A brief introduction to CEDSE:
Registered in the year 1990-91, CEDSE is functioning from its hilly location in Kudupu (currently marked as ward number 36(Padavu East) in the Mangalore City corporation limits). The vision of a just, inclusive, humane peaceful, ecologically harmonious society guides our organizational mission and interventions focused on marginalized groups and facilitators who work among them.
Three interrelated dimensions of our work from the very start have been Study/research, Non-formal educational/training interventions, Participatory actions both individual and collective to support quest for justice inclusive of issues related to gender and environment. Welfare and therapeutic interventions such as Palliative care unit and Care Child Cancer Programme (CCCP) launched by CEDSE in October 2013 has to be seen within this wider context.
Our research interventions incorporate not only primary and secondary studies to understand social realities in general but also those that aim at understanding and analysing the situation of the person and groups that we work with from time to time. In collaboration with other organizations – educational institutions, government departments and other non-profits we have undertaken research studies to explore the situation of specific excluded social identity groups (such as women and women farmers).We have extended support to organizations/institutions (inclusive of social work educational department) to evaluate effectiveness of their institutional mechanisms and programmes through a participatory process which involves various stakeholders.
Our non–formal educational interventions include participatory training methodologies designed and used to facilitate acquisition of required competencies among various stakeholders such as personnel of N.G.O’s as well as government, faculty and students of educational institutions especially social work departments and other organizations. In this direction the participatory training modules have been developed as well as compiled by CEDSE. Such modules designed in collaboration with subject level experts and teams have been published jointly with other organizations and have been used across geographies by many facilitators involved in justice (inclusive of gender justice) related work. We have contributed articles and chapters for publication in books and magazines to contribute to the process of deepening social sensitivity (e.g. gender) and ecological sensitivity inclusive of sustainable development.
Our justice related actions include facilitating need based organization among the marginalized inclusive of women farmers and contributing through programme evaluation and personnel competency building to further strengthen the organization building work undertaken by other non-government organizations. Offering guidance and hand holding support to the individuals, particularly women in their struggles for justice through dialogues, negotiation and where necessary by opting for legal remedies or court actions is another intervention adopted by CEDSE. We have extended our support to those in distress who approached us to overcome the hurdles they faced in acquiring appropriate documents (BPL ration card, disability certificate, income certificate, birth certificate, death certificate, adhaar card so on) and tapping relevant government scheme. Six persons in distress especially women survivors of injustice have been supported to mobilize funds required for their house construction.
Collaboration to develop justice related polices: Contributing to the participatory process of developing gender equity related and capacity building policies/ programmes for the specific organizations working at the national, regional and district levels has been part of our justice related work. In this connection our work with the government departments at the district and state level include:
- Being part of the state government task force/committee on evolution of gender sensitive trainer learning materials (DPEP, Karnataka state)
- Developing gender equity related training materials and conducting training sessions for government personnel engaged in preparation of district level Human Development Reports (2015-17) in Karnataka;
- Writing a chapter on Gender Equality and Human Development for the Human Development Report, Karnataka state by incorporating related research findings and inputs from the government officials and other experts involved in the process;
- Contributing to the participatory process of evolving gender equity indicators as a part of the Karnataka state effort at evolving sustainable development goal related indicators;
- Serving on district level committees on the subject of addressing the issue of declining sex ratio(Department of Health and Family Welfare, Dakshina Kannada) and Town Vending Committee (Mangalore City Corporation) have enabled us to contribute to the process of taking gender justice and human development agenda forward.
Welfare and therapeutic interventions: Our welfare interventions include childhood cancer programme and palliative care service (operationalized through a functionally autonomous unit of CEDSE – Ave Maria Palliative Care). Our therapeutic intervention cover workshops on healing therapies by engaging experts from both traditional and modern streams of practice such as NLP (Neuro-Linguistic- Programming),SUJOK and Pranic Healing. Providing direct guidance and emotional support to survivors of abuse and injustice has been a regular feature of our service. Where necessary we have been referring cases to other experts for psychological counselling, legal advice, and medical and other support services.
