Survivorship& Rehabilitation

Our Mission

"It’s not enough to add years to life, it is equally important to give quality of life to the added years!"

Indian Cancer Society Rehabilitation Centre was started in 1963 for non-medical services to benefit underprivileged cancer patients and survivors. They are taught tailoring, bag making and printing.

The aim is to keep them engaged in some activities so that they remain motivated which enables them to complete their treatment. It allows them to be with others who are also undergoing treatment and form social bonds with shared experiences and also learn a new skill.

UGAM - Support Group of Childhood Cancer Survivors

Ugam is a voluntary support group which has been formed by Childhood Cancer Survivors from the After Completion of Therapy (ACT) clinic of Tata Memorial Hospital, inspired by the survivors from across the globe with whom they interacted during the International Society of Pediatric Oncology ( SIOP ) meeting in October 2007. Ugam was formally launched on 7th June 2009, first sunday of June celebrated as Cancer Survivors Day across the world..

UGAM means To Rise, underscoring the determination of childhood cancer survivors, to rise above all obstacles in life & be VICTORS. The dream of such a support group was seen by a childhood cancer survivor, Shobhit Kaushal, who was a budding & very talented painter-poet who unfortunately was overpowered by his disease. He held his first art exhibition in March 2009 while fighting a losing battle with cancer & succumbed a month later. Shobhit, through his courage and indomitable spirit, touched the lives of so many people during his own short life. He fought cancer on his terms, never giving up and was full of hope and a feisty spirit right till the end. He left behind legacy of his fighting spirit, and vision to start the support group that will help millions of childhood cancer survivors to build up their life from ground zero & live life like normal human beings UGAM is the youngest unit of the oldest& most prominent NGO , Indian Cancer Society ( ICS) under its survivorship programme. ICS has been involved in the crusade against cancer for more than 55 years and is recognized by the Indian Government as the premier Non Profit Organisation for cancer in the country.

Vision
  • To ensure that every childhood cancer survivor finds his/ her way to celebrate life after winning their battle with cancer.
  • To facilitate their life’s journey on the correct path & in the right direction.

Mission
  • Empowerment of young survivors
  • Helping children with cancer undergoing treatment
  • Social awareness and re-bonding with society
UGAM Newsletters

PICASSO

ICS Survivorship program for Childhood & Young Cancer Survivors

Survivorship is an important component of cancer control programs. However there is no standardized Cancer Survivorship Program for optimizing care of survivors of childhood cancer in India.

For this growing population of cancer survivors with a whole life ahead of them, more concrete support structures have to be directed toward the evaluation and improvement of post-treatment care.

Medical care needs to be complemented with non medical (psychosocial) care so that the numbers of survivors lost to follow up are decreased.

  • Advances in all fields of oncology have led to an improvement in outcomes and in the majority of pediatric malignancies; the 5-year survival rate has approached 80%. This has resulted in an increasing focus on the late effects of therapy and quality of life in the growing population of childhood cancer survivors. Approximately, 2 of every 3 will experience at least one late effect; and 40% may develop a “severe, disabling, or life-threatening condition” 30 years after cancer diagnosis. Certain groups of childhood cancer survivors are at high risk for psychological distress, neuro cognitive dysfunction and poor health related quality of life.
  • Awareness that monitoring the late effects of cancer therapy is important is lacking among the survivors. Counseling the survivors on psychosocial aspect will help them lead normal life after cancer. There are issues like educational, marital, insurance, job related issues which need to be addressed for the survivor to lead a normal productive life.

Project PICASSO (Partnership in cancer survivorship optimization) was started in 2016 with an objective of facilitating hospitals to start Hospital based After Completion of Treatment (ACT) clinics for holistic ( Medical + Psychosocial) care of childhood cancer survivors. This Medical + social model was evolved based on the ACT Clinic at TMH which was established by Dr Purna Kurkure in 1991 and Ugam which is a support group of childhood cancer survivors under the umbrella of ICS.

