Prelude: Mar 2003. Two doctor colleagues worried by the ever increasing lines of patients with diseases in advanced stages, at premier hospitals of Delhi; sit down to think; on what can be done. Both question the efficacy of existing campaigns on health and diseases.
Decision: They will talk on health and diseases directly to women, who actually run the activities of each family, which is the nucleus of the society.
What to talk: They will talk, discuss and bring the empowerment from within of each woman, to protect herself and her family from diseases and detect any disease at the earliest. An internally empowered woman can bring health and happiness to the whole family and society.
What exactly on health: Breast cancer is increasingly spreading its menace in India. Breast has a multidimensional role in a woman’s physique and life. This cancer has become number one cancer to affect women in many parts of our country. 70-80% of breast cancers get diagnosed in stage 3 or 4 which is advanced stage of any cancer. Breast cancer can easily be caught early by any woman if she exactly knows how to check her own breasts at regular intervals. But breast, and health issues associated with it are very sensitive to talk to in the community. They want to win the confidence of every woman. So they chose this as a challenge. They prepared the battle plan.
First dent to be made identified; so journey began, challenges came their way and they reached at: Dec 2011. More than 130 workshops. Around 17,000 women (Delhi, NCR and Orissa) are already empowered to protect themselves, their families, relatives and friends from breast cancer. They are a phone call away to facilitate everything if someone has developed or has any abnormality in her breasts. But they also emphasize that 70%-90% breast lumps are non cancerous. But any change or any abnormality should be reported without any panic. They organize workshops which are exclusive women affair, conducted by doctors, extremely innovative. Emphasis is on empowerment from within. The number of workshops and empowered women is growing. Their effort is being appreciated. Women are approaching them with changes in their breasts and are getting benefits. Women are approaching them for more and more workshops.
Coming together of like-minded people: In the early part of 2008 close friends came together and they register a national level NGO by the name “Swaasthya Sanchar”. Domain of their effort now extends to adolescent health, mental health, maternity and child health, heart diseases, oral and other forms of cancers. Preparation has started in these fields. They will go to people with these concerns, soon.
Aims and Objectives of Swaasthya Sanchar:
(1) Dissemination of awareness regarding Health, Lifestyle and Well Being to the society as per the need and suitability. The basic idea is to bring empowerment from within.
(2) Preparation and distribution of Health and Educational materials. Considering the holistic concept of “Health”, there is a need to improve the appropriate and useful knowledge-base of the masses. So this society will work to deliver appropriate educational content in various Indian languages using appropriate media at regular intervals. Society will also use innovative methods to encourage the masses to bring the knowledge gained into day-to-day practice.
(3) Provide medical facility and medical treatment along with available medicines free of cost or at concessional rates to the socially and economically weaker classes or community.
(4) Provide preventive, promotive, curative and rehabilitative services to society.
(5) Automation of health education materials for better dissemination into the society. Teaching, Learning, Evaluation and Updating activities in the domain of Medical and Paramedical professionals will be supported at various levels of education and specialization.
(6) Creation of specific knowledge-base on prevalence and spread of diseases by use of IT at places of healthcare delivery. Creation of database on the availability of expert healthcare professionals and healthcare facilities for the benefit of sufferers.
(7) Organize seminars, lectures and other modes of communication to educate people on health, bring awareness on well being and better life style management.
(8) Creation of facilities to develop, adapt and disseminate knowledge of health and well being in electronic media to reach out to masses.
(9) Provide educational, vocational facilities and training to improve the economic status of the marginalized sections of society.
(10) Publication and distribution of printed material on health, well being and life style management at every level at regular intervals and issue fortnightly/monthly/quarterly news letters and health journals.
(11) Establish medical and paramedical; educational, treatment and research centers for contribution towards improvement of health care infrastructure of our country.
Following are the efforts that have already been undertaken by us.
1. National level BSE (Breast Self Examination) document is created after reviewing almost all documents and electronic media available worldwide and then consulting the Directors (most) of Regional Cancer Centres (RCCs) of India as well as Indian Council of Medical Research.
2. A script for the video (which is an excerpt) of above said BSE Document has been made. This has been converted into a video in English. This is available on youtube.com. This is in 4 parts. More than 11,622 complete viewing of this content has been reported on the web. It has more than 140,461 hits (all 4 parts combined) and 31,578 effective viewing. (log on to youtube.com and search for “indian breast self examination in youtube’s search field”. Please see all the four parts.)
3. This video is available on DVD and quicktime format. This can run of cellphones, ipods and other portable video players. This gets distributed at workshops.
4. This script has been converted to 8 Indian and 1 foreign languages and getting converted to all other Indian languages.
5. We have set up a complete home studio for creating media products. Everything is home made with good quality. We are in the process of making video of actual BSE (accurate, scientific and complete). Nothing like this is available in India.
6. Powerpoint presentations have been made in English, Hindi and Oriya.
7. Sketches of BSE with Indian faces have been prepared by a professional artist.
8. Mannequins of torsos are available for the purpose of explanation of the anatomy and technique of breast self exam while conducting the workshops.
9. Silicone breast models have been imported from USA. These models have different size nodules in them so that the technique of BSE can be correctly and completely understood with the help of DVDs which are available with them. These models also aid in perfecting the skill of clinical breast examination which helps in thorough examination of the breasts of women by a doctor. We are in the process of making these available in a large scale in India.
