Monthly Report, November 2000

A Report on the Training of Trainers Workshop on Psycho-Oncology held at Bangalore

One of the most difficult, yet satisfying functions of CPAA's Patient Care department is in providing counseling to patients. A large proportion of patients come to CPAA for financial help, however even relatively well-off patients find the need for advice, guidance or just a shoulder to cry on from time to time. The counselor must be sympathetic and yet realistic, guiding the patient to a rational acceptance of his condition. While this unique ability is, to a large extent, in-born, workshops and training sessions can help to identify good practices and hone natural talents to a higher level of capability besides providing an opportunity for professionals in the field to interact and exchange notes. National Institute of Mental Health and NeuroSciences (NIMHANS), Bangalore arranged such a workshop from November 13th-15th. Gitanjali Chatterjee, General Manager of CPAA's Patient Care department, attended the workshop.

The workshop was conducted by Dr. Peter Maguire, Director, Cancer Research Campaign, Psychological Medicine Group, Manchester, UK. Dr. Maguire has a great deal of experience in the field of cancer care in terms of directly handling emotional and social needs, training health care professionals as well as conducting relevant research. He also handles bereavement groups for those individuals who find it difficult to cope with the effects of a recent loss.

The workshop was attended by healthcare professionals working with patients having chronic and terminal stage diseases such as Cancer, HIV/Aids, Diabetes and Renal Diseases. The participants were psychiatrists, social workers or counselors.

The workshop used the medium of role play and group dynamics to demonstrate to participants effective training techniques for volunteers and other healthcare professionals in counseling patients who require long term medical treatment. Participants had their individual expectations in terms of their own unique needs. Agenda that had relevance in the conducting of training programs were addressed while other issues were resolved through a panel discussion.

Dr. Peter Maguire presented the findings of several research studies which indicated that healthcare professionals do not explore the real problems of patients and may resort to blocking techniques such as giving false reassurances or changing the topic. This finding is disturbing, since evidence shows that patients benefit from having their concerns elicited and treated as relevant. Those patients who have their genuine apprehensions blocked faced a higher risk of developing depression. The main reason for this blocking seemed to be an attitude among health care professionals of a fix-it or problem solving approach towards fears. In those cases where they were unable to find a solution to the patient's problems, they resorted to blocking. They were also afraid of releasing emotions that could not be controlled when breaking bad news and hence resorted to false reassurances or a fatalistic approach.

The main highlight of the program was a demonstration of how a simulated role play along with active group feedback could be used as an effective technique for imparting counseling skills to healthcare professionals. The same technique could also be used to train trainers of healthcare professionals. The elegance and sophistication of the technique would depend largely on the skills of the facilitator. He/She would need to coordinate the entire counseling/training process by encouraging honest and relevant feedback and then presenting this to the counselor/trainer and allowing him to choose an offer, try it out and test its efficacy. This promotes an attitude of openness and flexibility in the participants and it is therefore easier to drop cherished beliefs that no longer hold true. The participants were also able to witness the blocking tendency and its harmful effect on the patient, and thereby learn to check this tendency and get deeper into the feelings dimension

All the participants felt that they would be able to use these techniques in their respective organisations and were promised full support by NIMHANS in handling any problems that they might face in the initial stages.

Department Reports

Cancer Awareness Programme

Mrs. Zainab Allana and her group consisting of Mrs. Sushila Sawant, Mrs. Swati Kulkarni, Mrs. Jyotsna Sawant, Ms. Rouhie Matani, Mr. Laxmikant Naik, Mrs. Mani Irani and Ms. Sunita Sakpal continue to perform sterling service through the Cancer Awareness Programme. An Awareness Drive was conducted at B.M.C., Crawford Market Branch, for the Income Tax Department's Earnest House Branch at Nariman Point and their Piramal Chambers Branch at Parel.

