“Imagine if all the flowers in the world were of the same colour and shape – how boring it would be! What makes the world a beautiful place is the presence of so many different kinds of flowers – of all shapes and colours and types. Or, imagine how it would be if the fingers of our hands were alike. Each finger serves a different purpose and each one exists for a reason. It is just so, with human beings as well – we are all different, each one of us is unique, each one of us is important. We serve different roles in this life – together, we make this world a delightful place to live in.” These were the inspiring words of Sarasu Thomas, author of stories and poems, and recipient of several awards, who was the chief guest for concluding meeting of a workshop on empowering differently abled women, held at Kanthari International Institute for Social Change, Vellayani, Thiruvananthapuram, on December 15, 2018. The workshop was organized by Pallium India in collaboration with Mobility International USA’s (MIUSA) Women’s Institute on Leadership and Disability (WILD).
19 differently abled women attended the program, including ten students with hearing impairment from National Institute of Speech & Hearing (NISH), three visually impaired students from Cotton Hill School, and six women in wheelchair who belong to various fields. The program was also attended by several volunteers.
Everyone actively took part in a discussion on Rights of Persons with Disabilities (RPwD) and women’s rights, which was followed by an informative session on sexual and reproductive health by Dr Shaliya James. Following this, the participants were asked to spend some time pondering over their own lives and ambitions, and later speak about them. One of the volunteers gave a class on the basics of sign language to the rest of the volunteers.
Aishwarya, a student of Cotton Hill school who dreams of being a musician, enthralled the listeners with a beautiful song. At the end of the program, everyone left with the firm conviction that their ambitions were indeed within reach.
At the conclusion of the workshop, everyone promised to work together on improving the lives of differently abled people.
Ashla Rani, the winner of the youth icon award of Kerala government, made this pioneering effort. Way to go, Ashla!
Now that palliative care is included in the national health policy, now that the opioid regulations are simplified and now that it has been accepted as a part of HIV care, let us hope that the growth curve of palliative care in the country gets steeper.
Please see the attention that Pharma industry is giving to palliative care: http://pharmabiz.com/NewsDetails.aspx?aid=112832&sid=1
Universal Health Coverage day was observed across the world on 12 Dec 2018. To commemorate this day, Government Medical College, Thiruvananthapuram and Pallium India Trust organized a workshop on 11th December, titled “Palliative Care & Universal Health Coverage in Kerala – The Way Forward, Call for Action Based on Astana Declaration”.
The workshop was led by eminent personalities like Shri Rajeev Sadanandan IAS (Additional Chief Secretary, MoH&FW, Kerala), Shri Kesav Desiraju IAS (Former Principal Secretary, MoH&FW, GoI), Shri SM Vijayanand IAS (Former Chief Secretary, Kerala), Dr TK Sundari Ravindran (Former Professor, AMCHSS, SCTIMST), Shri Narayanan Puthukudy (General Secretary, IAPC-Kerala), Dr Thomas Mathew (Principal, Govt. Medical College, Thiruvananthapuram) and Dr M.R Rajagopal (Chairman, Pallium India). Although it was a hartal day in Thiruvananthapuram district, more than 150 participants managed to join the workshop which calls out loudly the importance given to palliative care by our civil society.
The discussion began with emphasizing the need to include palliative care in primary health care and then moved on to a wide array of components. A few important points were the life cycle approach of Ardram mission, requirement of human resource and capacity building in palliative care delivery, absence of palliative care package in the new public health insurance scheme, absence of palliative care training in medical, nursing and allied health sciences, a monitoring agency to look into the implementation, synergizing with various departments for effective implementation, importance of initiating and delivering paediatric palliative care services, implementation of Clinical Establishment Act, gender disparity in accessing, care givers’ plight and disability that also includes disability arising due to mental health issues.
Developing a pool of volunteers at state level and student volunteers was also suggested as community engagement in National Health Policy 2017 was reinforced through Astana Declaration. Although Indian Constitution regards improvement of public health as state’s primary duty, we spend less that 1% of our GDP for public health expenditure. According to Lancet Commission Report, minimum cost per capita for palliative care service delivery ranges from $ 115 to $ 694.
The program concluded with a declaration to take palliative care forward in Kerala. This declaration will be submitted to government of Kerala, GoI and to all other state governments to strengthen palliative care services.
Would it be possible for us to deliver quality palliative care to all in the near future? If not, how does India achieve UHC by 2030? Let us wait for something good to happen but until then let us not sit idle.
