Round up: October 2015 to March 2016

This is a six month round up of work covering October 2015 to March 2016.

Starting and sustaining Caregivers Link has been a challenging experience across all fronts, personal and
professional. This is written to share some of what has been done as a result of the continuing support and encouragement of friends and well wishers.

In October we renewed the effort to reach out and talk to individuals and institutions involved with care. This connected us to the Cipla Palliative Care and Training Centre and the Deenanath Mangeshkar Hospital and Research Centre. It brought us to an exchange of emails with Prof. Sunita Pandhe Gupta and a meeting in January 2016 with student volunteer coordinators at Pune’s Fergusson college. Further follow up from both sides will take place in July this year, since it’s exam time now and fresh batches of volunteers will soon come together to decide upon their next set of projects.

IMG_1378In November we planned and put together our Care 7 days 7 stories online campaign for December, with the help of seven participants and a team of campaign support volunteers. This was an effort at generating interest, awareness and conversation around care relationships. About 300 people were invited to the Facebook event online and many contributed posts and responses to the stories shared. As a result of the campaign, a survivor sent in her story of dealing with cancer and we shared her story, ‘Asha: the warmth of hope‘ during the December campaign.

Other than this focused campaign, our conversations in the online space continue through our website and the Facebook Caregivers Link group. We thank those who have contributed and continue to contribute their writings, blogs, comments and shared experiences. We also thank Aparna Mittal for her support and the opportunity to carry on the dialogue on the online platform of Patients Engage. We participated in a campaign on their website in January 2016, with the piece,Care: One conversation at a time‘.

In December, a chance follow up on a flyer advertising a multi activity centre for older adults at Wanawrie, Pune, led to our first service contract in January. We are pleased and proud to design a customised activity for service users at the Sanctus Rehabilitation Care Foundation (SRCF) based on Life Stories, a facilitated effort that results in creating autobiographical material for self, family, friends and carers. All preliminary work for this is now complete and as this is written, we are about to step into implementation of the pilot phase of Life Story sessions. Chandni Mehta is anchoring this on behalf of SRCF.  Apart from her experience as a practicing psychologist, she brings fresh personal perspectives to this work and a great willingness to be open to new approaches to self care. Dev and Jaya, the brains behind SRCF, are attempting to create an enabling environment for their teams as well as their service users. This experience offers us all the opportunity for knowledge sharing while designing customised services. Go ahead and read more here – Life Story work – what is it?

Devashri of Caregivers Link is now in the process of designing a program adapted from Life Stories which may be shared with a wider public in the online space.

Through work independent of Caregivers Link, we have been focusing upon issues related to mental health, psychosocial disability and issues of inclusion since 2014. We thank Bhargavi V Davar and the entire team at the Bapu Trust, particularly Kavita Pillai, Bharati Misal, Almas Momin, and more recently, Niharica Shah, Swati Shinde, Swaroop Waghmare, AliMunnisa, Naziya, amongst others, for their openness in sharing their thoughts and knowledge, working in the community mental health sector and on issues of disability and inclusion in community.

Caregivers Link partner, Shikha, participated in a national conference on research dissemination organised by the Bapu Trust in Pune, in March this year, where she made a short presentation to the plenary. This was based on one aspect of her work with the organisation, focusing on a currently ongoing survey of good practices on the inclusion in community of persons with psychosocial disability. This survey and study is being conducted by the Center for Advocacy in Mental Health (CAMH), the research, training and advocacy department of the Bapu Trust. CAMH has been a hub for Asia region advocacy around the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). This survey is of persons in the South East Asian region, who self-identify as experiencing or having experienced psychosocial disability. It is open till the end of April 2016 and may be accessed at this link:-

Further as a result of this association, we are now looking at new avenues of work, partnership and collaboration. Conversations await with Devika Shetty, Juhi Jha, Bobby Zachariah, Amrit Bakhshy and Dr. Sadhana Natu and some of her students at Modern College (Pune) who have extended a warm invitation to us to speak about our work and volunteer requirements with them.

In Delhi, Janet of Caregivers Link continues to offer counselling services to her clients. This has included phone counselling with individuals who have approached her through our website or through past interactions with her and with members of our earlier team of volunteers in Delhi. This team was responsible for doing much of our exploratory ground work on alternatives and options such as animal assisted activity and therapy. Read more about our Counselling Services here.

Looking ahead, our current commitments and concerns primarily include:-

Implementation of the pilot phase of our work with life stories at SRCF;
Expanding the scope of Life Story work;
Ongoing online campaigns that help visibilize care relationships and discuss concerns that include self-care;
Creating a sustainable student volunteer programme;
Designing customised on-the-ground services for new clients and client groups;
Expanding our counselling services in Delhi;
Working through partnerships and collaborations on care matters.

A word before a last word. There is a huge set of care issues around the matter of Home Care Attendants. At various times we have been actively exploring aspects of this subject, planning, rejecting and discussing options of ways we can make a positive service contribution. This continues to remain a piece of the puzzle for us. Discussions and collaborations on capacity building in this space are very welcome.

We thank many who have kept us on this path, asking questions, suggesting answers, dipping into their pockets generously, once and more than once. To those who have contributed time and effort, to those who have sponsored our expenses, we are happy to have you, grateful for all you have done and continue to do.

We would like to thank our sponsors for being there, believing in us, and supporting us.
To our extended, current, network of sounding boards, supporters and friends, a big shout out.
The work continues. Expect the next sms, email or phone call soon.
And yes, thank you.

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