Care Child Cancer Programme (CCCP): A welfare oriented initiative of CEDSE
Initiated in August, 2013 by CEDSE (Centre for Development Studies and Education (R.), the Care Child Cancer Programme has been sustained to this day, thanks to all our collaborators -Hospitals, doctors, advisors, donors, well-wishers and team members.
Programme start: Heeding to a request from Mr. Harold Naveen D Souza, one of our collaborators cum advisors, we decided to study the need for our intervention in the area of childhood cancer. We along with another collaborator cum advisor of CEDSE Prof. Clement D Souza (who unfortunately expired 4 years ago) met renowned paediatrician Dr B.S. Baliga who was highly committed to the cause of children and heading the Paediatric Unit of the Government Wenlock hospital then (which also had a child oncology section). Dr. Baliga enabled us to understand the gaps in health services that are available to children affected by cancer such as the high cost of investigative procedures needed to diagnose cancer which were not available in Mangalore, the struggle of parents in economic distress especially from distant lands to bear their out of pocket expenditure, debt burden the parents of the child had to incur before and after the child is diagnosed with cancer, the high death toll among children which is also linked to late identification of cancer and absenteeism or the inability among the low wage/income earning parents to adhere to the prescribed treatment protocol for their children. Dr. Baliga also spoke about the emotional turmoil the parents of affected children’ experience and the need for emotional support and counselling. We also met a few cancer affected children and their care givers present in the ward and the Wenlock Hospital authorities to discuss the need for our intervention. Convinced of the need for intervention we decided to initiate the Care Child Cancer Programme (CCCP) at the end of Dec. 2012.Mr. Naveen D Souza took on the major responsibility of fund mobilization for this cause. In our latter meetings Dr Baliga assisted us in designing the procedures that need to be adhered to in order to ensure transparency and accountability in financial matters thus laying a sound foundation for the operation of the CCC programme by transacting a MOU between CEDSE and the Wenlock Hospital (29th, October, 2013).
Since then CEDSE has extended the CCC programme to two more hospitals in Mangalore namely KMC, Attavar by transacting an MOU on17th September, 2016 and with Fr. Muller’s Hospital, Kankanady, on1stMay2016. Since 2021 as the Wenlock Hospital has a tie up with KMC, Attavar, and all the affected children who seek admission in the former are sent to the latter, our service covers two hospitals only namely the KMC, Attavar and Fr. Muller’s, Kankanady. Thanks to the dedication and hard work of Mr. Naveen DSouza, we were able to sustain the Care Child Cancer Programme from the start to this day.
Initiative to develop a corpus fund for CCCP: In the year 2018, Mr Herald Moras a retired bank official who was working in Qatar, returned to Mangalore and joined our team at the behest of Mr. Naveen D Souza. Since then he has been offering his time and effort on an honorary basis for the cause of children affected by cancer and striving to establish a corpus fund to ensure continuity and sustainability of the programme.
Services offered by CEDSE in relation to Care Child Cancer Programme: The types of services we offer under the umbrella of childhood cancer programme are as follows:
- Counselling – emotional support and guidance: Cancer is curable and more so childhood cancer say the oncologists and others associated in dealing with the issue. With advanced therapies available and new breakthroughs expected to address the issue and testimonies of cancer survivors there is much hope that the rate of survival among the cancer affected children may increase across geographies, inclusive of India.
