CPAA: Cancer Patients Care, Cancer Patients Rehabilitation India

Clearing the bottlenecks in making a connection with the right specialist/oncologist, co-ordinating appointments with treatment centres, finding boarding facilities for patients from out of Mumbai, advice on hygiene and diet, stepping in with financial aid when necessary, providing nutritional supplements like Complan, helping with linen, clothing and food grains as and when it is called for, CPAA rises to every need of the patient.

Here, the less apparent needs are also addressed such as guidance on alternative therapies; help with filling in forms or the distribution of awareness literature. Our counselors reach out where few other organizations have ever considered important or necessary to extend a helping hand. Ambulance services for transportation from ones' home to a treatment centre, family support groups, playgroups and creativity classes for children-patients, co-ordinating prostheses (artificial body parts) and even rehabilitation of a patient rendered jobless due to long absence from the job or his/her family members to supplement the family income ... this assistance is rendered with humaneness and compassion.

Cancer treatment can be a huge drain on family finances, even for the relatively well off. Through whatever limited funds we have, we try to disburse medical aid to as many patients as possible. We also find sponsors, help patients network with aid-giving organizations, guide them about circulating appeals in the proper channels, and organize medicines at wholesale rates through a tie-up with chemists and pharmaceutical companies.

For patients with a good prognosis , we have an Adopt-a-Cancer-Patient scheme, i.e., we try to find sponsors who donate Rs. 50,000 every year for the treatment of their adopted patient. The money covers: post-surgical rehabilitation; transportation; economic support for patients and their families; guidance on spiritual, emotional and psychological problems faced by the entire family; accommodation during treatment and follow up.

On adoption, the sponsor receives the case history, photograph and quarterly progress reports of the patient. CPAA also arranges meetings between the two if so desired. These meetings typically take place at one of the events periodically organised by CPAA. Time and again we have observed that the rapport established between sponsor and adoptee helps the patient combat the disease better.

All donations made to our organization are exempt from Income Tax under Section 80-G of the Income Tax Act (50% tax exemption).

All other patients are placed in the Aid-a-Cancer-Patient category. Based on the prognosis and the amount and kind of medicines needed, a monthly budget is determined, and this is guaranteed to the patient for the full duration of the treatment. This budgeted amount is not paid to the patient in cash, but goes primarily towards funding the prescribed medication. CPAA has made arrangements with chemists to provide medicines at concessional rates. The social worker decides with the patient which medicines can be supplied. The patient can then collect the medicines directly from this chemist on production of the prescription certified by CPAA. We will also, on request, order the medicines, which can be collected from the association offices the next day.

Since funds are limited, CPAA social workers help to raise additional funds through appeal letters, newspaper advertisements and magazine appeals.

Money isn't the only way CPAA helps patients undergoing treatment. Patients coming from far flung locations expect to stay for 1-2 months and invariably end up staying much longer. Thus for patients who can or want to handle their own cooking, we arrange stoves and utensils for the duration of their stay.

Other necessities such as clothes, toys for children, blankets during the winter and umbrellas for Mumbai's torrential rains are also given on an individual basis.

Asif Kadar Khan is a 58 year old case of larynx cancer. His larynx was removed 5 years ago in a procedure carried out at the Municipal ENT Hospital. He used to earn his livelihood running a portable carousel merry-go-round (jhoola) for the owner. After his operation, the owner took his jhoola back, leaving Asif with no source of income. CPAA's Zakia Topiwala contacted the Nanabhoy Jeejeebhoy Charities Trust who gave a donation of Rs. 15,000 for Asif's rehabilitation. With a concession of Rs. 5,000, negotiated by CPAA, Asif was able to purchase his own jhoola. CPAA also had to intervene for him to get requisite permissions from BMC to run the jhoola in Mankhurd.

Email us, if you would like to make a donation of medicines, especially chemotherapeutic drugs, clothes, toys, blankets, umbrellas, utensils, etc.

No one enjoys being in hospital. Imagine then, if you will, how much worse it must be when you are poor, illiterate, and unable to understand what the doctor is saying in the few moments he spares you. Let's be honest. The sheer numbers our hospitals handle means that patients are often left feeling traumatized.

