National advocacy with the MS Society of India

The Multiple Sclerosis Society of India (MSSI) is made up of nine regional chapters, and has been supporting people with MS in India for over 30 years. In 2020, MSSI and MSIF committed to working together to increase the impact and effectiveness of MSSI’s country-wide work and build its national profile. This article looks at some of MSSI’s most exciting projects and gives a snapshot of MSIF’s visit to regional chapters in Delhi and Mumbai.

MS in India

 India represents one of the world’s largest economies and the second most populated country. According to the Atlas of MS, there is an estimated 145,800 people living with MS. Estimated is the word, as there are real challenges mapping MS across India, including a lack of MS awareness and information, limited access to diagnosis and MS healthcare.

MSSI identified these barriers as key issues for people affected by MS in India, leading to the 2020 -2023 National Advocacy Project supported by MSIF.  Since then, MSSI has been delivering national campaigns to improve the lives of people with MS across India through data collection, government lobbying and awareness raising.

ReassessMS

One of MSSI’s key advocacy initiatives was the national advocacy campaign #ReassessMS. The campaign aimed to get government to consider the invisible symptoms and episodic nature of MS within disability assessment guidelines. There was active engagement from MSSI’s nine chapters, people with MS and other disability organisations. MSIF supported MSSI remotely to design and deliver the project. Over 450 photos and videos were shared on social media, including content from health professionals, government representatives, disability organisations and celebrities.

Mapping MS in India

MSSI also ran the #NumbersMatter campaign, launching a unique, crowd-sourced India MS Map to collect data from people with MS across the country. This project highlighted the gap in the government’s approach towards MS data collection. The initiative was used to run a petition asking the government to create a comprehensive national MS database. MSSI submitted a letter of appeal to the Indian Government with a signed petition to the Indian Council of Medical Research. You can learn more about the campaign in this video from Sandeep Chitins, Honorary National Secretary, MSSI and Javed Hasan, National Project Director, MSSI.

 Visiting the MS Society of India

In February 2023, representatives of MSIF travelled to India to perform a evaluation of the National advocacy project due to end in May 2023. Organisational Development and Movement Building Manager, Annthadine O-Oyefeso, and Communications and Campaigns Officer, Lili White were sent to learn more about the project’s impact and how MSSI’s advocacy work can be sustained in future.

First stop Mumbai

Annthadine and Lili began the visit in Mumbai to participate in India MS Day, run a focus group, and meet with local supporters. On the first day of their trip, they took to the streets of Mumbai to mark India MS Day. India MS Day was launched by MSSI in 2016 to raise awareness about MS at a national level. It is marked on the first Sunday of February, with people affected by MS running awareness raising activities across the country.

The event attended by Annthadine and Lili was a great example of the MS community rallying into action. Whilst out for their morning walks by the Mumbai seaside, members of the public could also stroll past and learn about MS, listening to an informative programme of talks from neurologists and key speakers like Sheela Chitinis, founding member of MSSI and honorary chairperson at MSSI. It was a powerful day of solidarity and a chance to see some of MSSI’s grassroots advocacy from the ground.

Annthadine ran a focus group with staff who had attended workshops run by MSSI throughout the project term. The workshops included topics like advocacy, social media, capacity building and disability laws in India. The aim of the focus group was to see how these workshops were used by local staff. The Mumbai team shared practices in place since completing the workshops and discussed how learnings contributed to national advocacy goals.

Annthadine and Lili also spoke with many people affected by MS in Mumbai. It was clear that MSSI play a huge role in supporting the local MS community.  One MS caregiver, Aayush, said:

‘They are constantly in touch with us, checking if we need help. Sometimes we are hesitant to ask for help ourselves, but they are always checking up on us and providing all the support we need.’

It was very powerful to see the real impact of MSSI’s services to the lives of people with MS.

Sharing stories in Delhi

The next stop on the journey was Delhi. Once in the capital, Annthadine and Lili ran a communications workshop, another focus group, interviewed local people affected by MS, and met with a connected disability organisation who worked on national disability guidelines with MSSI. The visit gave a deeper understanding of MSSI’s growth since its partnership with MSIF.

Abhishek Trivedi is taking to the road to raise awareness about MS

The aim of the focus groups and interviews was to assess the progress of the #ReassessMS and #NumbersMatter campaign.  These campaigns gained the attention of government officials, neurologists, and institutions who now recommend MSSI to their patients and friends. #ReassessMS and #NumbersMatter have helped uncover more registered cases of MS in India, and improve reported access to MS diagnosis.

It has paved the way for MSSI to launch future initiatives to improve access to MS treatments.

In Delhi, Lili and Annthadine had the opportunity to meet people affected by MS who shared difficulties they face accessing MS diagnosis, treatments and care. The social stigma and taboo around MS symptoms were highlighted giving a picture of life with MS in India. One person with MS they spoke with, Abhishek Trivedi, shared how he was challenging this social stigma, by collaborating with MSSI to drive across the country raising awareness and educating people about MS. It was inspiring hearing how the MSSI community, were taking collective action for MS across India.

As the 2020 -2023 National Advocacy Project draws to a close, it has been a moment to reflect on MSSI’s growth and impact. The visit to Mumbai and Delhi showed the progress made through advocacy activities.  MSSI has brought public attention to MS as an important health concern across India with initiatives like #ReassessMS and #NumbersMatter. MSSI will continue to build on this progress to meet the needs of people affected by MS across India.

Learn more

To find out how MSIF’s multi-year project with MSSI developed you can read this article on the launch of the collaborative work.