However the present reality is that cancer (adult as well as childhood) continues to be a dreaded disease across many developing countries such as India. Reports of increasing cancer afflictions and death due to cancer amongst diagnosed persons inclusive of rich and the famous (i.e. film actors), children youth and adults, long duration of treatment and its adverse effects on the body and mind of those affected (i.e. loss of weight, hair loss, irritability, cognitive impairment), recurrence of the disease even after the patient is declared free of the symptoms, makes people fear the disease. As a result finding oneself and one’s close relative especially child being diagnosed with cancer provokes much distress and anxiety resulting in high levels of stress both among the children and the care givers – parents and other family members. Lives and livelihoods among the marginalized sections are the worst affected identification of cancer during late stages (when it is has already spread to the vital organs of the child) results in loss of hope and feelings of guilt in the parents. Added to this distress is the need to visit the hospital at regular intervals and long periods of stay in child oncology wards. The anxieties and fears of parents gets transmitted to the affected child and her/his siblings and other members of the household.
Realizing this CEDSE is sending a trained professional (either a social worker or clinical psychologist with a post-graduate degree in the respective field of practice) to visit the wards on a daily basis to listen to the affected children, provide the much needed emotional support and guidance to the children as well as the care-givers. She spends time with the patients those referred to CEDSE for financial support and other forms of assistance, as well as others affected children and their care givers found in the ward. Listens to them and provides them support to deal with their anxieties and fears. As the number of children present in the wards (in- patients) and visiting the hospitals as outpatients vary in number, on an average this service is provided to 10-12 children every week in two hospitals covered by us at present.
Only those children who are referred to CEDSE for assistance are provided regular follow-up service which involves phone calls to enquire about child’s progress and remind them of their appointment with the oncologist so that adherence to treatment protocol is ensured. She provides them handholding support when the affected child loses her/his battle for survival.
Though the outcomes of this activity which includes personal and online counselling are not visible to the eye and often not measurable, it does provide beneficial effects. It contributes to raising a sense of hope and resilience among the care givers and older children. It contributes to create a positive ambience for all children including the very young in the hospital wards and their homes. Handholding support during the times of crisis including death of the child does have positive impact. We consider this service as our major contribution through CCCP.
- Financial assistance to the affected children: Under the CCC Programme, CEDSE renders financial support to affected children referred by the doctors as their care givers are facing economic distress. Our social workers also interview care givers of such patients to study their socio-economic conditions and the amount of support we could offer to each child at a time, depending on the availability of funds. From the very start of the project, it was clear to us that we should not generate a sense of dependency on us for funds. Keeping this in mind, partial assistance is provided by CEDSE to care givers of patients during times of crisis, to cover out of pocket expenses, travel allowance for bringing the child to the hospital at prefixed time from distant places, costs of pre-diagnosis (investigation) procedures and some medical costs which are not covered under government schemes.
Some facts about the affected children who have been and continue to be provided financial assistance is given in the form of tables and diagrams
Number of children who have availed financial aid over the years:
Affected children who have received financial aid – yearly basis (Table I): Totally 240 cases of children were referred for assistance to CEDSE during the 11 year period beginning Oct 2013 and ending June 2024.Affected children numbering 229 have been offered financial support during their period of treatment which lasts from a few days to months and years. Out of these children 217 are from the BPL (Below Poverty line) card holding families and 12 are from Above Poverty Line (APL) households in economic distress. Table one provides data on the number of children who have received financial assistance on an yearly basis
Table I: Number of financially assisted children –year wise
(From October 2013 to June -2024)
