Consolidated Report

3102

Interim Report Project Number 1078- Community Based Palliative Care Program for the elderly, incurably ill, bedridden and dying people

Interim Report 15th July to 30th November 2013 Submitted to Swiss Re Foundation on 16 December 2013

Prepared by Project Team Swiss Re – IPM Project Villupuram

01-Jan-13 Contents

The consolidated interim activity report sets out our 4 months and 15 days activity starting from 15th of July to 30th of November 2013 on Project Number 1078- Community Based Palliative Care Program for the elderly, incurably ill, bedridden and dying people in Villupuram District of Tamilnadu state in India

Table of contents

Sl. No Particulars Page No

1. Local Partners for the Project 03 2. Villupuram at a glance 04 3. Capacity Building under the Swiss Re – IPM Project 06 4. Sensitization and awareness programmes 06 5. Training Programs 09 6. Consolidated programme statement 12 7. Home care programmes 16 8. Other activities 17 9. Summary 20

Local Partners for the Project The following local organizations collaborating with Institute of Palliative Medicine were identified/ formed / reoriented during the preparatory phase of the project to ensure sustainability through local participation and ownership.

Tamilnadu Institute of Palliative Medicine of Scope India (TN-IPM)

Tamilnadu Institute of Palliative Medicine (TN-IPM) is a unit of Scope India, which is a non- governmental organization, works in four distinct areas; Alternate Livelihood, Disaster Management, Child Rights and Palliative care. It was founded by a dedicated social worker Dr. S. Sathiyababu from Gandhigram University. TN-IPM Collaborates with Institute of Palliative Medicine for promoting community based palliative care approach that improves the quality of life of patients and their families facing the problem associated with life- threatening illness. Tamilnadu Institute of Palliative Medicine of Scope India (TN-IPM) has been identified as the main local partner of Institute of Palliative Medicine in the region

Villupuram Initiative in Palliative Care (VIP)

Villupuram Initiative in Palliative Care (VIP) is a consortium of voluntary organizations formed as a network of the community based organizations (CBO) and non-governmental organizations (NGO) in all blocks of Villupuram district during the preparatory phase of the project. VIP supports Swiss Re – IPM capacity building in palliative care project by facilitating the background work in the villages in the all blocks of Villupuram district through CBOs and NGOs. Villupuram Initiative in Palliative Care is committed to development of a community owned palliative care system in the district through facilitation of capacity building in the community and development of locally sustainable home care programs.

Representatives of the newly formed Villupuram Initiative in Palliative Care with the Director, Institute of Palliative Medicine

Villupuram district, at a glance Villupuram (also Vizhupuram) is one of the thirty districts which make up Tamil Nadu state situated on the southern tip of India. The district headquarters is located at Villupuram. Villupuram district came into existence on 30 September 1993 when it was created out of South Arcot district. Villupuram is the largest district in the state. According to the 2011 census Viluppuram district has a population of 3,463,284, roughly equal to the nation of Panama or the US state of Connecticut. This gives it a ranking of 93rd in India (out of a total of 640). The district has a population density of 482 inhabitants per square kilometer (1,250 /sq mi). The Literacy rate of Viluppuram District is 64.7%.

Villupuram district has 7 taluks, 22 blocks (Plate - I), 1104 panchayats and 1490 villages as detailed below.

Sl. No Taluk No. panachayats Blocks No. panachayats

1. Gingee 181 1. Melmalayanur 55 2. Gingee 60 3. Vallam 66 2. Tindivanam 155 1. Olakkur 52 2. Mailam 47 3. Marakanam 56 3. Villupuram 194 1. Koliyanur 48 2. Kanai 51 3. Kandamangalam 45 4. Vikkiravandi 50 4. Tirukoilur 261 1. Mugaiyur 63 2. Tirukoilur 52 3. Rishivandiyam 53 4. Sankarapuram 44 5. Thiruvennainallur 49 5. Kallakurichi 151 1. Thiyagadurgam 40 2. Kallakurichi 46 3. Chinnasalem 50 4. Kalrayan Hills 15 6. Ulundurpet 97 1. Ulundurpet 53 2. Tirunavalur 44 7. Vanur 65 1. Vanur 65 Total 1104 1104

In 2006, the Ministry of Panchayati Raj named Viluppuram one of the country's 250 most backward districts (out of a total of 640). It is one of the six districts in Tamil Nadu currently receiving funds from the Backward Regions Grant Fund Programme (BRGF). Even though there are 21 Hospitals are functioning to look after the Health and Family welfare of the people, the health and nutrition system demography reports portraits deprived growth in the district.