During the programme held at the Income Tax Department's Bandra-Kurla branch, the group heard about the case of Mrs. Smita Bhaskar, a bone cancer patient. She and her husband who is Head Clerk at Union Bank live at Malad. Smita must travel to Mahim for her radiation treatment at Hinduja Hospital every morning at 9.30AM. CPAA undertook to provide her transportation for the treatment. Mrs. Allana received a heartwarming letter of gratitude from her friend, Mrs. Jayashree Panickar of the Income Tax Department, who had attended the talk and asked for assistance on behalf of her friend.

Similarly, Mrs. Allana's group was able to provide assistance to Santosh whom they heard about at the programme held at the Parel Branch of the Income Tax Department. His medical bills are now being reimbursed by CPAA and he has also been provided transportation to his workplace every morning, which saves him having to struggle with peak time traffic on Mumbai streets.

An Awareness Lecture was held for the 8th standard at Bombay International School. A slide included in the presentation highlights the benefits of not smoking (Longer life, No wastage of money, Healthy lives, Lower risk of Cardiac Disorder, Clean Breath, Good Sense of Taste, Healthy Environment) over smoking (Increased Risk of Cancer, Emphysema, Cardiac Disorders, Burning of money, Still births and Abortions) and asks what the viewer would choose. One child said that he would still choose smoking, but at end of the talk, he had changed his stance and went out of his way to thank the CPAA speaker for enlightening the class on the risks they expose themselves to through this habit.

Prevention and Early Detection

40 camps and OPDs were held during the month of November. Out of the 24 camps held, 8 camps were held for wives of employees of Oil and Natural Gas Commission, 2 each at Nehru Nagar, Vile Parle; Pragati, Marol, Andheri (East); Lions Club of Bombay, Chembur; Aga Khan Jamatkhana, Dahisar and Jogeshwari; Rotary Club of Deonar and Mulund and ENT Camp at Machimar Colony.

A total of 621 people, 200 males and 421 females were screened in the camps. 169 were advised follow up. One case of tongue cancer was detected.

Smt. Lila Kishanchand Shahani Clinical Diagnostic Centre

The Smt. Lila Kishanchand Shahani Clinical Diagnostic Centre screened a total of 298 patients during November. 686 tests were performed, out of which 544 were pathological tests. 2 free tests were performed. 27 sonography, 60 x-ray and 55 mammography investigations were carried out. 48 free mammographies were done during the month under the Well Woman scheme funded by KSB Pumps

Insurance

45 new policies were registered in November, bringing the total to 6615. 105 people were examined, of whom 55 had come for the first check-up and 50 for renewal check up. Rs.65,000 was disbursed towards claims made.

The Cancer Insurance Policy was started in 1994. It had been recognized that even relatively well-to-do patients find it hard to afford treatment for cancer. In contrast to treatment for other medical conditions, cancer treatment tends to be prolonged, involving combinations of surgery, chemotherapy and radiation repeatedly often over several years. Most insurance policies allow for reimbursement for a particular disease only once. The Cancer Insurance Policy, recognising the unique requirements of the cancer patient, allows for renewal of the policy annually so that the policyholder can claim benefit entitlements every year.

Since inception, 6615 people have availed of these benefits. One such person is Mrs. Soonu Chinoy who registered for the policy in February 1997. CPAA recently received a heart felt letter of gratitude from Mrs. Chinoy which is reproduced below:

"Three years ago when my friend suggested to me that I take out a cancer policy through the Cancer Patients Aid Association, I did not have the slightest inkling that one day I would be the victim of this dreadful disease. I have always been covered under Mediclaim and hence did not see the urgency of taking such a policy. But since this was one lifetime amount of Rs. 6,300 I thought I might as well be covered under such a policy.

Today I am very happy that I have been covered under the CPAA since this is a prolonged disease and medical expenses for chemotherapy and other medicines are exorbitant even after the surgery. I am grateful for the cooperation I received from the staff of CPAA in settling my claim as fast as they could, since this has relieved me from heavy financial burden.

