Sister Alexia – Administrator, Shanti Avedna Sadan, Delhi: interviewed by Lucy Selman, 11 March 2005.  Length of interview: 36 minutes.

Sister Alexia became the Administrator of Shanti Avedna Sadan in Delhi in 2003. She previously worked at Shanti Avedna Sadan in Mumbai, the first hospice in India, and was there when it opened in 1986. Here she talks about her experiences of working in hospice care, including the fulfilment it brings her and the problems and experiences of patients and their families. She discusses some of the barriers hospice staff face, such as communicating with people from rural areas, relatives wanting to conceal the prognosis from the patient and lack of awareness about palliative care. She also mentions some of the other organisations working in cancer care in Delhi with which the hospice has collaborated. Finally, she talks about the spiritual and psychological concerns of patients and the future plans of the hospice.      

Mr Joseph Anam – Volunteer, Pain and Palliative Care Clinic, Vazhakulam: interviewed by Lucy Selman, 1 February 2005.

Dr Neeru Anand - Head of Chandigarh Hospice, Chandigarh: interviewed by Michael Wright, 12 February 2004 (with Dr Firuza Patel and Dr Minni Arora).

Dr Anand outlines the tensions among families with sick relatives, but speaks of the satisfaction seeing such stresses diminish as symptoms are brought under control. Families are welcome and included in discussions so all feel involved. Communication with Dr Minni Arora (Head of the home care service) ensures that when patients are admitted, their needs are known and everything is prepared for them.

Sister Ancy – Sister in Charge, Shanti Avedna Sadan, Mumbai: interviewed by Lucy Selman, 5 April 2005. Length of interview: 15 minutes

Sister Ancy is the Sister in Charge at Shanti Avedna Sadan in Mumbai. Here she talks about how she started working at the hospice, and the difference between working here and at a hospital, both in terms of the kind of care provided and the rewards for her on a personal level. She discusses the questions and concerns that patients have and the sisters’ role in helping them find positivity and transformation at the end of their lives.  

Dr Minni Arora - Head of Home Care Service, Chandigarh Hospice, Chandigarh: interviewed by Michael Wright, 12 February 2004 (interviewed with Dr Firuza Patel and Dr Neeru Anand).

Dr Arora speaks about the home care service and the seamless transition from the radiotherapy clinic (where she also works) to the home care service (which she manages). This continuity with known staff is highly valued by patients. The service extends to a radius of 25 kilometres and has grown from 6 per month to 25 per month.

Sister Alfia – Nadavayal Neighbourhood Network in Palliative Care(NNPC), Wynad: interviewed by Lucy Selman, 15 January 2005.  Length of interview: 6 minutes.

Sister Alfia is a nurse at Nadavayal NNPC group, Wynad District, Kerala, and trained at IPM in Calicut. Here she talks about the group’s plan to open an inpatient unit at the local hospital, St Ann’s. The interview was conducted after a meeting to discuss the plans which was attended by Dr Shamsudeen, the NNPC co-ordinator for Wynad, Sr. Provincial (Mother Superior at St Ann’s), 3 other sisters and a doctor. Sr Alfia also discusses the paraplegic patients’ workshop to be held that day at the hospital in conjunction with palliative care day (15th January).

Mr T.S. Babu – Volunteer, Kalpeta Neighbourhood Network in Palliative Care, Wynad: interviewed by Lucy Selman, 2005.  Length of interview 7 minutes.

Mr Babu is a coffee planter in Wynad and a volunteer for the Kalpeta NNPC group. Here he talks about how he came to be involved in palliative care and the work of the volunteers. He also discusses the group’s plans for a clinic in Kalpeta and gives some background to the area.

Dr Mohan T Bhatia - Head of Pain Clinic and Palliative Care, Rajasthan, Ahmedabad : interviewed by Lucy Selman, 2 April 2005.  Length of interview: 49 minutes.

Dr Bhatia has been working in palliative care in India since 1973 and was a founding member of the Indian Association of Palliative Care. Here he talks about the initial concept behind the Vasna hospice in Ahmedabad (Gujarat), which was to train doctors, nurses and primary healthcare workers in order to spread the palliative care message in rural areas. Problems with funding mean that the centre is now used as a training centre for family members and an anti-cancer exhibition.
Bhatia expresses the view that the ideal system of palliative care in India would be trained primary healthcare workers, based in the villages, with local access to morphine. As it is, carers and neighbours of patients have to come into the city to pick up medicines. He goes on to discuss how the population of the region and problems such as a low literacy rate, poverty and different healthcare priorities prevents a model like that being run in Kerala from working in the area.
He talks about changes in the palliative care scene that have occurred over his career and what he believes is holding back the development of palliative care in the northern states. Outlining crucial events in the history of Indian palliative care he points to the following as important milestones: the formation of the Indian Society for the Study of Pain in 1984; the use of morphine and radiotherapy in palliation; the building of the Vasna centre in Ahmedabad; the provision of free morphine by the government to all regional cancer centres; the formation of the IAPC in 1994, and the change in government morphine legislation brought about with the help of Jan Stjernswald.
He also discusses the use of opium as a recreational drug and how this relates to its medicinal use in treating cancer pain, and the services provided at the Rajasthan hospital where he works. Finally, he talks about what would help establish palliative care more firmly in the north, pointing to government bureaucracy as a hindering factor in training healthcare workers, and funding by external agencies as a possible solution to the problem.

Dr Sushma Bhatnagan - Rotary Cancer Hospital Pain Clinic, All India Institute of Medical Sciences: interviewed by Lucy Selman, 9 March 2005. Length of interview: 22 minutes.

Dr Bhatnagar is an anaesthesiologist at the Institute Rotary Cancer Hospital (IRCH) at the All India Institute of Medical Sciences (AIIMS) in Delhi, one of the biggest government teaching hospitals in India. The cancer centre has 200 beds and the whole hospital 1500 beds, with free treatment offered to the poorest patients while more wealthy ones are charged accordingly e.g. for private wards. Here she talks about the pain clinic started eight years ago at the IRCH, which is focussed on symptom management and pain control, but also offers homecare by working in conjunction with CanSupport . Although staff shortages are a problem, and Dr Bhatnagan has requested more nurses and a psychologist for the team, the team currently also tries to offer psychological support and includes a physiotherapist. They see 20-25 new patients at every clinic (held twice a week) and a total of 40-60 patients from all over north India per clinic. Head and neck, cervical, breast and lung cancer are most common, and 90% of patients are at the palliative stage. The team conducts training and awareness-raising sessions on palliative care and prescribing morphine at the cancer centre. Dr Bhatnagan has also requested to the director of AIIMS that 15 hours of palliative care training be included on the undergraduate syllabus. She explains that morphine is provided to patients at no charge although the hospital has been buying it since free WHO stocks ran out in 2004. The most common worries of patients are discussed, such as family concerns and financial worries for patients whose resources have been drained by paying for cancer treatment. Dr Bhatnagan states her future plans are to extend the clinic times to daily and start a palliative care in-bed facility. Staff and space are identified as the main barriers to extending the service, and the foundation courses conducted yearly with CanSupport are seen as an important educational tool.