CPAA steps in to act as a buffer. We run a Counseling cells at: Bombay Hospital, Bharat Sevashram, Vashi, Breach Candy Hospital, Cama and Albless Hospital, Ernest Borges Home, IC Church, Nair Hospital, Nanavati Hospital, Tata Memorial Hospital, Wadia Hospital in Mumbai, and support the patients by filling in forms to reading test reports, to meeting the surgeon to understand the prognosis, recommended treatment and expected side effects and communicate this information to the family. We make sure the patients and their family, fully understand what is going to happen, so that they do not have to abandon treatment halfway due to miscommunication.

A single visit to a patient's house can be very revealing. Often it throws light on problems that a patient will never mention, but which prevent the patients and their family from concentrating on fighting the disease. CPAA's role here is to identify the problems and help solve them, so that the only trauma the patient has to confront is the disease. Over the years, we have arranged jobs for immediate family members, education and even admission into boarding school or foster homes for siblings. The social stigma of cancer sometimes prevents such interactions, with patients telling us not to visit or to park the telltale van with CPAA markings at a distance from their home. In such cases we always respect their feelings.

At time even the best of treatments and whole-hearted efforts of a team of dedicated doctors sometimes fails to cure a cancer patient and the medical fraternity is forced to say that further intervention is not possible. At such a time while some of the patients get admitted to hospices to be taken care of in their final days, some family members refer to take care of the patients at home. These patients in an advanced stage of their disease may be subjected to nausea, vomiting, constipation, diarrhea, bed sores, loss of appetite etc find it difficult to connect with doctors or care-givers.

For such cases, CPAA has set up home care teams headed by our panel doctors who visit such patients at home. The doctor concerned interacts with the family members to assist them in taking care of their dear ones at home until death. The doctor is chosen so that the patients under his or her care live close enough so that they can be contacted in the shortest period of time in case of an emergency. The doctor becomes a part of the family and besides the medical intervention, is able to counsel the caregivers and the patient as the end approaches.

Much as we would like to cover all expenses for all those who approach us, funds are limited. Therefore, what we also do is help patients find sponsors, network with aid-giving organizations, and guide them in circulating appeal letters in the proper channels. Over the years, we have established a rapport with about 20 charitable trusts who help our patients with one-time lump sum amounts towards medical relief. These include NM Wadia Charities, Pirojsha Godrej Foundation, Lotus Trust, Time and Talents Club, the Marwadi Sammelan, various churches and convents, Asra, Bagri Foundation, Dorabji Tata Trust, Asian Paints, Sindhi Society and Mahalxmi Trust. The CPAA referral acts as an introduction and establishes the patients' bonafides.

Are you a charitable organization willing to help CPAA help cancer patients? Click here.

The majority of patients coming to Mumbai for surgery or post-surgical treatment (radiotherapy, chemotherapy, etc) need a place to stay while undergoing treatment. Anyone who has had to look for accommodation in this overcrowded city knows what an impossible task it can be. And remember, these people are poor, often illiterate, and ill. CPAA attempts to fill each family's needs as allowed by their budget.

Are you looking for accommodation while you are undergoing treatment in Mumbai? Refer to our Resource Directory for a list of addresses.

CPAA assists patients and their families by providing nutritious food, biscuits, chocolate drinks, and food supplements. The Food Bank supplies rations in the form of food grains.

If you would like to make a donation to the Food Bank, click here. Donations made to our organization are exempt from Income Tax under Section 80-G of the Income Tax Act (50% tax exemption).

Sometimes, patients are asked to get special investigations (MRI, CT Scans, etc) done which may well be beyond their financial capacity. In such cases CPAA has often intervened to get the investigation(s) done free or at greatly reduced rates from various other hospitals and centres.

If you would like to sponsor a special investigation, click here. Donations made to our organization are exempt from Income Tax under Section 80-G of the Income Tax Act (50% tax exemption).

We have 15 vehicles, including ambulances, which allow us to provide free transportation to the place of treatment, in cases where the patient is too weak to travel by public transport and too poor to be able to afford anything better.

In August 2002, Dr. Furrokh B. Dhondi gave us the generous donation of an air conditioned ambulance which will help us to start a shuttle service from Tata Memorial Hospital to Dadar station. Patients who come for treatment from the suburbs can now avail of this facility which will ease their problems to a great extent.
The same ambulance can be used for transportation to other hospitals such as Wadia, Nair and Cama and also to carry terminally ill patients to Shanti Avedana,

Bandra.