Capacity Building under the Swiss Re – IPM Project The Swiss Re – IPM Project is facilitating capacity building in community based palliative care service in the district through community out-reach programmes and volunteers training programmes.

The community based palliative care may seem to offer an incredibly broad range of services, the goals are extremely concrete: relief from suffering, treatment of pain and other distressing symptoms, psychological and spiritual care, a support system to help the individual live as actively as possible, and a support system to sustain and rehabilitate the individual's family.

The project strives to create a cadre of volunteers/ task force to provide care for patients in need, community care so as to provide care at their doorsteps by generating awareness among the various groups of people in the society. Three core areas in this program are

 Sensitization and Awareness Programme

 Identifying and Training of the Volunteers

 Development of Home care Programmes

Sensitization and Awareness Programmes

Identifying and Training of the Volunteers

Home care Programme

Sensitization and Awareness Programs Sensitization and awareness programs are aimed at generating awareness among the individuals, families, communities, community based organizations and elected representatives on the need for community based care and support especially for people with chronically/ terminally ill and bedridden patients. This contributes to the foundation of

6 sustainable value creation among the community. The different types of sensitization and awareness programs under the project are

1. One hour sensitization programme for community volunteers

This is the basic awareness programme that will be conducting in the community through street plays. It is one of our initiative through which we sensitize the community regarding the need and scope of community based palliative care service.

The villagers watching the theatre group’s performance on a rainy evening at Melathipakkam, Villupuram

2. One hour sensitization programme for Anganvadi and Asha workers

While sensitizing the Anganvadi and the Asha workers, we do grass root level outreach by connecting with primary health care workers at every village.

Sensitization Program for Anganvadi workers of Marakkanam block, Villupuram

3. Two hour sensitization for nursing students

While infusing the palliative care approaches to the nurses and nursing students we ensure that a group of nurses committed to compassionate care is available in future for sustained activities in palliative care in the region.

Nursing students sensitization programme at Thara Institute of Nursing, Villupuram

4. Two hour sensitization for doctors and medical students

This sensitization program is delivered at hospitals, Medical schools and professional meetings.

Dr. Anwar Hussain from explainig a slide show presentation to the doctors of Sri Manakula Vinayagar Medical College, Villupuram

Number of Sensitization programmes conducted from July to November

Sl. No Type of sensitization programe July-13 Aug-13 Sept-13 Oct-13 Nov-13 Total

5.1. One hour sensitization programe 06 05 08 08 03 30 6. for community volunteers 7.2. One hour sensitization programe - - - 01 02 03 for Anganvadi & Asha workers 8.3. Two hour sensitization programe 01 03 02 - 01 07 for nursing student/ professional 9.4. Two hour sensitization programe - 01 01 - - 02 for doctors 10. Total 07 09 11 09 06 42

Training Programmes

As range of training programmes are conducted with the aim to enhance the ability and competence of the local people to address the psychosocial needs of the patients and families,

9 and to facilitate the development of locally sustainable home care programs in the background of a network of nurses and doctors with expertise in palliative care to support these initiatives.

Groups of trained volunteers are linked to palliative care professionals and health care facilities in their communities. Community Volunteers are responsible for setting up palliative care units in the network. The following training programs are being conducted under the project.

1. Three hour training programme for volunteers

Three hour training programs are offered to volunteers identified during sensitization programs. This is the basic training in which a new volunteer will get know about the palliative care, terminal/ chronically ill patient, problems of the patients, role of the community etc.

Three hour volunteers training at Velathangal village, Villupuram

2. Fifteen hour train the trainer programme (TOT)

This programme aims at creating pool trainers to act as future resource persons In every batch we train more than ten volunteers.