Dr Anju Bhattacharya – General Practitioner: interviewed by Lucy Selman, 6 April 2005.  Length of interview: 31 minutes.

Here Dr Bhattacharya, a G.P. in Mumbai, talks about how she has became involved in palliative care through working at the Shanti Avedna Sadan in Mumbai and doing a course in palliative care in Lyon, France with Marilyn Filbert. She mentions the strength of the family unit in India as beneficial to palliative care in India, although lack of awareness amongst medical staff is a hindrance. She currently sees a few patients through her private clinic in north Mumbai, and talks about how lack of time and money restricts the work she can do. She talks about morphine availability in Mumbai and the need for more palliative care services, with her dream being to set up a hospice in north Mumbai and in Assam, where she is from. She also talks about awareness-raising through Assam House in Mumbai and what she needs in order to expand her palliative care work at the clinic, especially guidance from other practitioners in the field. Finally, she discusses patients which have inspired her in her work

Gilly Burn – Nurse and founder, Cancer Relief India: interviewed by Michael Wright, 13 February 2005. Length of interview: 50 minutes

Dolly Roy Choudhury -Volunteer with the Guwahati Pain and Palliative Care Society, Assam: interviewed by Rosemary Mingins, 13 Feb 2005. Length of interview: 10 minutes.

Dolly Roy Choudhury was an only child and her father died when she was about thirteen. She struggled through her secondary and then further education in spite of the grief and financial worries. She took her MA in political science and then taught at the Guwahati University High School. Then her mother arranged for her to get married and after two months her husband was diagnosed with cancer and died within ten months. With great difficulty she continued to work but then her mother was diagnosed with cancer and died in February 2004. Following the words of Vivikananda she believes that through her suffering she can serve God. She was encouraged to join the Pain and Palliative Care Society at Guwahati as a volunteer after her mother’s death.

Professor Saraswathi Devi  - Professor of Anaesthesiology and Head of Palliative Care, Kidwai Memorial Institute of Oncology, Bangalore: interviewed by Lucy Selman, 5 January 2005. Length of interview 1 hour 12 minutes. Also interviewed by Michael Wright, 14 February 2004.  Length of interview 43 minutes.

Saraswathi Devi describes her work at the Kidwai Memorial Institute of Oncology where up to 2,200-2500 new cases and 4000 follow-up cases are seen in the palliative care department each year. Morphine is available. Although research does not feature prominently, there is a wide range of educational courses. Saraswathi Devi tells of the ways in which palliative care embraces a more comprehensive approach than traditional medicine and how at first she found it uncomfortable being in the company of other professionals when dealing with patients. She also tells how every Indian parent wishes for their child to become a doctor and join a respected and lucrative profession. Palliative care, therefore, is confronting ingrained medical attitudes which resist any form of non-lucrative referrals or multidisciplinary work. She then speaks of the difficulties brought about by the deep-seated corruption that reaches all levels of Indian Society, and which also encompasses health care organisations and institutions. As the daughter of a British serviceman, she was raised with a sense of duty and insists on a no-corruption policy within her service. She goes on to speak of her role as president of the IAPC and of national issues such as the unavailability of morphine, the lack of palliative care training in medical curricula, the growth and development of the National Association and her vision for the future. It is time, she says, for people to find an inner strength in India, to stand up and change things for the better. In addition to confronting the unavailability of morphine, the biggest single step forward would be to introduce palliative care into  medical curricula.

In her second interview, Dr. Saraswati Devi talks about the history of the Pain Relief Clinic, running since 1988, morphine distribution and the Palliative Care Department, open since 1994. She also raises her experiences as someone trained in anaesthesia moving into palliative care, including personal lessons regarding false assurances and truth-telling in palliative care. The role of volunteers is mentioned, and how a secular institution such as Kidwai handles spirituality and religion. As an ex-president of the IAPC, Devi discusses the history and role of the IAPC, the problem of palliative care not yet being a speciality in its own right, and the need to include palliative care in the medical curriculum. She talks about some of the ethical dilemmas they face as a department, such as when to stop active treatment, requests for euthanasia, disclosure of diagnosis to patients whose families do not want them to know, and the religious as well as practical issues involved when a patient dies at home or in the hospital. She discusses the institution’s needs and the future of palliative care in India, emphasising the need to train nurses and what they can learn from trips to the West. Finally, she talks about problems with trying to implement the NNPC ‘model’ in a metropolis such as Bangalore, and the importance of emphasising both palliative medicine and palliative care equally.

Dr Reena George – Head of the Palliative Care Unit, Christian Medical College & Hospital,Vellore: interviewed by David Clark, 26 November 2004.

Dr George describes in this interview the development of the palliative care services in Vellore which are based in the Christian Medical College and Hospital. She believes that the service, which is located in the teaching hospital and nursing college, has made reasonable progress with education and clinical developments but has not managed, so far, to incorporate the community. The service started with a weekly clinic with two doctors and then the Rev John Lunn joined as a volunteer, which helped to guide the palliative care programme. Dr George then talks about the struggles to establish the service which include making oral morphine available, funding and providing training for staff. There are now twice weekly clinics and home care visits once a week. She talks about the importance of the oncology trainees, which provide the backbone of the medical care, both in terms of service provision and student training in palliative care. Some of the registrars who have worked in the clinic have gone on to set up palliative care clinics in other parts of the country. In one case, Dr George explains that a registrar refused a consultant post in oncology but chose instead a consultant post in palliative care. Nursing staff are also becoming interested in palliative care with a small number choosing to focus on palliative care for their MSc dissertations. Dr George speaks with relief that the hospital administration now provide long term funding for a chaplain, social worker, nurse and doctor for the service. She also talks about the importance of spiritual care to the service and feels fortunate that it has remained central to palliative care when there are so many demands on busy clinics. Future plans for the service include the development of a hospice and training centre in collaboration with a Catholic organisation . Dr George concludes the interview by speaking about her role as editor of the Indian Journal of Palliative Care.

