Palliative Care in Hyderabad

Pain Relief and Palliative Care Society

Annual Report FY2018-19 ( 1st April 2018 to 31st March 2019)

It is indeed a pleasure to chronicle this extraordinary journey of Pain Relief and Palliative Care Society year after year. Every year is equally momentous and significant with goal posts getting shifted further and further. The year 2018-19 has been no exception.

The year saw consolidation in all the existing programs even while the members of the society were busy implementing the District Palliative Care Centres program in eight districts of Telangana State. The society can proudly declare that it has successfully established Palliative Care Centres in 8 District/Area/Teaching hospitals spread across the state from Adilabad to Khammam. This work involved daily coordination with District Collectors, Medical Superintendants and Civil contractors apart from recruiting and training 112 staff consisting of Doctors, Nurses, Physiotherapists Ayammas and others. All the 8 centres became fully functional and found wide spread patronage with hundreds of patients visiting them every day. The centres were finally handed over to the District Medical Authorities on                        31^st March 2019. It is indeed a feather in the cap of the society to have successfully completed such a monumental and gigantic task and that too entirely on a voluntary basis.

Meanwhile, all the other programs went on smoothly and seamlessly with Room 34 of MNJ Government Cancer Hospital serving as the nerve centre. In a nutshell the society is presently running the following programs:

1. 21 Bed Kumudini Devi Hospice in Kukatpally where on an average 60 patients get admitted every month.

2.   Home care program in the city of Hyderabad and surrounding areas with 5 vans caring for 300 plus patients on any given day averaging between 18-20 visits/day.

3.  A unique Pediatric Palliative Care program embedded in the Oncology unit of MNJ Cancer Hospital looking after children’s’ need and support while undergoing cancer treatment which is now going to be extended to the neighbouring Niloufer children’s hospital to care for non-cancer palliative care needs.

4. Supporting activities of Department of Pain and Palliative Medicine in MNJ Government Cancer Hospital.

5. Training, education and advocacy in the field of Palliative Care. Conducting six weeks certificate course in pain and palliative medicine/nursing in association with MNJ Cancer Hospital.

6. Supporting Home care program in Vishakapatnam being run by Age Care Foundation.

7. Conducting a virtual training program under the ECHO umbrella in which participants from both national and international locations join and undergo continuing medical education in niche subjects like pediatric palliative care etc.

8. A unique oral cancer early detection project is also underway in partnership with Two Worlds Cancer Collaboration using the latest medical equipment called Velscope to detect oral cancers in the rural set ups.

The society has on its rolls a dedicated, committed and well trained staff consisting of              10 Doctors, 22 nurses, 6 social workers and 30 other supporting staff rolling out all the above programs. The fact that all the society’s services are being offered entirely free of cost is a matter of great pride to all of us and also a tribute to the generosity of our institutional and individual donors both big and small.

In keeping with our past trends of ever expanding the palliative care services even while running the existing services, the society signed an MOU with Government General Hospital, Kurnool to start a Palliative Care centre which was inaugurated on 18^th May 2019. While the entire infrastructure for the centre is provided by the Hospital, the salaries of the staff are being borne by PRPCS. The centre in Kurnool consists of an 8 bed in-patient facility in the hospital premises and home care program covering the city of Kurnool and surrounding areas along with out-patient services. Presently there are no palliative and end of life care facility in Kurnool and its surrounding areas and hence we expect this centre which will be the first of its kind in the state of Andhra Pradesh to play a major role in not only taking care of the needs of those suffering from end stage diseases like cancer but also be a role model for Government Hospitals in other districts to emulate.

PERFORMANCE STATISTICS: FY2018-19

Kumudini Devi Hospice:

No. of admissions – 741

Male- 346

Female- 359

Children- 36

Home Care Program:

Total Number of Registrations- 574

New visits- 571

Review visits – 3136

Total visits- 3692

Pediatric Palliative Care Program:

New patients- 306

Patients Review - 6057

Total – 6363

Supporting Department of Pain and Palliative Care, MNJ Government Cancer Hospital

New Patients - 4238

Review patients – 17621

Behind these figures and statistics lie extraordinary stories of hope, courage, love and compassion. These are not mere patients but are mortal beings who will not go back to their previous lives and have to deal with the ultimate reality of life ending in the near future. To care for such patients calls for qualities which are rarely found among most of us. No words can effectively describe and capture the dedication and selfless service of our staff of Doctors, Nurses, Social workers, Physiotherapists and so many others who work tirelessly and reach out to the patient and their caregivers for providing both care, comfort and dignity in the last stages of their lives.

