www.btsgfoundation.in

 

 

Activities conducted by Brain Tumour Support Group and Awareness Foundation India during 2021-22

 by Dr Nitin Garg, BTSG Awareness Foundation India

 

The Brain Tumour Support Group (BTSG) and Awareness Foundation India was established in 2019 with aim to provide psycho-social support to Brain Tumour patients and their care givers. It is presently limited to Central India.

 

Various activities undertaken during 2021-2022 :

 

1.  Monthly Support Group Meetings — The support group meetings were held physically initially, but since the COVID pandemic, the Foundation has been conducting these meetings regularly through virtual platforms. The participation has been very positive.These meets are looked forward to and there is a healthy participation from patients and care givers. We have been surprised at the adaption of technology by patients from all economic strata of these virtual online platforms.

2.  Providing “Real-Time Psychological Support” — The Foundation believes in providing psychological support in “Real-Time” i.e right from the time the diagnosis is made and not as an after thought when the entire treatment is over. Our counsellors get in touch and are involved with the patients and their care givers from the beginning, i.e when the diagnosis is made first.  They communicate with them first when the patient visits the out-patient clinic and the support continues throughout the course of treatment and recovery. During last year, almost 200 brain tumour patients and families have benefited from this. The feedback has been very positive and the families have found it easy to navigate through the entire course of treatment and the duration of the illness. 

3.  Providing financial support to patients from economically weaker sections of society — Those from economically weaker section and facing financial difficulties are provided with funds. These funds are arranged through voluntary and philanthropic donations.

4.  Separate Self help groups have been created for gliomas, pediatric tumours and pituitary adenomas. These members in these respective groups are in contact with each other through what’s app / mobile and deal with various issues with each others’ help and guidance.

5.  With significant cultural and linguistic similarities, the BTSG Awareness Foundation India has co-ordinated and helped Brain Tumour Foundation of Pakistan to initiate support group activities in their country. With language no longer a barrier, few combined meetings have also been conducted. The foundation has also participated in Patient centric care symposium of Pakistan Society of Neuro-Oncology held online.

6.  Starting Bangalore chapter — The Foundation has started the Bangalore chapter with help of volunteers — a brain tumour survivor and a care giver. We hope this will help patients from this region.

7.  Recognition as a member of Asia-Pacific Brain Tumour Alliance.

8.  Contributing towards Brain Tumour Charter of Rights and its Hindi translation.

9.  Distributing patient information booklets to patients and care givers free of cost — These information booklets help in understanding the various aspects of the illness and the treatment. The foundation is distributing these free of cost in different languages.

10.  Running web-based information portal.

11. Awareness activities — Various activities have been conducted to raise awareness in society about Brain tumours, treatment advances and the significantly improved outcomes. Various platforms as social media, print, digital, and television media are used for these activities. One such event was International Brain Tumour Awareness week in the month of November. This year, during this week, there was active participation and involvement as the COVID situation was under control.

   A. Physical meet of patients and care givers : This was the first physical meeting in over 18 months since the COVID outbreak. This was well attended by patients and care givers. They were very enthusiastic in their participation. The participants were well acquainted with each other through the virtual online patient support group meetings which were held every month from April 2020 onwards. They were very happy and pleased to meet each other physically. There were talks, dance performances and songs sung during this 2 hour programme. Those who could not attend shared their messages and performances through videos. Language breaks down barriers. Ms Komal from Brain Tumour Foundation of Pakistan also participated in this meet and sent her video message. Everyone was very pleased with the energy levels and the positivity in the air. This meet was also attended by other medical specialists and paramedical staff. The entire meeting was telecast live on “Facebook Live”.

   B. Radio Channels : The local FM radio channel conducted interviews of patients, care givers and counsellors and telecast these talks daily for 2 hours from 31/10/21 to 3/11/21. The patients and care givers highlighted the importance of being a part of support group and how it helped them during the critical moments of this journey.

   C. Television channels : There were four programmes of 30 minutes duration each conducted on Doordarshan and Bansal News channels under their Social Awareness Programmes. Each of these had an interactive Q&A discussions. The participants were grouped as Neurosurgeon with a patient and other group has counsellor with a care giver. Various aspects about Brain Tumour Treatments and misconceptions, importance of psycho-social support and patient support group were highlighted in these programmes.

   D. Social Media: The physical meeting and Radio channel interviews were telecast on Facebook. In addition, websites and twitter was used to highlight various aspects related to this illness.

   E. In hospital awareness activities: Various printouts and standees were placed in the hospitals to sensitise the patients, care givers and medical personnel about the various treatment related aspects of Brain Tumours.

   F. Participation in Brilliance — A Virtual Online Exhibition: The Foundation motivated and helped patients to submit their artwork in an Online Exhibition for Brain Tumour Patients, their care givers and medical professionals managing this medical condition.

12.  Generating funding support from philanthropy and voluntary donations.

  

To conclude, the COVID pandemic has been a tough period for patient and care givers due to limited access to healthcare facilities. During this period, the Foundation has made consistent efforts to continue its support group activities and to regularly provide psychological support. We hope to expand our activities to different regions of the country in the next year.

 

Image 1 —  Physical meet during IBTA Brain Tumour Awareness Week 2021

 

Image 2 & 3 —  Virtual meetings during COVID pandemic

Image 4 — Participation in Patient Centric Care

 

 

 Image 5 — Awareness programmes on Television with Brain Tumour survivor and Care givers