Dr Dinesh Goswami – Secretary, Guwahti Pain and Palliative Care Society; medical director –Durga Nath Hemo Prova Hazarika Memorial Palliative Care Clinic: interviewed by Michael Wright (with Dr Kabindra Bhagabati), 14 February 2005. Length of interview: 48 minutes

Dr Goswami describes how his contact with cancer patients and background as an anaesthesiologist drew him towards palliative care in 1991. After being trained in Calicut (1998), he was instrumental in forming the Guwahati Pain and Palliative Care Society (1999); this was closely followed by the first palliative care service in the north eastern states of India. Once the clinic was established, the Kerala community model was adapted for use in Guwahati and a home care service began (2001), supported by local volunteers. Assam is known for its broad mix of cultures and religions. Consequently, dialogue has begun with religious leaders to facilitate their support. Among numerous challenges, one of the most pressing is communication with the patient: most of them arrive at the clinic with no knowledge of their diagnosis. Unlike in other Indian states, the procurement of morphine is generally unproblematic and the drug has been available for about a decade. Dinesh Goswami tells how the clinic has increased its staff, how training has been made available to health workers locally and in Kerala, and how funding has been forthcoming from the Wilfred Bruce Davis Trust, a UK charity. Successes include a growing community involvement and the donation of a house to advance the needs of the service. Future plans include the setting up of local centres throughout Assam and the training of volunteers in other cities.  

Dr Sawita Goswami – Clinical Psychologist, Tata Memorial Hospital, Mumbai: interviewed by Lucy Selman, 4 April 2005. Length of interview: 11 minutes.

Dr Goswami has been a clinical psychologist with the palliative care team at Tata Memorial Hospital, led by Dr Muckaden, for seven years. Here she talks about how she became interested in palliative care, visiting Cardiff University for palliative care exposure and now looking to do the diploma course there. She discusses what attracts her to working in the field, on a personal level, and the differences from counselling other patient groups. Particular difficulties she encounters in her work are the collusion of patients’ families and denial. Depression affecting quality of life, anxiety, suicidal ideation and feelings of worthlessness are common amongst patients. She deals with such problems by encouraging positive, open communication, giving options, truth-telling, listening and coming up with ways to keep patients occupied in order to lift their mood. She talks of one particular case which inspires her – an 18-year-old girl who was helped tremendously by being allowed to voice the anxiety she hid from her family, who were not disclosing her diagnosis, and discussing the future openly with Dr Goswami.    

Ms Hamarla Gupta – Founder, CanSupport, Delhi: interviewed by Liz McDermott, 11 November 2004.

In this interview Hamarla Gupta speaks about how she became involved in palliative care through her own personal journey which started in 1986 when she was diagnosed with Hodgkinsons Lymphoema. The differences between the way cancer was treated and spoken about in Canada was in stark contrast to her experiences of stigma when she returned to India. In response to these personal experiences, Hamarla Gupta started to develop cancer patient support services. She describes the struggles at first to raise funds from family and friends and the resistance she met from some of the medical establishment. For six years, she provided cancer patient support services in two cancer hospitals. Then a pain and palliative care clinic at the All India Institute of Medical Sciences was established and she was able to collaborate with an anaesthetist who recognised the importance of emotional support to patients with advanced cancer. During this time she began to work with Ruth Woolridge and they developed a homecare programme for patients with advanced cancer. She talks about the battles to overcome problems with morphine availability, medical training and the huge numbers of people who need care. The homecare programme currently has expanded to four teams with doctors, nurses and counsellors that operate out of different centres in Delhi. She speaks of the ways in which the homecare services ‘stretches the boundaries’ of palliative care by, for example, providing basic dry foods, transportation assistance or medical aids. In the future, Hamarla Gupta believes the services CanSupport provide should be available at a national level through the already existing public health system.

Dr Rakesh Gupta - Santokba Durlabhji Memorial Hospital and Medical Research Institute, Rajasthan: interviewed by Lucy Selman, 14 March 2005.

Dr Gupta, who currently works as a surgical oncologist at the private Santokbha Dulabhji Memorial Hospital in Jaipur, Rajsthan, has had an interest in palliative care since meeting a WHO representative sponsored by Macmillan in the early 90s. In 1993 he spent ten weeks training in palliative care through the Macmillan Relief fund at the Oxford International School of Palliative Care and centres in Sheffield, Chelmsford and London. After this he continued to work at the medical school in Udaipur, Rajasthan, taking voluntary retirement as social professor in surgery in 2000, since when he has been working in the private sector. He was an American Cancer Society university scholar in 2002. Although he would have liked to work solely in palliative care he has had to continue to work as a surgical oncologist for financial reasons, but continues to work as a palliative care activist through the NGO he founded in 2004/5, the Rajasthan Cancer Society. The Society was founded to reach out to cancer patients who don’t ever reach state cancer centres (estimated to be 50% of patients). Here he talks about political problems and frustrations facing those working in palliative care in Rajasthan, such as lack of resources, especially state funding and support and trained staff. He speaks of the work of his NGO, which works closely with district administration, media, other NGOs and healthcare workers to educate and raise awareness. He recommends that funds are tracked more closely to prevent palliative care funds being misspent on costly cancer treatment equipment. With respect to the future, Dr Gupta advocates working with medical colleges, district hospitals and primary and secondary health care in the community. The data from the National Cancer Registry in Bangalore estimates that there are 25-30,000 new cancer cases in Rajasthan per year, of which 70% will be advanced cases, which makes palliation a number one priority. Nationally, he sees the incorporation of palliative care into the medical and nursing schools’ curriculum to be a major goal, and argues for an evaluation of how states’ palliative care-directed funds are spent. Finally he discusses particular issues of importance in Rajasthan, which has a poor socio-economic population, difficult to access tribal areas, a high rate of illiteracy, a health-service focus on communicable diseases and a growing AIDs problem.

Mrs Savita Jadhar – Medical Social Worker, Tata Memorial Hospital, Mumbai: interviewed by Lucy Selman, 4 April 2005. Length of interview: 15 minutes (with Savita Goswami)

Savita Jadhar is the medical social worker with the palliative care team at Tata Memorial Hospital, Mumbai, led by Dr Mary Muckaden.. Here Mrs Jadhar talks about becoming involved with the palliative care team when the paediatric side of their work started in 2002, after working with the rehabilitation of adults at Tata since 1992. Her main tasks are counselling, identifying needs and resources, assessment, evaluation mediation and advocacy for patients. She sees 3-4 patients a week through the palliative care paediatric OPD, which runs twice a week. With young children the parents’ concerns are the primary issue, especially worries about prognosis, pain and symptom management and what to expect in the future. Many patients live outside Mumbai and she sees them only once; if they are local there is more team involvement. For older children disclosure and family communication are major issues. Mrs Jadhar talks about her reservations before joining the team and the difficulties of working with children. In the mid-80s when training there was no palliative care element in medical social work, although they now have social work students who come for placements with the team. Savita Goswami agreed that palliative care issues were also lacking in her clinical psychology training. Mrs Jadhar finishes by recounting the story of a patient who particularly inspires her, a labourer who died ten years ago but whose wife is still in touch with her for advice and support.  