National Technical Guidelines on Anti-Retroviral Therapy (ART) Oct 2018 include chapter on Palliative Care
Professor Dinesh Kumar, our collaborator from Anand, Gujarat, writes:
National Technical Guidelines on ART_October 2018 have been released recently. The guidelines have a dedicated chapter [Section 2, Chapter 12, 14 pages] dedicated to palliative care. This indicates increasing recognition for palliative care in the framework of existing National programmes. This will help in making palliative care services more accessible to HIV positive individual and families. It will contribute to integrating Palliative care in the healthcare system. Hope other programmes will also follow the lead.
Her aged husband has been paralysed following a Cerebrovascular Accident (CVA). A second tragedy followed, when she lost her young son who was her only support.
Her husband is a paraplegic. She sets an alarm at night to turn him in bed every two hours so that he doesn’t get bed sores.
She lives alone with her husband who is a heart patient and less mobile following a spinal injury. She has to leave her house at 5 a.m. to support her ailing husband to run her tea shop.
Her son (aged 34) and daughter (aged 36) are completely bedridden since the last 30 years. Her husband is a coolie.
These were the stories of four women caregivers that were presented in the documentary titled “Support-A different story” by Ms.Beena Paul and Ms.Raakhee, at the workshop on the ‘Hidden World of Women Care Givers’, organized by Women’s wing of Federation of Malayalees Association of Americas (FOMAA) and Pallium India, on 3 December, 2018 at Mannam memorial Hall, Trivandrum. About 50 care givers and a few of their family members, as well as Pallium India’s volunteers and invited guests from various fields attended the workshop.
Ms. Mangala Francis, Pallium India’s volunteer and coordinator of the FOMAA project, who welcomed the participants explained that the objective of the workshop was to bring together women care givers associated with Pallium India, provide them with a forum, listen to the challenges they face and acknowledge their contribution.
Pallium India, with the funds from FOMAA, provides support to women caregivers to start income generation activities. The workshop was part of Pallium India’s efforts to systematise its work with women caregivers and create awareness about the hidden world of women caregivers who globally account for 80% of all caregivers.
Following the documentary screening, Ashla Rani reflected on her experience as a person receiving care, especially from her mother. Ashla appealed for recognition of care givers, particularly women, whose services are unacknowledged. Ms. Reshmi spoke as a care giver and highlighted the travails faced by women in providing care and working to earn an income to run the family.
The next segment included a panel. Ms.Sonia George from the Self Employed Women’s Association (SEWA) described the work of SEWA for the protection of rights of self-employed women. She stressed that women care givers should come together to break their isolation and should consider their problems as a social issue. Dr. Sreedevi from Pallium India, based on her daily experience in dealing with care givers, said that the role played by women care givers are taken as normal and no one acknowledges their immense sacrifice. She suggested that assistance should be provided to women care givers to enable them to take a break from their routine. Ms. Asha from Kerala Mahila Samakhya Society spoke about her work with marginalised women particularly with regard to violence faced by them and how this workshop has made her reflect about the issue of women care givers. Ms.Asha Nair from the Women’s Development Corporation (WDC) explained various schemes conducted by WDC and promised to include women care givers in their projects and programmes.
The panel presentation was followed by an open discussion moderated by Ms. Jyothi Krishnan (Independent researcher/consultant). Several women caregivers narrated their experiences, some were choking with emotion as they spoke and the audience were overwhelmed by their ordeal. A few also requested help to start a grocery, buy a sewing machine etc. Dr.Sulochana, former Professor from the Kerala Agricultural College, shared information about her NGO named ADISHA which is providing training to women to grow vegetables and mushroom cultivation.
Ms. Jyothi summarised the main points made by the panellists and the interventions from the participants. She said that there must be dissemination of information to the beneficiaries of their entitlements in various government schemes. She was sceptical if a role reversal would take place in society of men sharing the woman’s burden and added that it was society’s responsibility to ensure that happens. The main message she conveyed was regarding the need for providing not just material support to women caregivers but ensuring that the society acknowledges their role and contribution. She also reaffirmed a suggestion made from the floor for conducting a systematic study of problems faced by women care givers and the role of various governmental and non-governmental agencies in mitigating them.
The workshop was also attended by Mr.Jain Kannanchamparambil, Joint Treasurer of FOMAA . He appreciated the efforts made by Pallium India to support women care givers and the organization of the workshop on the subject.
The session ended with a vote of thanks from Lijimol of Pallium India. The workshop was compered by Ms. Shobana Kumari, a Pallium India volunteer.