The objective is to improve the quality of life of childhood cancer survivors and to decrease the lost to follow up cases by increasing awareness on late effects of cancer therapy.

ICS has partnered with Mumbai based hospitals Wadia, Sion & KEM and is expanding to partner with other hospitals outside Mumbai. HES Infra is the Founder sponsor of this holistic concept.

DJ FUND

Dr D J Jussawalla Education & Vocational Skills Fund was launched in July 2017.

The aim of this fund is to provide financial support for childhood cancer survivors, helping them to continue their education.

WPP India CSR Foundation is the founder sponsor of this holistic concept.

Rationale of holistic support :
  • Families of children with cancer face major financial challenges.
  • Childhood cancer survivors receive treatment during critical developmental periods when they had not reached full physical, emotional, or cognitive maturation. Therefore, they may face long-term medical, psychological, and cognitive late effects.
  • The cancer experience may have interrupted education or time with family and friends. Adult identity formation and attainment of young adult developmental milestones may be delayed or difficult to achieve.
Eligibility criterion:

Age group: 10-20 years, exceptional cases 21-29 years (those who have had gap in their education etc)

After immediate completion of the active treatment, survivors can be included.

Annual Family Income: less than 3 lakhs (for a merit student, advisory committee may consider exceptions)

Areas of support:
  • Financial support for continuing education
    (There is a cap/limit as per the educational level)
  • Psychosocial assessment, IQ testing & counseling
  • Career counseling and workshops on study skills
  • Spoken english classes
  • Engaging in various support group activities to build the confidence and re-bonding with society, support group membership
  • Home visit or visit to the institution (on case to case basis if required)
  • Quarterly progress assessment and follow up
Governance Structure

After the evaluation of ICS Survivorship vertical, a two tiered system with a Selection committee team and a General Advisory Committee (GAC) is responsible for a thorough scrutiny of applications, guidance on case to case basis and disbursement of the fund. Disbursement is done directly to the institutes and receipts are submitted to ICS.

Documents required:
  • Completed application form
  • Hospital referral letter
  • Aadhar card, income certificate
  • Fee Structure (Format is shared with applicant)
  • Mark sheet of previous year
  • Career counsellor’s report wherever applicable

Rehabilitation of Cancer Patients and Survivors through Vocational Training

  • The class of 2019 with their Instructor

  • Various saree blouses made by the class

  • Children’s dresses made by the class

  • Basic Embroidery

  • Saree bags made by Rehab section for sale

Vocational Rehabilitation through training in tailoring
  • Tailoring course for 6 months during which the patients are trained according to a standard curriculum and are assessed by professional trainers at the end of training.
  • Certificates are given at the completion of assessment to successful candidates.
  • Sewing machines are donated to eligible candidates at the end of the course.
Psychosocial Rehabilitation
  • Therapeutic recreation therapy like visual imagery
  • Relaxation techniques
  • Dance movement therapy
Nutrition and Financial Support
  • A daily midday meal,
  • Nutritional supplements
  • Minimal stipend
  • Conveyance allowance
  • Survivor making Breast prosthesis

  • Cervical cancer kit being assembled

  • Another survivor assembling cervical cancer kit

  • Stoma bags being manufactured

  • Other survivors assembling stoma kits

Physical Restoration Services

The unique aspect of this section is that all aids are produced by the cancer survivors. The breast prosthesis, cervical cancer kits, jaw stretcher keys and colostomy sets are made at the workshop and sold at a nominal cost to patients all over the country. They are provided free of cost to the underprivileged.

Psycho-Social & Community Adjustment Services
  • Ensure that every Childhood cancer survivor finds his/her way to celebrate life after winning the battle with cancer
  • Facilitate their life’s journey on the correct path and in the right direction
Aid to Rural/Urban Cancer Patients & Survivors
  • Daily livelihood/assistance for around 60 cancer patients/survivors and their caregivers
  • Free food and nutritive supplements
  • Medical assistance
  • Accommodation