hospice premises
Patient taken out for sunlight in Hospice premises
Doctor with patient at hospice
Doctor with patient at hospice
Patient as kid on the swing at hospice
Patient as kid on the swing at hospice
Kids outing to Golkonda Fort on weekend with team
Kids outing to Golkonda Fort on weekend with team
Psycho social support at Home care
Psycho social support at Home care
Child
Child's last wish to become police officer

Links:

Community outreach program
Community outreach program

Report

Activities of Pain Relief and Palliative Care Society,

Hyderabad

Submitted by: Dr. Gayatri Palat

Kumudini Devi Hospice & Palliative Care Centre

This is a story of one of the patients who was identified and admitted to our hospice for end of life care.

Mrs. Susheela was 50 years old. She was married at a very young age. She has one daughter. The day she was diagnosed with cancer, husband thought she was no more useful for his pleasure and left her and married another lady. Susheela used to work in a hospital as Aaya and bought up her daughter. Her daughter got married. Unfortunately her daughter was attacked by seizures at the time of her delivery, both the baby and her daughter were no more to her and Susheela has become all alone in her life. It took a couple of months for Susheela to come out of these situations.  As all this were not enough she was diagnosed with cancer cervix. She used to come to the hospital all alone for treatment. One or two times her sister accompanied her to the hospital and later she was abandoned. Doctors tried their best to cure her disease but due to her aggressive disease Susheela’s general condition started deteriorating day by day and she was not fit to undergo further treatment. She was completely transferred to pain & palliative care for end of life care. The same day we treated for her pain and other symptoms and shifted her to the hospice. She was admitted and the staff in the hospice tried to provide the best palliative and supportive therapy. In the initial days she was moving around in the hospice and later she developed Lymphedema in both the lower limbs and has become for her to move or even get up from the bed and few days later she has become totally bed bound. When Susheela was in the hospice her sister came to see her only once and didn’t even bother to take care of her. When her sister came and Susheela was conscious we have taken consent from her and sister to cremate her and perform funeral rites. During her final days she used to request the staff for food items of her choice. Call it premonition- Susheela requested to be taken to her former house to say good bye to her friends and neighbors. When she came back Susheela had one thousand rupees with her. She donated the amount to our administrator. Finally Susheela left this world and there was a sense of peace on her.  Her body was cremated with proper care and dignity and the funeral rites were performed by our staff.

As seen from the table below each one of the sixty patients who are admitted to the hospice each month has a story to tell like Susheela’s. The society and its staff have the satisfaction looking after such patients and ensuring that they have a peaceful pain free and dignified end. Admission particulars of Hospice are 149 male patients, 157 femlae patiens and 28 children 

Life At Your Door Step- A home based palliative care program

This is the story of Mr. Divan Shah.  She suffered with advanced Cancer Glottis. He underwent surgery and was left with Tracheostomy. He was referred to palliative care for his pain and tracheostomy care. Wife is the care giver and he has 3 children( girls). They used to live in a small little room which is as small as our wash room. Wife is also a TB patient. He often used to complain of severe pain 10/10 round the neck and difficulty in swallowing and disturbed sleep due to pain and other psychological factors. He was registered for home care as he is the patient from Hyderabad. Home care team used to regularly follow up with the patient trying to address his physical and psychological pain. Divan Shah was a auto driver and he was unable to work to his disease condition. His wife used to go for tailoring work and earn some little money to run the family. Through our organization we used to support the family by providing the basic needs like Rice, Dal, Oil etc for their day to day living. We also admitted in hospice for a couple of days and he was happy when he was at home surrounded by his children. Where as he used to stay in hospice with his wife.  The wife was well prepared and explained about his disease condition and his children were too young to understand about their father. One fine day Divan Shah is no more and passed away at home. We also put all his 3 children in a government school. We tried our best to make his end comfortable and peaceful. With the help of donors and well wishers we got his wife a sewing machine so that, she could take care of her children with her lively hood by tailoring by staying at home.Total patients seen in home based palliative care are 189 new patients and 1272 review patients in the city of Hyderabad and secunderabad. 