I feel it very necessary for every individual to be covered under this policy since cancer affects people at any age and at any time. So please get yourself insured against cancer as you never know who the next victim will be."

Patient Care

At Smt. Panadevi Dalmia Cancer Management Centre

57 new patients were registered during the month of November, 25 under the Aid category, 29 under the Adoption category and 3 under the Special Adoption category. 340 patients were aided, counseled and given guidance. 100 patients availed of ambulance facilities, including 15 patients who availed of the service for long distance. 75 sets of clothes, 40 packets of biscuits and 50 boxes of Complan were distributed. 19 home and institutional visits were made. Donations amounting to Rs. 33,500 were collected and Rs. 2.35 lakhs were disbursed. Three of our patients expired during the month.

Krisanu Mandal is a nine-year-old boy, suffering from relapsed Acute Myeloid Leukemia for which he underwent treatment at Jaslok Hospital under Dr. Boman Dhabhar. The doctors have told his parents that his only chance of survival is a bone marrow transplant. As his marrow does not match that of his only sibling's, he will require an allogenic bone marrow transplant from a broadly matched unrelated volunteer donor, which is a procedure that is not performed at present in India. His parents managed to contact Prof. H. Grant Prentice, Haemato-Oncologist at the Royal Free Hospital, U.K. who has been able to identify 5 matched donors for Krisanu through the Bone Marrow Registry in UK. They were informed that the procedure would cost Rs 84 lakhs. This is a huge sum, which was not easy for Krisanu's father, an engineer with Oil and Natural Gas Commission, to find. By his determined efforts he has raised Rs. 60 lakh through donations or loans.

Krisanu flew to London on 9th November along with his mother and aunt who is a doctor. CPAA has helped in arranging free air tickets courtesy British Airways Donate a Mile scheme and is also trying to arrange for their accommodation. CPAA is providing assistance in trying to raise the balance funds required through appeals to trusts and through newspaper advertisements, besides providing moral support through counseling and guidance.

At present Krisanu is fighting for survival but with cheer and courage. One worrying factor is that we have not been able to arrange for accommodation in Central London. This is critical for the periods that he is released from the hospital, as proximity is important in case of a medical emergency and to avoid unnecessary exposure to infections. As a result precious funds are being used to pay for accommodation. Krisanu's family and well-wishers are all at present engaged in praying for his recovery and in collecting the required funds.

Chamundeshwari Patil is well known to all of us at CPAA. Chamundi came to CPAA in March 1996. She was suffering from Hodgkin's Lymphoma. Her disease had been diagnosed as being in the 4th stage. She underwent chemotherapy at Tata Memorial Hospital taking Doxorubicin, Bleomycin, Vinblastine and DTIC until December 1996 after which she was advised to come for regular follow up. She joined our Administrative department during her treatment and her cheerful nature soon endeared her to everyone at CPAA. Given her talent for computers, she was sponsored for a course at NIIT where she met her future husband, Rajesh Dwivedi. They got married in October 1998.

To crown their happiness now is the arrival of a bonny baby boy. Chamundi says that her pregnancy and delivery were more or less normal in all ways. When she had got engaged, she had talked to her medical oncologist, Dr. Tapan Saikia, who wished her well. She did not ask about the possibility of having children at that stage, but decided to let nature take it's course.

When she conceived in February of this year, both husband and wife were thrilled, but apprehensive. Her chemotherapy had made Chamundi susceptible to infections, especially respiratory illnesses. She took special care to avoid falling sick, drinking only boiled water and eating hygienically cooked food. Instead of antibiotics, she relied on naturopathy, taking steam inhalations regularly. She also took the usual iron and calcium tablets prescribed to all pregnant women today. Her gynecologist asked her to get ultrasound testing more frequently than her other patients, so Chamundi got it done every month. The first crisis came during the seventh month when the baby's weight of 900 grams was considered to be less than normal. Chamundi had gone to her mother's home after the traditional seventh month ceremony. The doctor also saw an early maturation of the placenta, which could have resulted in premature birth during the seventh month itself. Fortunately with some bed rest during the seventh month and medication to prolong the pregnancy, the baby went to full term. The baby was born by normal delivery on 14th November and has been named Vikrant Dwivedi. Congratulations, Chamundi and Rajesh!