Train the Trainer Program for volunteers - Villupuram

3. Three month community nurse training programme

Community nurse plays a vital role in home based care service by managing the symptoms and addressing the nursing issues during the home care visits. A community nurse training program is part of the project- Three months Basic Certificate Course in Palliative Auxiliary Nursing (BCCPAN) for supporting the local home care groups. The intake of the each batch is 10.

First batch of community nurses in the Swiss Re – IPM Project undergoing training

4. Six week BCCPN course for staff nurse

Basic Certificate Course in Palliative Nursing is meant to the staff nurses/ Bachelor of nursing graduates/ General Nursing and Midwifery graduates.

5. Six week BCCPM course for Doctors

Basic Certificate Course in Palliative Medicine at IPM, Calicut will train one doctor from Villupuram in year I and three doctors in year II Number of Training programmes conducted from July – November 2013

Sl. No Type of the training July-13 Aug-13 Sept-13 Oct-13 Nov-13 Total

1. 3 hour training for - 05 03 01 02 11 Community volunteers

2. 15 hour train the 01 01 - 02 01 05 Trainer programme

3. 3 month community - o1 - - - 01 Nurse training

4. 6 week BCCPN for - - - 01 - 01 Staff nurse at IPM

5. 6 week BCCPM for ------Doctors at IPM

Total 01 07 03 04 03 18 Consolidated programme statement

Sl. No Type of programme No. of program

1. 1 hr sensitization programme for community volunteers 30

2. 3 hr training programme for volunteers 11

3. 1 hr sensitization programme for Anganvadi workers 03

4. 15 hr train the trainer programme(TOT) 05

5. 3 month community nurses training 01

6. 2 hr sensitization programme for nursing students 07

7. 6 week BCCPN course for staff nurse 01

8. 2 hr sensitization programme for medical officers 02

9. 6 week BCCPM course for doctors -

10. Two day foundation course for volunteers 02

Total 62

Detailed programme list with date

Sl. No Date Type of programme Venue No. of participants 28.7. 2013 2 hr sensitization programme Villupuram 1. for nursing students 24 29.7. 2013 1 Hr Sensitization Programme Velanthangal 2. for Community Volunteers 124 29.7. 2013 1 Hr Sensitization Programme Pulipettu 3. for Community Volunteers 126 29.7. 2013 TOT Cudddalore 4. & 19 30.7. 2013 30.7. 2013 1 Hr Sensitization Programme Karapattu. 5. for Community Volunteers 103 30.7. 2013 1 Hr Sensitization Programme Eruvelpattu 6. for Community Volunteers 72 31.7. 2013 1 Hr Sensitization Programme Surapattu. 7. for Community Volunteers 85 31.7. 2013 1 Hr Sensitization Programme Athanur 8. for Community Volunteers 90 01.08.2013 3 months BCCPAN course one Cuddalore and Calicut 9. month expenses 14 01.08.2013 1 Hr Sensitization Programme Pidaripattu 10. for Community Volunteers 64 01.08.2013 1 Hr Sensitization Programme Ennaiyaram 11. for Community Volunteers 93 02.08.2013 1 Hr Sensitization Programme Marur 12. for Community Volunteers 73 02.08.2013 1 Hr Sensitization Programme Naganthur 13. for Community Volunteers 81 03.08.2013 1 Hr Sensitization Programme Chinnapappusmudiram 14. for Community Volunteers 57

03.08.2013 3 Hr Sensitization Programme Iruvalpettu 15. for Volunteers 25 06.8.2013 3 Hr Sensitization Programme Nembur 16. for Volunteers 26 07.8.2013 3 Hr Sensitization Programme Marur 17. for Volunteers 30 09.8.2013 3 Hr Sensitization Programme Velanthangal 18. for Volunteers 20 09.8.2013 3 Hr Sensitization Programme Pulippattu 19. for Volunteers 21 16.8.13 TOT Villupuram 20. & 25 17.8.13 20.8.13 2 hr sensitization programme Villupuram 21. for nursing students 19 23.8.13 2 hr sensitization programme Tindivanam 22. for nursing students 24 24.8.13 2 hr sensitization programme Kedar 23. for nursing students 22 31.8.2013 2 Hr Sensitization Programme Cuddalore 24. for Doctors 76 4.9. 2013 1 Hr Sensitization Programme Kolliyangunam 25. for Community Volunteers 80 4.9. 2013 1 Hr Sensitization Programme Kizhedayaalam 26. for Community Volunteers 71 6.9.2013 1 Hr Sensitization Programme Melathipakam 27. for Community Volunteers 45 7.9.2013 2 hr sensitization programme Thamarakulam 28. for medical officers 60 11.9.2013 3 hr volunteer training Kizhedayaalam 29. 21 12.9.2013 3 hr volunteer training Melathipakam 30. 38 18.9.2013 1 Hr Sensitization Programme Veeraanam 31. for Community Volunteers 71 18.9.2013 1 Hr Sensitization Programme Sorapur 32. for Community Volunteers 73 18.9.2013 2 Days foundation course for Thindivanam 33. & Volunteer 19 19.9.2013 19.9.2013 3 Hr Sensitization Programme Sorapur 34. for Volunteers 20