Community outreach program in Chevella Mandal, RRD Dist

A total number of 261 patients have been identified after a detail survey by our social worker in a cluster of 30 villages in Chevella Mandal about 60 kms from Hyderabad city. All these patients are suffering from ailments like quadriplegia, stroke, juvenile diabetes, HIV, Renal failure and cancer etc. They are in need for quality palliative care which is a far cry in a small village where even the basic facilities are not available. Our staff consisting of a doctor, a nurse, a physiotherapist and a social worker periodically visit the villages accompanied by 2 senior social workers who are based in the community. 38 visits were made by our team during the nine month period from Jan –Sep 2016. Anaverage of 8 patients who are identified by our local team were provided with medical care and psychological support during each visit. Assistance by way of groceries etc were also provided to those whose means of survival have vanished because of chronic illnesses.

The community outreach program has become very popular in this group of villages to such an extent that society is getting requests from neighboring villages for inclusion in this program. 

Supporting the Department of Pain & Palliative Care in MNJ Institute of Oncology, Hyderabad

On an average 60 patients per day are referred to the Department of Pain & Palliative Medicine, MNJIO for palliative and end of life care. The staff of the society interacts with patients and their caregivers at a personal level to understand their difficulties, emotional and financial problems and help them to cope with the traumatic period they are undergoing. At this stage, the patients are segregated depending on their condition into three groups, of those requiring home care, and those requiring hospice care. They are accordingly enrolled in the respective programs of the society.Total Number of Adult patients seen in Department of Pain & Palliative Medicine, MNJIO&RCC 2016 are 1859 new patients, 5061 review patients. 

Palliative Care for Children

‘Pooja asked for a purple cycle. Is there any way we can get her one?’

This was the question on the minds of the doctor, nurse, and counselor of the children’s palliative care department at MNJ hospital in Hyderabad last month. Pooja was a 12 year old child with leukemia on chemotherapy since a couple of months. We first met Pooja during a play hour session for all the children in the cancer ward. She danced to a popular Telugu film song and she looked just like any other healthy child, only more brave and lively. She showed us the true measure of her bravery when she started losing her liveliness.

A couple of weeks after that dance we got a referral from pediatric oncology to see Pooja for generalized body pain. She was in severe pain, confined to her bed, and her face had swollen up so we barely recognized her. She talked in a soft voice, telling us about her plans to re-write the school exams she was missing. Her mother started crying because the oncologist had told her that Pooja wasn’t doing well. Her blood cell counts were showing a downward trend. Over the next week Pooja got worse. She was passing blood in her urine and vomiting several times a day.

When we saw her one morning, she asked us for a purple cycle.

‘But, Pooja, will you be able to ride a cycle now?’

‘I will get better soon, and then I will ride the cycle.’

Pooja’s cancer was diagnosed to be relapsed and beyond cure and we realized that her purple cycle was something like a last wish. We approached the funds committee of the Pain Relief and Palliative Care Society with our proposal the same day. Pooja was now bed bound and we knew she would most probably never be able to ride that cycle, but that didn’t stop any of us. By the next day we had found a second hand pink cycle online and purchased it. We brought the cycle to her bedside and she reached out with her hand and grabbed the handle. Pooja passed away two days later in her sleep with the cycle by her side.

As seen in the table below total number of children admitted in the pediatric ward is an average of 30 per month. All these children are being cared for by the society’s palliative care team consisting of a doctor, a senior nurse, 2 social workers and a play therapist. This is proving to be a substantial value addition to the medical care being provided by the hospital. Our team also identifies and segregates such of those patients whose treatment is completed into those requiring home care and hospice care services of the society. Total Number of Children seen in Department of Pain & Palliative Medicine, MNJIO&RCC 2016 are 174 new children, 1285 review children.  

Home care program
Home care program
Children palliative care
Children palliative care
Susheela
Susheela's Good bye to everyone
Adandonded patient cremation by the team
Adandonded patient cremation by the team

Links:

 

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Organization Information

PAIN RELIEF AND PALLIATIVE CARE SOCIETY

Location: HYDERABAD - India
Website: http:/​/​www.palliativecarepartners.in
Project Leader:
Pain Relief and Palliative Care Society
HYDERABAD, Telangana India
$31,456 raised of $50,000 goal
 
251 donations
$18,544 to go
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