Sister Jyothi – Nursing sister at Holy Cross Hospice, Perumpadappu, Ernakulam District, Kerala: interviewed by Rosemary Mingins 13 Feb 2005. Length of interview 8 minutes.

At the age of nineteen Sister Jyothi entered the convent. There she trained as a nurse and this was followed by three years training to be a religious sister. She was a sister in a hospital for several years before doing her community health work studies. She then specialized in community health nursing and worked as a social worker in Mavelikara for nine years. There were fifteen different centres there, each helping 150-200 people.There was a Self-Help Group and Sister Jyothi worked with the women there. A year ago she was asked to work for the first time with the terminally ill at the Red Cross Hospice where she is very happy to be working now.

Dr Anjum Kahn - Pain Clinic, Bhagwan Mahaveer Cancer Hospital and Research Centre, Rajasthan: interviewed by Lucy Selman, 14 March 2005.

Dr Kahn works as an anaesthesiologist at the Bhagavan Mahaveer Cancer Hospital, a 120-bed specialist trust hospital in Jaipur, Rajasthan. Here she talks about how her MD in anaesthesia led to an interest in pain management, especially where it is ignored by other specialties, such as when patients are past the curable stage. Palliative care does not have its own department and Dr Kahn along with one other doctor are the only staff with an interest in palliative care, although neither have formal training. A quarter of the hospital’s care is provided free of charge, but almost all palliative care is free, as families are reluctant to spend any remaining funds on patient treatment when no cure is being offered. The hospital is one of two or three cancer centres in Rajasthan and was the first with available morphine; however, procurement is difficult owing to the bureaucracy of applying for a regular licence and transit permits. Dr Kahn goes on to talk about the conference day on pain management and palliative care planned for 8 April 2005, co-organised with the American Medical Association with the aim of educating physicians on end-of-life care. A Rajasthan-born physician currently working in New York was to lead the event, replicated at 4 centres in India, and doctors were invited from radiotherapy, oncology and anaesthesiology departments and all medical colleges in the state. There is resistance, however, to palliative care: it is conceived to be a depressing area to work in and there is no monetary gain. She mentions the growing but neglected problem of AIDS, and talks about her own patients, whose psychological problems, she says, are overshadowed by their pain. Patients travel to the hospital every month for a renewed morphine prescription, or go to see a local government health official who faxes the hospital confirming the patient is still alive. In the future the department would like to expand its OPD and be able to offer better wound care. Dr Kahn would like to take a qualification in palliative care. Finally, Dr Kahn talks about the lack of awareness of palliative care in Rajasthan, and the fact that people do not consider it important to care for those who are terminally ill.

Sister Aleya Kattakayam - Ghandi Hospital and Secunderabad and  St Ignatius Health Centre (Hospice) Andhra Pradesh State: interviewed by Michael Wright, 2004. Length of interview 22 minutes.

Sr Aleya was born in Kerala, one of 10 children, of which she and another sister are nuns. She entered the world of health care and for many years worked as a hospital administrator. In January 2000 Sr Aleya was diagnosed with advanced breast cancer. She speaks of the pain of that diagnosis; of her lack of preparation; of the impact on her family; and of her uncertainty. As she left home to undergo surgery, she was supported by both fellow Catholics and those from other religions as they prayed for her and accompanied her. She recalls her treatment, the side effects of chemotherapy and the impact of her hair loss. As she regained strength, she determined to work within palliative care and support others facing similar trauma. St Ignatius Health Centre (Hospice) was originally a dispensary which now incorporates a 10 bedded hospice open to patients with a range of conditions. Most are abandoned by their family. Sr Aleya speaks of her role as a caregiver as patients prepare for death; of the questions that are asked; and the needs that are experienced. Turning to the future, she outlines plans to raise funds and to open a drop-in centre at the hospice.

Dr Cherian Koshy – Medical Director, Trivandrum Regional Cancer Centre:   interviewed by Lucy Selman, 12 November 2004.  Length of interview 34 minutes.

Dr Koshy is the Head of the Palliative Care Deptartment at the Regional Cancer Centre in Trivandrum, Kerala. Here he talks about the inception of the department in 1984, when it was a small clinic dispensing oral morphine, and how it has developed since then. He talks about the 2 voluntary organisations which support the department, raising money for a patients’ welfare fund and providing psycho-social support. He also discusses the training programmes for nurse they run and plans for an accredited training course. Finally, he outlines the functioning of the centre, its current needs, past successes and problems faced. 

Dr Manjula Krishnaswamy – Honorary Medical Director, Jeevodaya Hospice, Chennai: interviewed by Lucy Selman, 24 January 2005.  Length of interview 33 minutes.

Dr Krishnaswamy is the Honorary Medical Director at Jeevodaya Hospice just out side Chennai. Here she talks about the opening of the hospice homecare and education service in 1990 and the hospice inpatient facility in 1995. She discusses the training programmes they run for nurses and the foundation courses in palliative care for medical staff. As someone involved in increasing access to morphine in Chennai she provides some background to the process, as well as talking about the successes and problems encountered by the hospice. She also discusses the spiritual support offered to patients, their treatment and personal problems which arise. She outlines their plan to open a day care and outpatient service, and to increase awareness of palliative care through the work of the Tamil Nadu Association of Palliative Care.    

Dr Suresh Kumar – Director of Institute of Palliative Medicine, Medical College, Kerala: interviewed by Lucy Selman, 14 January 2005.  Length of interview 45 minutes.  Also interviewed by Michael Wright, 15 February 2004, length of interview 1 hour, and, by David Clark 23 January 2003.

Dr Kumar describes his background as one of five boys in a lower middle class family where his parents were both primary school teachers. He speaks of his ideals as a young medical student and tells how many students lose their idealism and social commitment as they become conforming members of the medical profession. Some students become involved in social activities, politics or trade union activities during their training and manage to hold on to their earlier beliefs. Interested in the social aspects of medicine, Suresh spent time in a mission hospital and then considered a Sociology Fellowship in Delhi but declined due to the funding being below subsistence level. He eventually became interested in anaesthesiology and pain relief, and established a working relationship with Dr Rajagopal. Suresh then tells how his interest spread to palliative care and how he trained at Cardiff after being offered a post by David Frampton at Chelmsford to help raise the necessary funds. He goes on to outline how the Pain and Palliative Care Society was founded (1993); how a palliative care clinic was established in the medical college hospital; how the NNPC was founded in 2001; and how its successes outstripped all expectations. The service became a WHO Demonstration Centre (2001) and many people have been trained in Kerala. Suresh believes this community model can be integrated into other resource poor regions of the world. He closes by outlining the psychosocial and spiritual elements of the service and suggests there may be issues to address before the spiritual dimension is fully articulated. 