| Number of children covered by f financial assistance | ||||||
| Year | New | Continued | Total | Girls | Boys | Total |
| From 2013 Oct To Mach-2014 | 02 | 00 | 02 | 01 | 01 | 02 |
| From April-2014 To March-2015 | 23 | 01 | 24 | 11 | 13 | 24 |
| From April-2015 To March-2016 | 06 | 13 | 19 | 09 | 10 | 19 |
| From April-2016 To March-2017 | 30 | 07 | 37 | 14 | 23 | 37 |
| From April-2017 To March-2018 | 24 | 20 | 44 | 09 | 35 | 44 |
| From April-2018 To March-2019 | 19 | 26 | 45 | 17 | 28 | 45 |
| From April-2019 To March-2020 | 22 | 22 | 44 | 13 | 31 | 44 |
| From April-2020 To March-2021 | 25 | 18 | 43 | 11 | 32 | 43 |
| From April-2021 To March-2022 | 18 | 19 | 37 | 13 | 24 | 37 |
| From April-2022 To March-2023 | 24 | 19 | 43 | 18 | 25 | 43 |
| From April-2023 To March-2024 | 25 | 10 | 35 | 20 | 15 | 35 |
| From April-2024 To June-2024 | 11 | 17 | 28 | 17 | 11 | 28 |
| Total | 229 | 172 | 401 | 153 | 248 | 401 |
Number of financially assisted children -229
Hospital wise classification of affected children who have received financial aid from CEDSE (Table II)
Hospital wise data of children covered reveal that out of 229 children provided financial assistance during the reported period; only 39 are from the Government Wenlock hospital, the first hospital that CEDSE had transacted MOU with in October, 2013. The majority numbering (152 children) are from KMC Hospital, Attavar which has a full pledged department of child oncology with an oncology specialist. Since The Government Wenlock Hospital has an agreement signed with KMC in January 2015 to address the needs of children who are referred by the latter to the former and from April, 2020 onwards and refers all the old and new cases to KMC, we had to stop our intervention in Wenlock Hospital. However we continue to cover some affected children who were referred to us by the Wenlock Hospital and who are undergoing treatment at KMC. Fr. Muller’s Hospital, Kankanady was the third hospital that we had an MOU with in May 2016. We have provided financial aid to 48 children from this hospital over 8 years ending June 2024. We have offered one time grant at the request of child oncology department, KMC, Manipal to an affected child, who had to be administered expensive drugs in order to save his life.
Table II: Number of affected children referred and provided financial assistance by CEDSE – Hospital wise from October 2013 to June 2024
| SL. No | Hospital | Number of affected children | |||
| Assisted | Not assisted | Total referred | |||
| 1 | Wenlock | 30 | 9 | 39 | |
| 2 | K.M.C | 150 | 2 | 152 | |
| 3 | Fr. Muller’s | 48 | – | 48 | |
| 4 | Others (KMC, Manipal) | 1 | 1 | ||
| 5 | Total | 229 | 11 | 240 | |
Out of the cancer affected children referred to us numbering 240 children, only 11 children, whose case studies were recorded, did not avail financial assistance due to various reasons such as parental decision to seek discharge from the hospital concerned or death soon after referral.
Social identity characteristics of affected children who were referred to CEDSE for financial as well as other forms of assistance:
Gender wise distribution of children who have received financial and other forms of assistance: Out of 240 children referred to us for assistance 148 are boys and 92 are girls. Out of the 240 children 229 children (141 boys and 88 girls) have received financial support from CEDSE-CCCP (Diagram I).
Diagram I: Gender wise distribution of children who have received financial aid:
Data provided in table -II also highlights the fact that more boys have received financial assistance on a sustainable basis compared to girls from April -2014 to March-2024. Only during the last three months (April-2024 to June-2024) girls are more.
Clearly boys outnumber girls among those who are referred and accessed financial support continuously. Does it mean more boys than girls are affected by cancer among the marginalized groups or does it mean internalized son-preference tends to make parents who are struggling to earn their livelihood, neglect girl child’s health care needs? Further investigation is needed to answer these questions. However the data available with us points to the need for evolving a gender sensitive health care response to address the issue of cancer by identifying and focusing on early symptoms of cancer among both girls and boys in resource poor households.
Age wise classification of children referred to us for financial and other forms of assistance (Table III): From the very tender age of 7 days to 18 years we have covered varying number of children from different age categories. Children up to 14 years only were covered during the early years of our service. In recent years we have been extending financial support to children and teenagers up to 18 years in keeping with some National Laws and International legal mandate which has offered objective reasons to classify population up to 18 years as children.