Statement of Annual Expenditure- Program Wise

1. Kumudini Devi Hospice- Rs. 64,59,345
2. Home Care Program-Rs. 50,70,351
3. Pediatric Palliative Program- Rs. 12,90,401
4. Vizag Home care – Rs. 14,72,718
5. Supporting Department of Palliative Care in MNJ Cancer Hospital- Rs. 11,13,243
6. ECHO Project- Rs. 3,87,500
7. Oral Cancer Screening Project – Rs. 4,10,000
8. Palliative Care Central Monitoring Team support- Rs. 14,55,283

Total Expenditure – Rs. 1,76,58,841

All the above achievements would not have been possible but for the consistent financial support being received from our major partners Two Worlds Cancer Collaboration, Value Labs, Roshni Trust, HPPC Trust, United Care Development Services, Dr. Reddy’s Foundation, Viruj Pharmaceuticals, Ocean Sparkle Ltd, Delta Technologies, GlobalGiving, Helpage India, Infor India, Fernandez Hospital, Estate of Narandas Lakhani, Unicorn Natural Products Ltd, Deloitte, Karvy, BHEL, Family of Late. Smt. V. Lalitha Kumari, Family of Justice Sri. Jagannadha Rao, Sri. Pankaj Dara, Sri. S. Kamalakar Sharma, Sri. Vijay Kumar, Sri. Ramananda Swamy, Robinhood team, Family of Smt. Suneetha and countless other individual donors, both big and small. A special mention of Sivananda Rehabilitation Home and MNJ Cancer Hospital who have provided the infrastructure and space for running the hospice and home care programs respectively.

It is said that if you embark on doing selfless work which helps the poor and the sick and the needy, the universe extends its unstinted support. The story of Pain Relief and Palliative Care Society provides ample proof to this saying. The fact that we are providing all our services entirely free-of-cost is nothing short of a miracle of which all of us are truly proud!

‘The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,’- Robert Frost

This aptly sums up the journey of Pain Relief and Palliative Care Society

PAIN RELIEF AND PALLIATIVE CARE SOCIETY

 ANNUAL REPORT 2017-18

The year has been one more year of growth and consolidation on all fronts for the society. Perhaps the most significant achievement has been the signing of the Memorandum of Understanding with the Commissioner of Health, Government of Telangana for starting of Palliative Care Centres in 8 districts. This is probably the single biggest achievement in mainstreaming Palliative Care services within the overall Government health system. The fact that Pain Relief and Palliative Care Society was chosen as the agency for delivering Palliative Care services speaks volumes of the credibility and quality of our various programmes being run in the city of Hyderabad

Other major landmarks achieved during the year are listed below.

1. Home Care - A new home care van exclusively meant for children in the age group 0 to 18 was started on 1st February 2018. With this, we now have 5 home Care vans in the city catering to about 250 patients at any given point of time. 

Reddy Labs Foundation and Nimmagadda Trust joined the list of partners in the home care programme promising to support one van each. The other three vans are being supported by Roshni Trust, United Care Development Services, and Hyderabad Pain and Palliative Care Trust, respectively. The family of Late. Smt. V. Lalitha Kumari continues to be a major supporter of the programme.

 A senior doctor and a physiotherapist have been recruited for the Homecare programme in addition to the doctor already available. The homecare team now consists of 2 doctors, 5 nurses, 5 social workers, 5 drivers, and 1 physiotherapist.

2. Kumudini Devi Hospice: The lease with Sivananda Rehabilitation Home, SRH, which was expiring in April 2018 was extended for a further period of 5 years bringing much needed stability in the hospice programme. A senior doctor was recruited to head the hospice. Extensive refurbishing work was done in the hospice with help from M/s Deloitte to give the premises a neat and clean appearance. New furniture was purchased to replace the old furniture borrowed from SRH. A housekeeping manager and a pharmacist were recruited to streamline the services. The 24-bed Hospice has a staff of 25 members to look after the 60-plus patients admitted in a month. Apart from free medical care and medicines, patients and their caregivers are also provided with free food and accommodation. A Tata Winger ambulance is available for transportation of patients and their families free of cost to their respective homes in the event of death. The total number of patients admitted in the hospice during the year was 717.