In his second interview, Dr Kumar discusses the changes in palliative care in northern Kerala. He explains how palliative care has moved out of the institution and into the community via the NNPC network, with coverage of 60-80% reached in northern Kerala (1% of the total population of India is covered by the NNPC network). The NNPC groups now offer a mixture of long-term care for chronically ill patients and palliative care for those with incurable diseases, representing a public health approach to palliative and long-term care. Close collaboration with social organisations and the government is underway, with the NNPC offering advice and expertise in the development of a community-based support system for government hospitals in Nilambur, Malappuram district. For Dr Kumar, the NNPC is fundamentally ‘a popular movement to support and develop better care for all those who cannot afford it.’ He goes on to discuss quality of care in the NNPC model, pointing out that as the number of patients rises, so too does the number of community participants. The NNPC approach, he says, offers the patient the maximum possible in terms of social and psychosocial support. He argues against the traditional view that a team of professionals is required in palliative care: a multidisciplinary team can instead be a group of local people with skills, experience and expertise, and the ability to identify when they require additional support, with the professional expert playing the role of facilitator and trainer. A future focus will be to develop further these roles of lay person and professional. Dr. Kumar also discusses specific recent problems they have encountered, particularly tensions resulting from the displacement of the professional from the centre to the periphery in the community model. He gives an overview of the workshop on community participation in Manjeri in December 2004, held with the idea of using palliative care as an entry point to discuss broader development issues and the socio-political context of community healthcare. The workshop raised many issues regarding the concept of community participation and the most appropriate model of palliative care in resource-poor settings. Finally, he talks about the NNPC’s future plans in advocacy, facilitation, documentation and research into the social impact of the NNPC movement.

Dr Kalwar Ashtok Kumar - Cancer Pain Clinic, Acharya Tulsi Regional Cancer Treatment and Research Institute: interviewed by Lucy Selman, 18 March 2005. Length of interview: 34 minutes.

Dr Kumar is the only doctor with any palliative care training at the Acharya Tulsi Regional Cancer Centre and Research Institute in Bikaner, Rajasthan. [The hospital director was also present at the interview and makes comments towards the end.] The hospital has been a government cancer centre since 1999 and they see 6000 new patients and 40,000 follow-up patients a year. In 2001, Dr Kumar did the six-week foundation course in palliative medicine at IPM in Calicut (Khozikode), since then they have been running a palliative care OPD and have had access to morphine from WHO. In 2000-2001, WHO conducted a research project looking at pain assessment in different forms of cancer at the centre. Dr Kumar sees 7-9 patients and also prescribes 10-12 patients with morphine every day, six days a week. Dr Kumar talks about how the service is run, with inpatient support from a missionary hospice for the poor run by nuns, with medical back-up from the hospital. There are 2-3 patients at this hospice at any time are palliative care patients, and patients are admitted when their families find it hard to care for them, though most families want patients to die at home. They also visit rural health centres on a monthly basis in order to prescribe morphine and teach wound care. The centre’s focus is on pain relief, with some psychological/ social support provided by informally trained, retired volunteers, who come in on a weekly basis. The most common forms of cancer are head and neck (25% of all patients), and breast and cervical (50% of female patients). As it is a regional cancer centre the government finances instruments and medical staff but not infrastructure or drugs, which NGOs help with. Dr Kumar and the centre’s director report the main difficulties faced as being lack of staff, time and financial support. Future plans include a separate ward for palliative care patients.

Sister Leonarda Lakra - Public Health Nurse CanSupport Home Care Team
New Delh: interviewed by Rosemary Mingins 13th February 2005. Length of interview 8 minutes.
                       
Sister Leonarda Lakra joined the Ursuline Congregation of Tildonk after leaving school and on completing her novitiate she first did her nurse training and then she became a public health nurse in Kolkata. On completion of her post-graduate nursing there she was assigned to the health teaching staff of the Diocese and subsequently became a public health tutor at nursing school where she taught for ten years. After this she was transferred to Delhi and worked in the resettlement colonies within the Archdiocese of Delhi. It was after working there for two years that Hamarla Gupta contacted her and asked her if she would join their palliative care home care team Cansupport and she has worked with them since 1998.

Dr K S Lal – Medical Director, Pain and Palliative Care Society Clinic, Vazhakulam: interviewed by Lucy Selman, 1 February 2005.

Dr Ronald Lalthanmawia – Programme Director, Christian Medical Association of India: interviewed by Lucy Selman, 11 March 2005 (with Dr Joe Varghese).

Dr Moira Leng - :interviewed by Michael Wright, 11 February 2005. Length of interview: 33 minutes

Dr Stanley Macaden - Head of Palliative Care, Bangalore Baptist Hospital, Bangalore: interviewed by Lucy Selman, 4 January 2005.  Length of interview 31 minutes.  Also interviewed by Michael Wright, 2004  Length of interview 17 minutes.

Dr Macadan speaks first of his background: how he comes from a Christian family of doctors (his father worked in a mission hospital for nearly 33 years) and how he followed this tradition and studied Medicine at the Christian Medical College, Vellore. He undertook further training in the UK before returning to India in 1978 to take up a position in Bangalore Baptist Hospital – a 160 bed acute general hospital -  where he has been ever since. Prompted by a desire to provide holistic care, the palliative care support team was introduced to the hospital in 1995, the outcome of a retreat. Encouragement came from a variety of sources including the Christian Medical Association of India (CMAI), Gilly Burn and Robert Twycross. Home care began in 1998.  The palliative care team is made up of 2 doctors, 2 nurses, and a chaplain/ social worker. Referrals usually come from colleagues within the hospital or the city, or by patient self-referral. After accepting mostly cancer patients, the team now cares for patients with a wide range of conditions, including HIV/AIDS: the latter a stigmatized group which requires a lot of support. Stanley tells of his role within CMAI and his input into education and training for teams of staff from mission hospitals. Around 350 mission hospitals form the CMAI (protestant) network, an organization which also includes the medical schools of Velore, Ludhiana and Miraj. Finally, Stanley speaks of the place of spirituality in India and its meaning for both patients and members of the palliative care team.