In September 2004, The State Bank of India donated a sum of Rs. 7,12,487/- to us for purchase of a Mini Bus for the use of cancer patients. Seen in the picture are Shri A. Ramesh Kumar, Chief General Manager, Mumbai LHO handing over a cheque to our chairman Mr. Y. K. Sapru.

A large majority of patients coming to Tata Memorial Hospital in Mumbai for surgery or post-surgical treatment (radiotherapy, chemotherapy, etc) are from outside Mumbai. The Indian Railways offer such patients and any one attendant a 75% concession on fares. Applications also get preferred treatment when applying for reservations. CPAA then helps patients by covering the balance. We also help patients who are traveling by bus, where no concessions are available. In cases when non-ambulatory patients wanted to travel home but were too weak to undertake an arduous train journey, CPAA has intervened to arrange complimentary or subsidised airline stretcher seat tickets from Indian Airlines.

For patients requiring specialized treatment abroad, British Airways makes 2 tickets available (for the patient and one attendant) under their ‘Frequent Flyers Gifted Miles Scheme.' CPAA identifies such patients, helps set up treatment by communicating with the respective centres and ensures that arrangements have been made to cover accommodation and living expenses.

Ashish Poddar is a 25 year-old cancer patient suffering from Chronic Myeloid Leukemia (CML). He was first diagnosed in November 1995 and since then he has been undergoing chemotherapy. He has now entered an accelerated phase in the disease and conventional treatment is limited.

Recently, doctors in the US have been experimenting with a new drug in a Clinical Trial (See Infocentre/Clippings File/Blood Cancer/Complete Remission ), which is being coordinated in 5 centres in the US. These centres have been bombarded with requests for inclusion in the trial, but not a single person from India had been included so far. With the active support of Dr. S.H. Advani, Chief Medical Oncologist at Tata Memorial Hospital, he managed to get himself included in this trial under Dr. Richard Silver at the New York Hospital, Cornell.

CPAA was able to help this brave young man proceed abroad with a ticket issued by British Airways' under their Donate-a-Mile Scheme. Ms. Sarla Kohli, Director of our Bangalore branch, started the scheme in 1997 and several patients have been helped to travel abroad for specialised treatment not possible in India.

CPAA wishes to express its gratitude to the generous donation from British Airways.

If you would like to help a patient with travel assistance, click here.

Leukemia patients and those undergoing surgery need to arrange for blood, and that's not always easy. Very often, in India, even the patient's friends and family are reluctant to donate blood because of misconceptions about it causing harm. The fear of AIDS has exacerbated the situation. CPAA maintains a databank of willing donors, along with their blood groups. In an emergency, our employees have themselves donated blood. We also try to mobilize donations among the patients' community, reassuring them that blood donation is perfectly safe.

Leukemia patients also sometimes need transfusion of platelets, the blood cells that help in clotting. This involves passing the donors blood through a cell separator, which extracts the platelets in a process called plateletpheresis, delivers them to the patient, and returns the rest of the blood to the donors' body. Since only a part of the blood is actually transferred, platelet donation can be done more often than the once in six months allowed for blood donation.

Cancer surgery often requires the removal of the affected body part, which must later be replaced, so that the patient can lead a normal life. These replacement parts can be prohibitively expensive for the patients who have already used up most of their savings for treatment. CPAA helps cancer patients obtain the following kinds of prostheses:

Breast Prosthesis:

Self-image is an important part of the recovery process following a mastectomy or breast removal. Older patients also had problems of imbalance when walking and so, CPAA decided to develop low-cost, high-quality breast prosthesis in-house. Manju Gupta, Executive Director, Rehabilitation Dept., who was accompanying a relative undergoing medical treatment in New York's Sloan Kettering Memorial Hospital, investigated the various kinds of foam, silicone liquid and solid breast prostheses available, then returned and developed a prosthesis based largely on Indian material.

CPAA's economical, fully washable breast prosthesis, developed in the Rehabilitation Centre, is soft and fully washable (important in view of the hot and humid climate), gives an extremely good cosmetic appearance, and costs Rs.350 to 400 (depending on size) versus Rs.6000 for the imported models. The prosthesis is fitted at the Smt. Panadevi Dalmia Cancer Management Centre under the guidance of a sympathetic and fully qualified technician.

Chest Prosthesis:

In case of tumours of the chest, we have helped patients procure an imported prosthesis, a chest wall, which prevents the malignancy from affecting heart, lungs and other organs. The prosthesis, a Gotexnet costs Rs 57,000.