With consistent support from our major donors like Value Labs Foundation, Ocean Sparkle Ltd, Infor India Pvt Ltd, M/s Karvy and Estates of Narandas Lakhani, Sri. Pankaj Dara and family, and many other donors, both big and small, a degree of financial stability has been achieved in the running of the hospice. The senior doctor has bought about a significant improvement in the patient care services being given at the hospice

3. Pediatric Palliative Care Program (0-18 years) - This unique pediatric palliative care program is now headed by a senior Pediatric Palliative Care specialist supported by a staff consisting of 2 nurses, a social worker, and a play therapist. The staff is fully integrated with the doctors and nurses of the 100-bed Pediatric Oncology Ward in the Government MNJ Cancer Hospital, and provide palliative care to all the in-patients right from the time of the diagnosis and home care to provide continuum of care. 

4. Palliative Care Centres in the Districts – An MOU was signed with the Commissioner of Health and Family Welfare, Government of Telangana, for setting up Palliative Care Centres in the Districts/Area hospitals. In the first phase, 8 such centres are being set up in Rangareddy, Mahbubnagar, Yadadri, Siddipet, Khammam, Warangal, Kamareddy, and Adilabad districts. The first 4 have already started functioning and the remaining are in the process. Each centre consists of 8/10 in-patient bed facility in the premises of the Area/District hospital and a home care program covering patients in their houses in a radius of 25-30 kms from the hospital. This program is being entirely funded by the Government of Telangana and aims to provide palliative/end-of-life care to patients living in rural communities who are unable to reach Hyderabad for their treatment and care. The program eventually aims to cover all the 31 districts of the Telangana state and will be the first of its kind in the country to provide palliative care and end-of-life care to the entire population of the state. United Care Development Services is also participating in the program as a partner. PRPCS will recruit and train the staff consisting of a Doctor, 5 nurses, a physiotherapist, 2 multipurpose health workers apart from the supporting staff. PRPCS will also supervise day-to-day functioning of the centres. This constitutes a major challenge which we are confident of meeting and making it a success, which will be showcased as an example for other states who want to develop similar palliative care services in rural communities. 

5. Palliative Care in Ananthapur - As a first step in initiating the scope of delivery of palliative care in the state of Andhra Pradesh, PRPCS has signed an MOU with Government General Hospital, Ananthapuramu, and started an out-patient palliative care clinic and supported by home care service. The team consists of a full-time doctor, 3 nurses, and 1 social worker. It is planned to start a 10-bed in-patient facility in the hospital premises in the future to provide intensive care round the clock.

In addition to all the programs, PPRCS is also working in close collaboration with Two Worlds Cancer Collaboration for early detection and screening oral cancers using the latest technology in a rural setup. This project conceived by the BCCA, Canada, and aims to establish the feasibility of screening rural population across the communities. The project is intended to screen about 1000-plus patients in Chevella Mandal, RR District. Another initiative has also commenced with help from Two Worlds Cancer Collaboration for running an online virtual training program, ECHO. The hub for the program has been established in Kumudini Devi Hospice in Kukatpally, Hyderabad, where presently online pediatric palliative care classes are conducted once in 2 weeks with participants from 20 different centres in India and abroad.

PERFORMANCE STATISTICS

Kumudini Devi Hospice:

No. of admissions – 717

Male- 349

Female- 318

Children- 56

Home Care Program:

Total Number of Registrations-550

New visits- 495

Review visits –2534

Bereavement visits- 91

Total visits- 3120

Pediatric Palliative Care Program:

New patients- 418

Review patients- 6157

Total patients- 6575

Behind the figures and statistics lies an extraordinary story of hope, courage, love and compassion. These are not mere patients but are mortal beings who will not go back to their normal lives and have to deal with the ultimate reality of life ending in the near future. To care for such patients calls for qualities which are rarely found among most of us. No words can effectively describe and capture the dedication and selfless service of our staff of Doctors, nurses, social workers and others who work tirelessly and reach out to the patient and their caregivers for providing both care and comfort in the last stages of their lives.

All the above achievements would not have been possible but for the consistent financial support being received from our major partners Two Worlds Cancer Collaboration, Value Labs, Roshni Trust, Hyderabad Pain and Palliative Care Trust, United Care Development Services, Ocean Sparkle Ltd, Infor India Pvt. Ltd, M/s Karvy, Estate of Narandas Lakhani, Deloitte, and countless other donors, both big and small.

It is said that if you embark on doing good, then the universe supports you. The story of PRPCS provides ample proof to this saying. The fact that we are providing all our services entirely free-of-cost is nothing short of a miracle of which we are really proud!

Links:

• Article about District Palliative care centres in Telangana