Alice Mathew – Volunteer, Neighbourhood Network in Palliative Care (NNPC), Nadavayal, Wynad : interviewed by Lucy Selman 2005. Length of interview: 20 minutes

Alice Mathew is a volunteer with the NNPC group in Nadavayal, Wynad, and talks here about how she became involved in palliative care and in setting up the NNPC group. Her mother has cancer and she speaks about taking her to Trivandrum Regional Cancer Centre for treatment. She also talks about why home visits are needed, e.g. ignorance of family members about cancer may lead to neglect. Finally she talks about fundraising for the NNPC group and the pressures of time on a volunteer and housewife.

Shajan Mathew – Volunteer, NNPC, Nadavayal, Wynad: interviewed by Lucy Selman, 2005. Length of interview: 10 minutes.

Shajan Mathew is a volunteer with the NNPC group in Nadavayal, Wynad and a lecturer in physical education at a local college, St Mary’s College in Sulthan Bathery. Here he talks about the community in which he works and how volunteering has affected his life. 

Mr T Monanasundaram - :interviewed by Michael Wright, 12 February 2005. Length of interview: 27 minutes

Dr Mary Ann Muckadan – Medical Director, Tate Memorial Cancer Hospital, Mumbai: interviewed by Lucy Selman, 4 April 2005. Length of interview: 32 minutes.

Here Dr Mary-Ann Muckadan, Professor of Radiation Oncology and Officer in Charge of Palliative Care at Tata Memorial Hospital in Mumbai, talks about her work. She describes her background of 21 years working at the hospital, and setting up the service in 1996. They offer multi-disciplinary care for inpatients and outpatients as well as home care 6 days a week (running since 1998). Since 1999 they have also been running an annual education programme (1 month course from doctors and nurses; 10/7 days for medical staff, social workers and volunteers). The aim is for there to be one trained person in each district of Maharashtra. On the team there is Dr Muckadan (working 70% in palliative care), 2 full-time doctors, 1 full-time nurse, 1 part-time nurse specialising in paediatrics, 2 full-time homecare nurses, social workers, occupational therapists and nutritionists through the ‘Stoma’ organisation, and 20-25 volunteers. Volunteers work in the hospital and also make home visits, providing emotional support and help with communication, particularly important as in India may people are intimidated by doctors. Home care is nurse-led; a nurse attends with a social worker, bringing a doctor if necessary, and two teams alternate. Dr Muckadan talks about the problems faced by patients, most of whom want to stay at home but who are transferred to a hospice if there is no carer or a difficult home environment. The hospital has about 15, 000 visits a year and 2000 new patients. Morphine is available and cheap but Dr Muckadan discusses the difficulty of obtaining it outside of Mumbai and the ‘myth’ of morphine abuse. At the hospital they have 3 categories of patient: private (40%), general charging and general non-charging (60% in total). Patients are assessed by the medical social work department. Dr Muckandan talks about how her position as radiation oncologist helps with awareness-raising and increases referrals from other departments. Since 1999 she has been involved as an advocate for educating medical students and health workers in palliative care, and since the implementation of the National Cancer Control Programme awareness of the need of palliative care has been rising slowly. The most common cancers seen are head and neck and cervical; the biggest problem for most 90% of patients is finances. Family collusion is a major issue, and a study they conducted in the department showed they could increase the percentage of patients who know they have advancing cancer from 33% to 63% by counselling family members to allow them to tell the patient. Many elderly patients defer decisions to their children and do not want to know details of their condition. The service successes include being able to provide holistic care, education programmes and the large number of volunteers. In the future they aim to open a palliative care department, advocate to improve access to morphine in the rest of the state and conduct more research.     

Deepa Muthaiya – Chair of DEAN Foundation, Chennai: interviewed by Lucy Selman, 25 January 2005.  Length of interview: 61 minutes.

Here Deepa Muthaiya talks about how she first became interested in palliative care through reading Sogyal Rinpoche’s ‘The Tibetan Book of Living and Dying’. She gives the history of the Foundation’s work, from her initial concept to founding a trust and launching the service. She discussed their homecare services, training programmes and contribution to changing the narcotic laws of Tamil Nadu. Several case studies are discussed, raising issues such as stigma, awareness-raising and the use of alternative therapies. Ms Muthaiya talks openly about how palliative care has affected her own faith, and the importance of spirituality and religion to her patients. Finally, she talks about the Foundation’s successes and obstacles, particularly finding funding. 

Dr Krishnan Nair – Consultant Clinical Oncologist, Palliative Care Dept, Trivandrum Regional Cancer Centre: interviewed by Lucy Selman, 29 January 2005.  Length of interview: 52 minutes.

Here Dr Nair, one of the first physicians to work in palliative care in India, discusses the founding of the Regional Cancer Centre in Trivandrum in 1981. A palliative care service started in 1986 with help from training by Kathleen Foley at Sloan Kettering Memorial Hospital. Morphine became available from the early 1990s and in 1996 nurse Thankum went to the U.K. for training. Dr Nair discusses the staffing and training problems the RCC encountered, with 4 UK- trained physicians moving to other specialities or not utilising the skills learnt abroad (nurse Thankum being the exception to this). Dr Nair suggests that the further development of palliative care services at the RCC was hindered by the conflict of interests of different groups. The RCC now provides good home care in collaboration with 2 voluntary organisations, but the level of palliative care at the hospital is, he says, not very high. He goes on to talk about what palliative care in India needs in order to take off: primarily the training of more generalist healthcare providers and the spread of the palliative care message through undergraduate programmes. With respect to palliative care, the role of the RCCs should be only training, since their focus is on educational activities and the provision of state-of-the-art treatment. Dr Nair finally talks about his current role as the Director of the private Amar Institute of Medical Sciences and his plans for a palliative care ‘village’ as part of the new campus.         

Dr Namrata – Medical Officer, Shanti Avedna Sadam, Delhi: interviewed by Lucy Selman, 11 March 2005.

Dr. Naveen Rudolf Rodriguez - Palliative care physician, Kidwai Hospital and St John’s Medical College, Bangalore: interviewed by Lucy Selman.

Dr Naveen talks here about his work in Bangalore at Kidwai Hospital and St John’s Medical College, where he recently started working with the palliative care team. He describes his initial calling to palliative care as something intimately tied to his own spiritual quest as a Christian, and a project he did on spirituality as part of a course in Calicut, Kerala. He talks about his counselling role at Kidwai hospital pain clinic and the place of religion in patients’ lives, and how he came to work at St John’s a month previously. At St John’s palliative care is offered as an addition to the pain control service, with postgraduate students assisting in running day care and an OPD. They also run awareness raising programmes to counteract the ignorance and stigma which still exist. He goes on to talk about the differences between working in Bangalore city and Kerala and the training of volunteers at Kidwai and in Calicut. He discusses the role of volunteers at Kidwai in providing counselling and social support for patients, such as the provision of clothes. Morphine availability and prescription is covered, as well as the problem of providing continuous care in Bangalore. He talks about the importance of awareness raising and spiritual awareness in palliative care and emphasises the need for joint action between palliative care services rather than rivalry between them. 