21.9.2013 1 Hr Sensitization Programme Sernthanur 35. for Community Volunteers 82 21.9.2013 1 Hr Sensitization Programme Arasamangalam 36. for Community Volunteers 80 22.9.2013 2 Days foundation course for Velanthangal 37. & Volunteer 25 28.9.2013 24.9.2013 2 hr sensitization programme Villupuram 38. for nursing students 49 26.9.2013 1 Hr Sensitization Programme Pallikulam 39. for Volunteers 89 30.9.2013 2 hr sensitization programme Villupuram 40. for nursing students 51 30.9.2013 6 week BCCPN for Calicut 41. To Staff nurse at IPM 01 14.11.13 09.10.2013 1 hr sensitization programme Ozhundyanpettu 42. for community volunteers 80 09.10.2013 1 hr sensitization programme Kodur 43. for community volunteers 60 10.10.2013 1 hr sensitization programme Melpallikulam 44. for community volunteers 60 10.10.2013 1 hr sensitization programme Intharasankuppam 45. for community volunteers 76 11.10.2013 1 hr sensitization programme Arasoor 46. for community volunteers 60 11.10.2013 1 hr sensitization programme Poigarasur 47. for community volunteers 63 12.10.2013 1 hr sensitization programme Pulichapallam 48. for community volunteers 80 12.10.2013 1 hr sensitization programme Napalayam 49. for community volunteers 60 15.10.2013 3 hr training programme for Ozhundyanpettu 50. community volunteers 34 19.10.2013 TOT Pulichapallam 51. & 20 27.10.2013 25.10.2013 TOT Iruvalpettu 52. & 20 27.10.2013 28.10.2013 1 hr sensitization programme Koliyanur 53. for Anganvadi Workers 93

10.11.2013 3 hr training programme for Serndanur 54. community volunteers 32 14.11.2013 1 hr sensitization programme Athipakkam 55. for community volunteers 70 20.11.2013 1 hr sensitization programme Pidagam 56. for community volunteers 60 20.11.2013 1 hr sensitization programme Puthumangalam 57. for community volunteers 65 20.11.2013 1 hr sensitization programme Marakkanam 58. for Anganvadi workers 96 21.11.2013 1 hr sensitization programme Vanur 59. for Anganvadi workers 99 25.11.2013 3 hr training programme for Karapettu 60. community volunteers 20 26.11.2013 TOT Serndanur 61. & 25 27.11.2013 28.11.2013 2 hr sensitization programme Arasoor 62. for Nursing students 18 Home Care Programmes

Support and facilitation of community owned home care programs is one of the objectives of the project. These are programs where community volunteers, nurses and doctors visits the terminal/ incurably ill and bed-ridden patients and their families to respond to their Physical, Psychological, Social, Economical and Spiritual needs. The assumption when we planned the project was that the sensitized and trained community will begin home care initiatives in the region by the end of the two year project.