Table III: Age category wise classification of affected children referred to CEDSE
| Age category wise distribution of affected children | ||
| Age category | Number | Percent |
| Infants : One year and below | 10 | 4.2 |
| Above one year up to 3 years | 46 | 19.2 |
| Above 3 years up to 5 years | 30 | 12.5 |
| Above 5 years up to 10 years | 80 | 33.3 |
| Above 10 years up to 15 years | 58 | 24.2 |
| Above 15 years up to 18 years | 16 | 6.6 |
| Total | 240 | 100 |
Religion wise classification of children referred to us for financial and other forms of assistance (Diagram II): The CCCP of CEDSE has covered predominantly children from the Hindu religious category numbering 205 children out of 240 referred (85 per cent), followed by Muslims 30 children (13per cent) and a small portion of the recipients of financial aid are Christian (only five – just 2per cent). Further investigation is needed to find out the extent of prevalence of cancer among the children of various religious as well as caste categories across geographies to discover and understand the extent of cancer and conditions such as food practices and environmental factors that are associated with cancer among the children.
Diagram 2: Religion wise classification of children referred to us for financial and other forms of assistance
Classification of children referred to us based on the type of cancer diagnosed: The facts presented in table IV reveal that the majority of the children (167 out of 240) referred to us for financial assistance and other forms of assistance suffer from Acute Lymphoblastic Leukaemia (ALL) – which is known commonly as blood cancer. This is in keeping with the known fact that ALL is the predominant type of cancer among the children not only in our geography but across all geographies-regional, national and international. Hodgkin’s lymphoma was diagnosed in a relatively larger number of children (28 out of 240 children) referred to us for aid.
Table IV: Classification of children referred to us based on the type of cancer diagnosed:
| Diagnosis of the Disease | Number of patients | Expired | Total |
| Acute Lymphoblastic Leukaemia (ALL) | 167 | 52 | 115 |
| Hodgkin’s lymphoma | 28 | 06 | 22 |
| Ewing’s sarcoma tumour | 05 | 05 | 00 |
| Medulloblastoma | 01 | 01 | 00 |
| Neuroblastoma | 05 | 02 | 03 |
| Ovarian cancer | 01 | 00 | 01 |
| Thalamic glioma | 01 | 01 | 00 |
| Chronic myeloid leukaemia (CML) | 03 | 02 | 01 |
| Brain tumour | 06 | 02 | 04 |
| Call+ve pre cell leukaemia | 01 | 01 | 00 |
| Hepatoblastoma | 02 | 01 | 01 |
| Juvenile myelomonocytic leukaemia (JMML) | 01 | 01 | 00 |
| Lip polysaccharide (LPS) | 01 | 00 | 01 |
| Primary immunodeficiency disorders | 02 | 01 | 01 |
| Retinoblastoma | 04 | 02 | 02 |
| T cell Acute lymphoblastic | 02 | 01 | 01 |
| Wilms tumour | 04 | 02 | 02 |
| Thalassemia | 02 | 00 | 02 |
| Aplastic anaemia | 02 | 01 | 01 |
| Bronchopneumonia | 02 | 01 | 01 |
| Total | 240 | 82 | 158 |
Time period wise classification of number of children referred for assistance to CEDSE: In some cases treatment had been discontinued after the child was free of symptoms and was continued when remission occurred.
Table V: Time period (Two years) wise classification of number of children referred for assistance to CEDSE
| Time period wise referral of child patients to CEDSE | ||
| Two year time period | Number | Percent |
| April- 2013 to March- 2015 | 22 | 9.2 |
| April-2015 to March-2017 | 42 | 17.5 |
| April-2017 to March-2019 | 50 | 20.8 |
| April 2019 to March 2021 | 47 | 19.6 |
| April -2021 to March 2023 | 42 | 17.5 |
| April 2024 to 30th June 2024 (one year three months) | 37 | 15.4 |
| Total | 240 | 100 |
The time period which resulted in maximum number of referrals for assistance was April 2016 to March 2019 followed by the period April 2019 to March 2022 (Table V). As the latest time period constitutes only one year three months, we cannot use this period to make comparative analysis.