Dr Matthews Numpeli - Programme Executive, Neighbourhood Network in Palliative Care, Malapurram: interviewed by Lucy Selman, 12 January 2005, length of interview 1 hour 16 minutes.  Also, interviewed by Michael Wright, 2005.

Dr Numpelli tells of his background as a member of a middle class family with 4 brothers and 1 sister. His father was a teacher and education figured prominently in the family. As he entered medical school he retained an interest in politics and became involved in political activities, opposing plans to privatise medical colleges. Holding fast to his principles, he was interested in community medicine and found himself at odds with the culture of medicine until he undertook a student placement in palliative care. Finding a niche which suited his interests and beliefs, Matthews took the training course at Calicut and was eventually appointed Programme Executive for the NNPC in Malpurram. He goes on to speak of the ways in which the NNPC scheme is owned by the community and how volunteers have come forward in great numbers. He tells how education was provided for members of the community and how from small beginnings a comprehensive programme was devised which incorporates a wide range of modules. A supportive community then became an empowered community. More than 150 groups have now been trained and a70% coverage achieved. Given this concept and the willingness of people to care for members of their own community, Matthews can see no limit to its benefit and effectiveness.

In this second interview, Dr Numpeli explains how the NNPC’s approach originated with the observation that one of the clinics that had been set up was thriving where other clinics weren’t, and that this clinic was run by ‘a society of common people’ rather than medical staff. Palliative care hence became a social issue rather than a purely medical one, and with volunteer training provided by Calicut the NNPC developed rapidly. The number of patients in Malappuram rose from 700 in 2001 to 3000 in 2004. In 2001 there were 7 clinics; there are currently 20, with 200 patients being visited every week (January 2005). The basic NNPC objectives Numpeli identifies are to be a cost effective method of providing palliative care and to empower local communities to look after their own patients. He describes how the NNPC groups are set up and function and the advantages of volunteers being locally based, particularly when raising funds. In Malappuram, 100,000 local people participate in raising 95% of funding, mainly through small donations. Dr Numpeli also discusses how the programme has changed since its inception, especially in terms of the role of volunteers, who now run the programmes and provide homecare for patients with all painful conditions, not just terminal. Finally, Dr Numpeli talks about the community participation workshop held in Manjeri in December 2004; future plans for the training of government staff and the development of the ‘Kerala Model of Health Care.’   

Dr Ooman Ranjit Mathew and Dr Molly Mathew - :interviewed by Rosemary Mingins, 12 February 2005

Dr Gayatri Palat – Amrita Institute of Medical Sciences: interviewed by Lucy Selman, 1 February 2005.

Prof Firuza Patel - Head of Palliative Care Service, Chandigarh Hospice: interviewed by Michael Wright , 12th February 2004.  Length of interview: 27 minutes.

In this interview, Firuza Patel tells of the formative visit of the Australian Prof Roger Cole in 1993, who introduced palliative care to the Radiotherapy Department. Despite having injectable morphine, it took a further two years to procure the first morphine tablets. Firuza tells how she came to England for training with Robert Twycross (1998) and of her placement in Shrewsbury. She outlines how the palliative care service developed from an outpatient clinic at the Post Graduate Institute (PGI) Radiotherapy Unit (1998), to a home care service (2000), and a 10-bedded inpatient hospice (2003) run in association with the UT Red Cross organization. She describes how coverage has been increased throughout the region (70% of patients travel more than 100 kilometres), how continuity of care has been established; and how supportive relationships have been established with a neighbouring Temple and an old person’s home. During 2003, 138 patients were admitted and plans are currently in hand to establish a daycare service, expand the inpatient facilities to 20 beds and establish a bereavement support group. Key among many successes is the way the service has become accepted within the community.

Dr Manisha Pradhan – Physician, Indore Cancer Foundation, Indore: interviewed by Michael Wright, 12 April 2005. Length of interview: 26 minutes.

Dr Biju Raghavan and Dr Biju Hanikaran – Post graduate students, Dept. of Pain and Palliative Medicine, Amrita Institute of Medical Sciences (AIMS), Kochi: interviewed by Lucy Selman, 1 February 2005.

Dr Rajagopal – Head of Palliative Care, Amrita Institute of Medical Sciences, Kochi: interviewed by Lucy Selman, 1s February 2005.  Length of interview: 17 minutes. Also interviewed by David Clark, 24 January 2003.

In this second interview, Dr Rajagopal talks about his move from the Institute of Palliative Medicine in Calicut and his current work at AIMS, particularly education and awareness raising among medical staff, the process of trying to get palliative care on the medical curriculum and advocacy work at state and federal levels. He discusses the benefits and drawbacks of working in a big institution, his future plans and the problems facing palliative care in India. 

Mrs Hema Ramana – Nurse, Samraksha HIV/AIDS Hospice, Bangalore: interviewed by Lucy Selman 6 February 2005.  Length of interview: 25 minutes.

Hema Ramana is a nurse at Samraksha HIV/AIDS organisation in Bangalore, which has numerous rural clinics throughout Karnataka state as well as 7 urban clinics. Here she talks about how she became involved in palliative care and HIV/AIDS work. She discusses the terrible stigma facing AIDS patients and obstructing the work of their centres, as well as the increasing need for palliative care in the field and how HIV is being spread. She emphasises the need for awareness raising and gives details of the training Samraksha provide for medical staff.   

Mr Kishore Rao – Managing Trustee, Karunashraya Bangalore Hospice Trust, Bangalore: interviewed by Lucy Selman, 5 January 2005.  Length of interview: 1 hour, 7 minutes.

Kishore Rao is the Managing Trustee of the Bangalore Hospice Trust and Karunashraya Hospice. Here Mr Rao talks about the history of the Bangalore Hospice Trust, from its foundation in 1994 and the start of the homecare service to the opening of the 50-bed hospice inpatient unit in 1999. He outlines the kind of total care provided using consultants, volunteers and counsellors. He discusses the ethical and financial problems they face, the spiritual care provided and the socio-economic background of the patients. He goes on to talk about what restricts the service, as well as their successes to date, including the state award they recently won. Finally, he talks about their successful twinning arrangements with the Shropshire Hospice and St Joseph’s Hospice, and the hospice’s needs and future priorities. 