At Tata Memorial Hospital

180 patients were aided, guided and counseled by CPAA's Halima Aurangabadkar at Tata Memorial Hospital during November. 32 ward visits were made. 180 packets of biscuits were distributed. 50 patients were given clothes. 6 kgs of sweets were distributed. 5 referred cases were helped. 95 patients were given Complan and 13 patients were given medicines.

At Bai Jerbai Wadia Hospital for Children

7 new patients were registered during the month. 718 patients attended follow up of whom 100 patients are undergoing chemotherapy. 45 patients were counseled and given guidance and 35 patients were visited in their wards. 7 group meetings regarding cleanliness and diet were organised and 10 packets of biscuits were distributed.

"Can I Help You?" CPAA's Desk at Tata Memorial Hospital's Private OPD

This month, Jennifer Quadros was able to help 185 patients, providing information on various kinds of cancers, helping 144 in filling up forms and giving medical counseling. CPAA has also provided newspapers for the benefit of patients waiting in the registration area. 216 patients made use of the facility. 15 ward visits were made and 50 gifts were distributed.

Mr. Nathu L. Patil is a patient of intestinal cancer. When he came to Tata Memorial Hospital there were already metastases to the liver. Dr. Advani therefore advised him 6 cycles of chemotherapy. His three sons had to sell their land and other resources in their hometown to raise Rs. 2.75 lakh for his treatment. The fifth cycle of chemotherapy was given on 28th November. However, there were no funds left for the last cycle and the family had decided to forgo it. On hearing their plight, Jenny intervened and took them to St. Michael Church and to IC Colony Church. Their generous contributions have now made it possible for Mr. Patil to undergo the last cycle of chemotherapy as well. It should be mentioned that both parties did not let the fact that the patient was from another community dissuade them from providing assistance.

Counseling at Cama & Albless Hospital Cancer Ward

13 new patients were counseled out of whom 3 were registered with CPAA. 9 patients were counseled and given guidance in the OPD and ward visits. 13 patients of cervical (7), breast (2), ovarian (3) cancers and lymphoma (1) were visited in the wards. Two terminally patients was referred to Shanti Avedana Ashram.

Palliative Care Unit at Tata Memorial Hospital

Mrinal Marathe of CPAA's Patient Care Department assists in counseling sessions for terminally ill cancer patients under Tata Memorial Hospital's Palliative Care unit. Our representatives attend the unit three times a week, helping to provide guidance and counseling to patients and their caregivers on how to deal with the social and psychological effects of terminal illness and how to make the patient comfortable in the last stages. 24 patients, 18 males and 7 females were counseled during the month of November. Out of these, 10 patients were below 60 years of age and 14 patients were above the age of 60. A striking observation was that 13 patients, or more than half the patients, had cancer of the Head and Neck, a reflection of the high incidence of this kind of cancer in India. This is a cancer, which is related to lifestyle patterns over 90% of the time and can be easily avoided.

Rehabilitation

The Rehabilitation Centre adopted one new patient this month. A total of 75 patients were helped. 5 cases of mastectomy were attended and breast prostheses were provided. 229 patients were given rations worth Rs. 30,790. Rs. 22,050 was spent on teachers' salaries, for patient education and vocational training. Rs. 1,04,271 was spent on patient wages and Rs. 24,700 was spent on welfare activities, conveyance and diet supplements. The Rehabilitation Centre's total income for the month, exclusive of CPAA transfer, was Rs. 8.61 lakh.

[Top]