Extent of Financial aid offered to the affected children referred to us during the 11 year period (Table VI): Extent of financial assistance provided to 55 per cent of the affected children does not exceed Rs. 20000/- followed by nearly 26.2 per cent who have received between Rs. 20001/- to Rs. 40000/- and slightly above 16.2 per cent children who have received between Rs. 40001/- to Rs. 80000/-. Those who have received Rs. 80001 to Rs. 100000/- are numerically very small – that is 6 persons (2.6 per cent) only.
Table VI: Extent of Financial aid offered to children during the 11 year period
| Amount Provided | Number of Children | |
| Number | Percent | |
| Up to Rs. 20000/- or below | 126 | 55 |
| Rs. 20001/- to 40000/- | 60 | 26.2 |
| Rs. 40001/- to 60000/- | 26 | 11.4 |
| Rs. 60001/- to 80000/- | 11 | 4.8 |
| Rs. 80001/- to 100000/- | 2 | 0.9 |
| Above Rs. 100000/- | 4 | 1.7 |
| Total | 229 | 100 |
Expenditure incurred in relation to Care Child Cancer Programme (CCCP) Oct., 2013 to 30th June 2024:
Totally an amount of Rs. 85, 31,307/- (Rupees Eighty five lakhs thirty one thousand and three and seven only) has been incurred in connection to CCP (Table VII). Out of this the amount spent on financial aid to the affected children and few adults is Rs. 56, 39,712/- (Rupees Fifty six lakhs thirty nine thousand and seven hundred twelve only). Towards personnel and administrative costs an amount of Rs. 28, 91,595/- (Rupees twenty eight lakhs ninety one thousand and five hundred ninety five only) has been incurred. In short slightly above 66 per cent of the funds have been spent on direct financial support to children and nearly 34 per cent has been used to cover personnel and administrative costs.
Table VII: Summary of the expenditure incurred in relation to CCCP to the cancer affected children and others
| Number of affected children who were provided financial assistance | 229 |
| Total amount spent on providing direct financial assistance to affected children (11 year period) | 55,74,007/- |
| Amount of assistance provided to adults (cancer patients and others in distress – 10 persons) | 65,705/- |
| Total amount spent in direct financial assistance during the 11 year period to 229 affected children and 10 adults totally 239 persons | 56,39,712/- |
| Total amount spent on personnel and administrative costs associated with CCCP | 28,91,595/- |
| Total expenditure incurred on CCCP | 85,31,307/- |
- Other services offered and activities conducted for cancer affected children in childhood oncology wards:
Besides offering services such as counselling, guidance, regular follow- up to ensure adherence to treatment protocol and financial assistance related work, CEDSE has also offered the following services to the affected children:
- Parents of two children namely master Nithesh and Master Rajesh K from distant places were provided the palliative care service(free of cost) offered by Ave Maria Palliative Care, a functionally autonomous unit of CEDSE which ensures pain management and end of life loving care to persons across all age groups.
- Events such as toy distribution and distribution of packets containing nutritious nuts (Badam and walnuts whenever donors contribute the same) have been conducted by us in oncology wards. Christmas cum New Year celebrations have also been organized for the children in the wards. These events were sponsored by our team members (Mr. Naveen DSouza and Mr. Herald Moras). Other festivals could be organized if sponsors come forward to join hands in this effort. Conducted by CEDSE for affected children present in child oncology wards –an event namely colouring the drawings by supplying them sheets with line drawings and colour pencils, evoked a lot of joy among the children who could participate actively. An event involving affected children and care givers conducted at CEDSE campus, Kudupu was a joyful celebration for all concerned. More such events need to be conducted in wards to facilitate the creation of a more positive, joyful ambience for the affected children and their care givers.