Dr P Bhattacharya (Head of Palliative Care Division) and Dr V Rastogi (Physician)- Pain and Palliative Care Clinic, SS Hospital, Banaras Hindu University, Varanasi: interviewed by Lucy Selman, 25 April 2005. Length of interview: 1hr 15 minutes.

Dr Suresh Sanchetee - Chief medical Oncologist & Managing Director, Sanchetee Hospital & Cancer Institute, Jodphur: interviewed by Lucy Selman, 28 March 2005. Interview length: 1hr 33 minutes.

Mr Surendra Shah – Volunteer, Tata Memorial Hospital, Mumbai: interviewed by Lucy Selman, 4 April 2005. Length of interview: 36 minutes.

Dr Rosalie Shaw – Asia Pacific Network: interviewed by Rosemary Mingins, 12 February 2005.

Charlet Soundavarajan - Superintendent and Counsellor, Arulagam Hospice (HIV/AIDS), Bangarupuram: interviewed by Lucy Selman, 26 January 2005.

Dr Anuradha Sowani – Medical Director, Cipla Centre for Palliative Care in Cancer, Pune: interviewed by Lucy Selman, 7 April 2005

Here Dr Sowani talks about her career in palliative care and the work of the centre. She previously worked as a medical oncologist in the UK for 6 years, before becoming interested in palliative care after hearing Gilly Burn talk and learning of its need through her own work. She subsequently did both the palliative medicine course in Oxford and the diploma in Cardiff, and became convinced of the need to change the western models to build on the strengths of the Indian environment, such as strong family connections. The idea of the Cipla centre, which opened in 1997, is to work in partnership with family members, and one family member stays with each patient. All the 50 beds, care and drugs are provided free of cost. Training is a major component of the work they do: since 1999 they have been running monthly courses for mixed groups of about 30 doctors and nurses (occasionally social workers, tutors and volunteers attend too). Some have opened their own centres, but for nurses continual rotation of work place and lack of authority are problems. Another problem is that some private doctors don’t want to let patients ‘slip from their clutches.’ Dr Sowani also raises awareness through lectures in rural areas of the state, but the biggest publicity has been word-of-mouth from patients’ families. At the centre they have 3 full-time doctors, 2 senior matrons who also trained in Oxford, 2 social workers, numerous nurses and 80 volunteers. Volunteers provide many services, e.g. yoga and meditation, distraction therapy, gardening and creative activities. Staff are supported through counselling with other trained staff as needed. In general terms, Dr Sowani talks about the future of palliative care in India, the expansion of palliative care as a specialty but also the lack of priority it is inevitably given in a country still lacking basic health care in some regions. Being taken on board by the government and being made part of the medical curriculum would be big steps forward. AIDS remains a very sensitive area and Cipla are looking to open an AIDS-specific site in future. They believe it has to be a separate unit owing to social stigma, but Dr Sowani recognises this is problematic. She believes AIDS to be a huge national issue, and has concerns about the lack of accurate data on epidemiology. Finally, she discusses ways in which ideas and knowledge could be shared more widely with other members of the palliative care community in India, such as conferences, statements of consensus and good practice, and publishing more research and discussion papers.                    

Mr. K. Srivrnivasa – Marketing Director :interviewed by Lucy Selman, 15 January 2005. Length of interview: 4 minutes.

Mr. K. Srivrivasan is the marketing director of the newspaper ‘M/s Mathrubhoomi’, local to Wynad in Kerala. Here he talks about why the newspaper decided to fund the NNPC group’s 15-day rehabilitation workshop for paraplegic patients. The interview was conducted on 15th January 2005, palliative care day in Kerala, before the inauguration of the workshop

Sister Lalitha Teresa – Administrator, Jeevodaya Hospice, Chennai: interviewed by Lucy Selman, 24 January 2005.

Sister Nadita Teresa – Geobodia Hospice, Chennai: interviewed by Lucy Selman,

Kumari Thankam – Sister-in-Charge, Trivandrum Regional Cancer Centre, Trivandrum: interviewed by Lucy Selman, 29 January 2005.

Joby Thomas - Public relations officer and medical social worker, Jeevodaya Hospice, Chennai.: interviewed by Lucy Selman, 24 January 2005.

Dr Mallika Tiruvadanan - Head of Lakshmi Pain and Palliative Care Clinic, Chenna: interviewed by Lucy Selman, 25th January 2005, length of interview 59 minutes. Also interviewed by Michael Wright, 2004, length of interview 41 minutes.           

Mallika tells how she comes from a family of physicians and how she and her sister followed in the family tradition. She speaks of her interest in pain management, how she trained as an anaesthesiologist, and how she developed an interest in communication skills - something her colleagues found a little odd. After 2 years in England, she was frustrated when she returned home and did not at that time find the range of medicines and facilities she worked with in Britain. In 1999, Mallika’s father suffered chronic, unrelieved back pain. Distressed at his condition, Mallika took him to Calicut to be treated by Dr Rajagopal and found it a life-changing experience. She returned to take the foundation course later that year and became totally committed to palliative care. Returning to Chennai, she immediately established a clinic, referring difficult problems to Calicut for advice. From inception, Mallika’s treatment was free of charge, and in 2001, she founded a trust – the Lakshmi Pain and Palliative Care Clinic. Her intention is to make every aspect of the service free. At the moment, a modest charge is incurred for overnight accommodation since her private practice rents premises from the Sundaravadanan Nursing Home (Hospital). In extreme cases, funds are found from the trust.  Mallika has since taken the 6 weeks course at Calicut and the diploma course from Edith Cowan University, Australia. Plans for the future include a fundraising strategy, staff recruitment, the development of education courses, and wider palliative care coverage.

Dr Joe Varghese – Programme Director, Christian Medical Association of India: interviewed by Lucy Selman, 11 March 2005

Dr Geetha Vijay – Physician, Word and Deed Hospice, Edmattan: interviewed by Lucy Selman, 1 February 2005

Dr Grace Wazita, Nurse Sophi (CanSupport Homecare Team) and Kamini C. Wijeysundera (Nurse specialist from Singapore): interviewed by Lucy Selman 7 February 2005.  Length of interview 30 minutes.

Here Dr Grace Wazita talks about a patient just visited at home. Later there is a group discussion involving Nurse Sophi and Nurse specialist Kamini Wijeysundera from Singapore. They discuss the problems CanSupport faces, including problems with referral, the attitude of doctors and oncologists, traffic and the long distances covered. They also talk about the recent course in palliative care held by CanSupport, at which Wijeysundera taught, and cultural issues such as physical contact and how best to support carers.