But it was wonderful to see this happening in the first quarter of the project itself. Two home care programs have already started by local community in the region. (Melathipakkam and Iruvalpettu villages of Villupuram district)

1. Udhaivum Karangal Home care unit at Melathipakkam Udhaivum karangal is a tamil word which means ‘Helping Hands’ is the first home care group that was started on 19th of September 2013 within three months of sensitization and training activities under the project. The activity is supported by by a local women self help group called Women Bright Society, Tindivanam. Community volunteers formed a home based care committee after the training. The area of operation covers the neighboring villages and 13 patients are already being taken care of by the volunteers with the help of community nurse and doctor supported by Tamilnadu Institute of Palliative Medicine

The first home care programme with Dr. Suresh Kumar at Melathipakkam, Villupuram

2. Krish community based home care unit at Eruvalpettu

The second home care group was formed in Eruvalpettu village on 9th of November 2013 by the local volunteers with the support of a local trust named Krish Trust. The local panchayat welcomed the programme by offering the vehicle the home care visit. The community volunteers adopted two more neighboring villages and formed a joint committee for the overall management of the home care unit.

Community volunteers and nurse talking with the patient during home visit at Eruvalpettu

Other Activities The other activities under the project include

1. Formation of a district level volunteers committee

A district level volunteers committee was formed and incorporated to Villupuram initiative in palliative care (VIP). The committee consists of the representatives from the voluntary organizations and community volunteers from the different blocks of Villupuram district. The representatives are responsible for promoting and supporting palliative care actives in their respective areas and the activities are reviewed during the regular monthly meetings.

List of local Civil Society Organizations which joined VIP follow.

Sl. No Name of the Organization Name of the block 1. Krupalaya Koliyanur 2. Sevalayam Kandamagalam 3. Sawe trust Vikravandi 4. Tamilannai Kanai 5. The third eye trust Thirukovillur 6. SCF trust Koliyanur

7. Krish trust Thiruvennainallur

8. Women development society Mailam

9. WBS Ollakur

10. VPDS Vallam

11. Sunt trust Gingee

12. Annaicharity trust Gingee

13. SEEDS trust Melmaruvathur

14. WBS Marakanam

15. Vasantham trust Vanur

16. Learn trust Vanur

17. Paraac trust Kallakuruchi

18. Star trust Ulundurpettai

19. Tamilannai trust Kanai

2. Exposure visit to Institute of Palliative Medicine (IPM)

The representatives from Villupuram initiative in palliative care (VIP) visited IPM on 26/08/13. They visited the in-patient facility (IP) and out-patient facility of IPM where they observed the function of the facilities and interacted with Dr. Suresh Kumar, the Director of IPM. They also visited few palliative care clinics and home care service run by the community.

The VIP representatives interacting with Dr. Suresh Kumar and team at IPM, Calicut

3. Preparation of IEC materials & log books in regional language

A set of IEC materials were prepared in local language (Tamil) for easy dissemination and network with the locals. The flip charts; flex boards, notices, pamphlets, and brochures generated are used during sensitization and training programmes.

4. Distribution of Home Care Kit

The home care kits were been distributed to Udaivum Karangal home care unit, Melathipakkam and Krish home care unit, Eruvalpettu village. The kit contains necessary medical equipments, articles and medicines. This serves as the ‘start up’ kit for the local home care initiatives.

5. World Hospice and Palliative Care day Celebration

World Hospice and Palliative Care day was celebrated in Villupuram on 28th October 2013 Villupuram Initiative in Palliative care (VIP) and the Tamilnadu Institute of Palliative Medicine (TNIPM) took the lead role in organizing this sensitization event. A procession

was flagged off by Mr. Vijayakumar, Joint Director, Health, Villupuram district, Tamilnadu. He also addressed the mass and the students about how palliative care can help people suffering from incurable illnesses.

A snap shot from the students’ procession on Palliative Care Day at Villupuram

Summary:

The project is moving in the right direction. The response from the community clearly shows that we will be able to go beyond the targets

We have so far sensitized a total number of 2386 people from 30 villages, 288 Anganvadi workers from 3 blocks, 207 nursing students and 18 nursing professionals from 7 paramedical institutions and 136 MBBS graduates and 13 medical officers from 2 medical colleges in Villupuram district during the first five month period of the Swiss Re – IPM capacity building project.

Our distinct training programmes have led to the formation of a consortium of 306 community volunteers from 12 villages, a pool of 109 palliative care trainers, 12 community nurses and o1 staff nurse at Villupuram. Two home care programs evolving out of this is already in place.

We have already created a network of 19 voluntary organizations that endorses and supports various palliative care activities in and around Villupuram district through the Villupuram initiative in palliative care committee (VIP).