Cancer survivors and deceased among the affected children referred to CEDSE from Oct., 2013 up to June 2024
Cancer survivors among the affected children: Up to June 2024 there are as many as 158 (66 per cent) child cancer survivors out of 240 children referred to us for financial and other forms of assistance since Oct., 2013. As per the information available with us at present nearly two thirds of children assisted by us are survivors up to June 2024.Compared to the survival rate among cancer affected children from economically marginalized families in particular and across all economic social groups in general inhabiting developing countries, the relatively high survival rate among children supported by us is a positive sign for all of us. Has our collaborative role in relation to affected children which is complementary to the role played by the medical team led by oncologists in the hospitals contributed to the rise in number of survivors among children referred to CEDSE? Positive feedback from oncologists who have been referring affected children for assistance to us Dr. Harshaprasad, KMC, Attavar and Dr. Nishitha Shetty, Fr. Muller’s, Kankanady does indicate relevance of the services provided by CEDSE in this regard (Please see feedback Blog in our website).
Number of deceased among the affected children who were referred for assistance to CEDSE-CCCP: We have lost to cancer as many as 82 (34 per cent) children out of 240 referred to CEDSE during the 11 year period of our intervention as per the information available with us. Every child has right to live and the inability of a significant number of children to win the battle for survival remains a matter of concern to all of us.
Time (2 years) period wise distribution of number of deceased among the affected children assisted by CEDSE-CCCP is provided in Table VIII. The number of deceased among the children referred to us were relatively more during two of the time periods (April 2015 to March 2017 and April 2019 to March 2021) inclusive of the COVID years which made access to hospitals very difficult for the children from the financially poor families. Children, who have lost their life to cancer among those who are referred for assistance to us from April 2021 onwards, are comparatively smaller in number – a sign of hope for all concerned.
Table VIII: Two year time period wise distribution of number of deceased among the affected children referred to CEDSE-CCCP
| Two year time period wise number of deceased Children | ||
| Two year time period | Number | Percent |
| April- 2013 To March- 2015 | 10 | 12.2 |
| April 2015 to March 2017 | 19 | 23.2 |
| April 2017 to March 2019 | 14 | 17.0 |
| April 2019 to March 2021 | 19 | 23.2 |
| April 2021 to March 2023 | 12 | 14.6 |
| April-2023 to June 2024 (One year three months) | 8 | 9.8 |
| Total | 82 | 100 |
- Assistance to adults in distress:
CEDSE has offered financial assistance to 10 adults in situation of extreme distress due to cancer (eight adults) and other life threatening injuries and ailments (two adults).
On the positive side the higher survival rate (currently nearly 66 percent) among the children who are referred to us (we do not have information regarding all those who have been provided counselling services in the oncology wards visited by our professional social worker), positive feedback from the care givers and oncologists treating them, and advice from our collaborators and supporters provides us motivation to continue the childhood cancer programme. Beyond all our stated concerns one overriding reason that strengthens our intent to continue the childhood Cancer programme is the fact that a civilized society has to ensure right to life with security and dignity for every child. However small our reach, we have an obligation to do so as individuals, groups and organizations. We express our gratitude to all those have extended their hand of partnership to enable us to carry forward this initiative.
Positives and issues of concern with regard to Care Child Cancer Programme (CCCP):
Issues of concern that are faced:
- The prevalence of incidents of death rate among child oncology patients is a matter of major concern to all concerned. Even among the 229 children who have received varying amounts of financial assistance from us along with emotional support services as many as 82 (34 percent) up to now have succumbed to the disease.
- The child cancer disease burden appears to be rising along with other NCD’s (Non communicable Diseases such as heart, kidney, and lung. Nerve, bone and mental stress related) both among the children and the adults. When such diseases affect adults in the family, children also suffer many adverse effects.
