On 28 & 29 October, we conducted a two-day workshop at Sahodaran Community Oriented Health Development (SCOHD), Puducherry, to understand and address the needs of transgenders, and to introduce the concepts of palliative care among them. The workshop is a step towards ensuring we’re “leaving no one behind”.
(Read about the workshop here: https://palliumindia.org/2018/10/reinforcing-leave-no-one-behind-palliative-care-reaches-out-to-transgenders/)
I would like to share an experience from the workshop, that touched me deeply. The group that came on the second day was older than the group that came on the first day. It was difficult for them to open up and their problems were different from that of the first group. When we started the group discussion, I joined a team of eight members. They talked about discrimination, stigma and accessibility issues. But the person who sat near me, well dressed in a saree and who appeared to be healthy, said, “I am all alone at home. I do not have anybody with me, for me to take care of or to take care of me. People including health care professionals approach us with hatred. If you get a wound, you bleed red, I too bleed red and not green; and then why should you see us differently? We are also human beings. I am HIV positive, I am taking medicines, and all that I get from the ration shop is a fixed quantity of rice and nothing else. I get a small pension and that’s how I survive.”
This is not the only story that I wish to narrate, but this is the shortest. Everyone had similar experiences. Loneliness, hopelessness and substance abuse were explicit among the group.
Friends, it is high time for us to realize that health care, including palliative care, must reach every human being in serious health related suffering irrespective of their gender or sexual orientation – they too bleed red, just as we do. Let me remind you that the 2017 Lancet Commission Report on Palliative Care mentions the need to develop access to mental health professionals. Literature review suggest that LGBTQI are at high risk of depression, anxiety, substance abuse and suicidal tendencies. This is the reason that Dr Seema Rao, an expert both in palliative care and psychiatry, has joined us as our resource person. At the workshop, we listened to only about sixty out of the 487,803 LGBTQI people (Census 11) in our country. Let us try to listen to each one of them and understand their needs.
Pallium India, in collaboration with the local community, supports relief work in the flood-affected areas of Pathanamthitta and Alappuzha districts. There are different individual and institution based support systems energizing the team to deliver proper care and support to the needy.
We have reached out to 225 people; many with serious health related suffering have been provided with all possible services such as distribution of physical aids, medical support and other psycho-social support.
Our team comprising of Mr Babu Abraham, Mr Lithin Abraham, Ms Gifty (medical and psychiatry social workers), Ms Shameema (Palliative care nurse) and Ms Vyshnavi V.K ( Project Officer) is doing remarkable work on the ground, to reach more people who are in need.
This work could not have been possible without the support of several generous, kind-hearted donors and volunteers who readily came forward the moment we asked for assistance. We thank you all, and promise you that we will continue to do everything we can, to help the needy.
Major Activities of the month
- Conducted palliative care need assessment survey in different wards of Chenganoor and Pandanad panchayaths of Alappuzha district.
- Connecting the local needs and patients’ details to the local government bodies to ensure action.
- Regular house visits and follow-ups by the field work team
- Review meeting held at Taluk hospital, Ranni (Pathanamthitta) with the palliative nurses.
- Conducted a session on Palliative care for the Panchayat members of Ranni Panchayat.
- Provided adequate support in patient care including bed bath and wound dressing.
- Provided essential medicine support (including preventive medicines such as doxycycline, ORS etc) to the patients who are facing different health issues.
- Support given to a family to shift them from Pathanamthitta to Trivandrum. Made all the possible arrangements for their child’s education in Trivandrum.
- Provided support for house modification to one person
- Pallium India social workers and palliative care nurse visited and assessed the health situation of each ward in Pathanamthitta and Alappuzha districts with the support of all the available recourses in the community level.(ASHA workers, PHC palliative care nurses, ward members, panchayath members and palliative care initiatives of Pathanmathitta and alapuzha districts)
- Gave wheelchairs to four people.
- Provided Electro larynx (voice box) to a person in Thrissur who had lost his when his house was inundated in the Kerala floods.
Cipla Palliative Care and Training Centre (CPC), Pune, celebrated its 21st Annual day on 28 October 2018. The event was attended by patients, relatives, palliative care providers and friends of the centre. Pallium India’s volunteer, Ashla Rani, was the Guest of Honour at this function and she narrated her experience of being both a palliative care recipient and provider.
Dr. Yusuf Hamied, Chairman of Cipla, thanked Ashla for inspiring the audience with her story of hope, optimism and sense of purpose. Ashla interacted with the CPC team and explained her role as counsellor at Pallium India’s half way home for patients with paraplegia and the bereavement support group. Rumana Hamied, CEO, Cipla Foundation said that Ashla’s participation at the annual day made the day a very special and meaningful one for the centre and a reminder for the need of palliative care for all serious illnesses.
Ashla says, “My visit to Cipla Palliative Care center brought back a lot of memories – how Pallium India accepted me with open arms when I was rejected by several other organizations, and how I was never judged. No one asked, ‘what can a person with quadriplegia do?’ No one said, ‘I don’t think you will be useful with all your limitations.’ I saw the same magic of palliative care at CPC. I enjoyed every moment of the day spent at CPC and fell in love with palliative care once again.”
Please see this excellent WHO publication authored by Elizabeth Davies and Irene Higginson, available for free download: Palliative Care: The Solid Facts
And see the important message:
“Emerging needs of people living with serious chronic illnesses, together with new evidence for the effectiveness of palliative care, mean it must now be offered more widely and integrated more broadly across the health care services.”
However, we wish the publication focused more on the needs of the developing world, simply because the developing world is 80% of the world. How about those with “serious health-related suffering” due to conditions that are not chronic in nature? Like the dying person in ICU? Like the child with 50% burns screaming in pain day in and day out, where no one except the palliative care person is empowered to provide pain relief and to offer psychosocial support?
Mahatma Gandhi Medical College & Research Institute (MGMCRI) in Puducherry has taken a leading step to understand and address the needs and problems of the usually ignored LGBTQI population in India. Our goal is to eventually improve their quality of life and to reinforce the mission of “leaving no one behind”.
A two-day workshop was jointly organized by Sahodaran Community Oriented Health Development (SCOHD), a Puducherry based NGO for LGBTQI, and Transgender Clinic of MGMCRI, in collaboration with Pallium India. We tried to explore the concerns of this marginalized community and attempted to improve their coping behavior. It was all about identifying allies in the heterosexual community and empowering them to seek help when they are in need. We know that this is but a drop in the ocean; nonetheless, it is a beginning.
In the picture: Group discussion guided by Dr.Seema Rao (left), PhD Scholars, Dr. Vidhya, Dr. Ambujamm Sreedevi, Dr Sameera J, Ms. Sumitha, Ms. Sheetal (Founder of SCOHD and Nayak) & Mrs. Latha Srikanth.