Larynx Prosthesis:

In cases of laryngeal cancer, the larynx or voice box may be removed. Subsequently, the patient is unable to talk. In the immediate aftermath of surgery, CPAA helps patients with a magic slate costing about Rs 60, which allows them to communicate without having to search for paper and pens.

We have negotiated special rates for the Provox Voice Box. This is obtained for Rs 9000 as against the usual cost of Rs 12,500. Additionally, for patients who find even the subsidised rates too steep, we have set up The Head and Neck Prosthesis Fund, which finances larynx prostheses for needy patients. In this way, every month, we help 4-5 patients obtain a voice box.

In case a patient cannot be fitted with the box for medical reasons, CPAA has helped procure a portable Electrolarynx and helped with maintenance in the form of the imported cells.

For more information pertaining to the various kinds of Larynx Prostheses available, click here.

Limb Prosthesis:

Amputation of limbs becomes necessary in certain kinds of osteogenic sarcomas. Replacements involve knee and/or total limb replacement. The imported knee replacement is superior, but expensive. CPAA has, on a number of occasions, been able to negotiate a special deal with Howmedica, a division of Pfizer, Ireland.

CPAA's Iva Das, herself an amputee, has helped a number of patients deal with the trauma of amputation. She regularly guides them to the All India Institute of Physical Medicine and Rehabilitation at Haji Ali for providing the ‘Handicapped Certificate' which helps the patient in getting jobs, Railway Concession certificates and fitting of the artificial limb. CPAA also provides crutches for patients.

Radiation Prostheses:

During radiation treatment a number of prostheses are used to protect proximal organs. These protective prostheses include:

For Brain:

Orfit prosthesis (Rs 3000)
POP prosthesis (Rs 600)

For Cheek:

Dental Prosthesis (Rs 1800)
Maxillar Prosthesis (Rs 1000)

For Throat:

Jaw Stretcher (Rs 400)

If you would like to make a donation towards providing prostheses for a cancer patient, email: manju.gupta@cancer.org.in

When CPAA first started its activities in 1969, most hospitals did not recognize the importance of volunteer counseling work that we offered. Over the past 30 years, the trend has now changed and most major hospitals now recognise the need to address the psychosocial issues of their cancer patients. In this direction, organisations such as our own have been asked to counsel patients undergoing treatment. Doctors now feel that there is a positive benefit in actively involving patients in their treatment by providing relevant information through volunteers. While every effort is made at hospitals to educate the patients on the disease, treatment, side effects, prognosis, morbidity and mortality, the patient is often not in a state of mind to absorb the information. Later when doubts surface, the patient is inhibited because he feels the doctor is too busy, the questions are too trivial or he is too embarrassed. And very important pieces of information do not get conveyed.

Our volunteers meet the patient at different stages of their treatment-diagnosis, treatment and follow up. They explain exactly what the treatment entails, its risks and benefits, cost, pain, change in appearance, hair loss, effect on social participation and professional activity, side effects, diet restrictions, care of affected parts, sexual problems. During the conversation, the patient is encouraged to open out and personal problems too are discussed. We are always careful to check with treating doctors on the information being given, so that the material is presented in an unambiguous fashion, clearing doubts along the way and in a manner that allows the patient to make a meaningful decision. A counselor must share concerns, help the patient to seek support and help and above all avoid misconceptions and erroneous advice.

The counselor's role is to give information taking into consideration the wishes of the patient and their caregiver, keeping in view their compulsions. The counselor acts as a bridge between doctor and patient and contributes by taking part throughout the course of the treatment. The ultimate decision about treatment is the patient's to make. A professional advisor with whom a close relationship is formed can be of help in a situation where otherwise the patient feels powerless to say yes or no or even ask questions.

Through the Menaxiben Shah and Rekhaben Shah Memorial trust, Richfeel is bringing in some positives to the lives of cancer patients. The trust believes in helping cancer patients face the world with the same spirit and joyful demeanor of a healthy individual. The program offers free treatment to all cancer patients in order to ensure that the damages of chemotherapy and radiology do not damage their spirit to fight. This is a clinic is conducted on the 1st Monday of every month between 3-7pm at:

Richfeel Trichology Centre
A - 1 M. R. Society Relief Road, Daulat Nagar,
Opp. Raheja College, Next To Kirti Computer Santacruz - (W)
Contact: 26494799 / 66964206 / 66964207(Ms. Tahera)