- The question of relevance of our service. In recent years there have been government schemes such as Arogya Karnataka introduced by Government of Karnataka on 2-3-2018, with goal of providing universal health coverage to all residents of the state and Ayushman Bharat introduced by the Government of India on September 23, 2018 to help the economically weaker section of society who needs healthcare facilities. Both the schemes have been integrated under a co-branded name called “Ayushman Bharat-Arogya Karnataka” with 60 per cent contribution from the central government and 40 per cent from the state and are being implemented in an assurance mode from October 30, 2018. This scheme includes adult and child oncology among the diseases covered. Affected patients from the Below Poverty Line (BPL) households are eligible to get Rs. 5, 00,000/- per family per annum and those from Above Poverty Line (APL) families are eligible to claim 30 per cent of the costs after diagnosis and hospitalization. In this context, making the service more relevant and sustainable remains to be a challenge because of the Increasing financial burden that the families with a child undergoing treatment for cancer have to bear within the currently available health care system despite the availability of government schemes.
- Advanced diagnostic procedures therapies/medicines to treat children with cancer have yet to reach all the children irrespective of their parental economic status, across all geographies (rural, urban, forward and backward), as a result of the global health care economy that is based on the logic of excessive profits.
- Comprehensive public health policies, laws, programmes, budgetary allocations, adequately funded schemes and effective, efficient, transparent and accountable institutional mechanisms to provide holistic health care to children and adults inclusive of those suffering from cancer have not yet been adequately mainstreamed.
- No comprehensive research studies are available to provide evidence of the outcomes of varied types of interventions by hospitals and NGOs directed at ensuring survival, safety and security for children affected by cancer.
Our future plans:
- To build a competent core team of at least 3 professionals – 2 professional social workers and one clinical psychologist to effectively address the mental health care needs and concerns of affected children and caregivers in child oncology wards. This could contribute to the process of addressing issues of fears, anxieties and stresses associated with the disease by creating a positive healing ambience and ensure more effective and efficient execution of all services that we render.
- Include one more hospital to increase coverage to at least 3 hospitals in Mangalore taluk limits that have child oncology wards with a paediatric oncologist on board.
- Design and conduct public awareness events (such as campaigns) in collaboration with concerned hospitals, government departments and educational institutions to spread knowledge about the symptoms of childhood cancer and factors contributing to the increasing incidents of cancer among the children. Such campaigns may contribute towards early identification of the disease among children and nurture a positive social environment for cancer survivors by reducing dread of the disease. Such initiatives reinforce the belief that cancer is curable, more so childhood cancer, and earlier the identification, the better are the chances of cure. Public awareness events planned and conducted in collaboration with various stakeholders are important to mobilize concerted action and public participation to promote right to survival with security and dignity for not only cancer affected but all children across social groups and geographies.
- Organize events in collaboration with the hospitals and other non-profits and age specific emotional competency building sessions for affected children as well as care givers to cope with the grief and distress the disease brings.
- Keep track of the evidence based work being done in other systems of medicine such as AYUSH (Ayurveda, Yoga, Unani, Siddhi and Homeopathy), Naturopathy and so on and disseminate information about the same so that the care givers can make an informed choice of the system/systems they wish to opt for to treat the affected child and enable her/him to regain the energy/vitality (immunity) and mental stamina that they have lost to cancer and its treatment.
- Study the best practices available across geographies among the non-profits to respond to the cancer affected children and their families. By incorporating insights gained by us in operating the Childhood Cancer Programme and relevant components of evidence based best practices, we can make our interventions more effective and thus move towards evolving a replicable model of service for affected children.
In conclusion it could be said that while collaborative and collective efforts being made by the governments and the civil society organizations to ensure life with safety, security and dignity for children at various levels of geography local, regional, national to the global (i.e. WHO),there is much more that needs to be done. Developing and operationalizing comprehensive/holistic public health policies, laws, institutional mechanisms which incorporate childhood cancer and other life threatening including mind threatening diseases that affect children and adults is an agenda that needs to be taken forward much more rapidly – for the children of today cannot wait for tomorrow to lead healthy and happy lives.
CEDSE- Care Child Cancer 