10. Models have been prepared using beads representing different lump sizes so that women get an idea of the lump sizes which they can detect following the method of breast self examination.
11. Electronic educational materials have been procured from major international organizations working in this field.
12. Our efforts got reported in HINDU, MAIL TODAY and on national TV and Radio channel. We got recorded to appear on KALYANI, a programme for women which is aired by all the Doordarshan Kendras in India. Women’s magazines are ready to carry us exclusively across the country for workshops on early detection of breast cancer.
13. We are in touch with most of the organizations in this field to learn their positive as well as negative points. This is to strengthen our efforts.
14. We have conducted workshops for around 17,000 women at more than 130 locations in Delhi, NCR territory, UP and Orissa. These locations are Major Government offices, Private offices, Schools, RWA, Private gatherings, Teaching Institutions, NGOs etc. This is ongoing. Many more workshops are already planned. The places where workshops have been conducted, lady's have learnt the accurate and most effective method of BSE, taught in most lucid manner. Monthly e-mail and telephonic reminders are sent to women who have attended our workshops so that BSE becomes a part of their healthy lifestyle. If any lady shows her concerns after practicing BSE; consultations, investigations and follow ups are provided/facilitated as per the requirements. At the end of each of the workshops feedback evaluation is taken from the participants to improve the quality of the programme. More than 28 abnormal breast lumps have been detected by primary or secondary use of our workshops and electronic content. A girl aged 22 from a premier institution in Delhi, whose mother has been affected by breast cancer; has breast lump. She is being followed up on monthly basis. There are many such stories. We motivate high risk individuals to go for screening mammogram. Organizations like CRPF, NTPC are motivated for screening mammogram of their lady employees.
15. Unfortunately teaching the importance and technique of BSE is not done well by others, not even by eminent Cancer Physicians and Surgeons. This is very unfortunate. Eminent Cancer Physicians and Surgeons tend to talk more on breast cancer rather than breast self examination's need and the proper technique. We excel at teaching and making sure that our participants learn BSE, do BSE and detect lumps, if there is any. Then they call us and we facilitate their investigations, treatment and follow up as per need. Of course we are good at counseling.
16. Women have detected lumps after viewing our youtube video and DVD. We have helped these women for their investigations and other medical helps.
17. We have been contacted by one international organization for collaboration with them to spread the message of early detection of breast cancer.
18. We do not conduct "cancer runs" and "annual major events". These activities bring home the message that cancer should be caught early and treated efficiently, but they do not actually teach how to do it. To beat breast cancer; door to door, organization to organization campaign is needed. High risk individuals have to be identified and BSE must be taught to all the women and they should be encouraged from all angles to practice BSE regularly. They must report any abnormality at appropriate centers.
19. We have recorded stories of women with breast cancer. These stories are distributed and played in workshops (wherever possible).
20. We have our own laptop, LCD projector, speaker for conducting workshops. Organizations also arrange these for us if they can.
22. Our efforts in reminding women to practice regular BSE have been highly appreciated. Various competitions and prizes are being planned to be offered to ladies those who do BSE and detect lumps.
23. Susan-Komen, a leading campaigner of breast cancer in USA have recognized our work and done certain needful works with us.
24. We are in the process of making full mannequins to demonstrate BSE.
List of workshops:
How workshops are organized and conducted:-------
1. We write to organization heads and follow them up to fix the date, time, venue and make necessary arrangements. We visit the site to make sure that the workshop could be strictly a closed door all women affair, audiovisual arrangements could be up to the mark and sitting arrangements are convenient for learning and back demonstration. Adequate circulation of information on this event is done in collaboration with the organization.
2. We use powerpoint presentation of appropriate language as per the choice of the participants.
3. Presenter is always a lady doctor.
4. We coax organizations to arrange for refreshments for participants. We also request them to arrange for gifts for ladies those who learn the method very well.
5. Its a closed door all women affair.
6. To start the workshop; usual greetings and simple introduction and briefing is done. This is followed by a friendly Pretest to judge the existing knowledge of the participants on breast and breast cancer.
7. The Presentation Proper includes: ---
(a) Complete interactive session with powerpoint presentation. This deals with importance of knowing about breast cancer, emotionality of ladies' position in the family and her own physique, normal anatomy of breast etc. Normal breast anatomy is told in a lucid and careful manner considering the sensitivity associated with it. It is stressed that normal breast is lumpy to touch and one should not panic as 70-90% of lumps in breast are non-cancerous, but any abnormality must be reported. Enumeration of risk factors of breast cancer and how those can be modified is done. Method of doing Breast Self Examination (theory) is dealt in minute details.
(b) Video of Breast Self Examination is shown.
(c) BSE audio (excerpts of stories of women combating and winning over breast cancer is played).
(d) Video of Mammogram is shown.
(e) COMPLETE DEMONSTRATION OF ACTUAL AND MOST ACCURATE PROCEDURE OF BREAST SELF EXAMINATION IS DONE.
8. Question Answer Session.
9. Back Demonstration is done to evaluate whether the participants have learnt the method of examining their own breasts.
10. Distribution of prizes.
11. Distribution of brochures.
12. Post test is done to evaluate the overall knowledge of participants on breast cancer.
13. Feedback evaluation and personal communication details are collected for reminder system to work.
14. Thanks giving and concluding remarks.
15. Women ask (in private) their individual problems to the doctor and get necessary answers or are referred to appropriate places for logical and needful procedures to be done.