2018; Volume 19, No 8, August
IAHPC Grants in Action
This month, we present the final report from Dr. M.R. Rajagopal, who received a grant to advocate for palliative care in India. Reports from Traveling Scholars who attended the 2018 International Children's Palliative Care Network Conference in Durban, South Africa, are also included.
Dr. M.R. Rajagopal, right, in an image from the movie about his work in India, Hippocratic. (Photo courtesy of Moonshine Agency, Australia.)
Results of a Year-Long Project: One Grant Can Propel Great Change
Dr. M.R. Rajagopal, India
Advocacy of palliative care is the need of the hour in India; people do not know that pain can be relieved, and their families and administrators have opiophobia. Advocacy is needed to change society’s mindset, medical professionals need education about pain management and care until the end, and government officials need to know how their actions can bring relief to suffering patients.
IAHPC provided a two-part grant totaling $7,500 USD to take up this battle head on. This grant allowed Pallium India to recruit a National Projects Officer, Shalini A.J., to advocate for palliative care for one full year. We had initially targeted just three states, but overwhelming support from granters like IAHPC allowed us to expand to 17 states and regions.
Instant connections with compassionate hearts
We conducted opioid availability workshops, sensitizations sessions, and one-on-one meetings to bring palliative care to the notice of all stakeholders. There have been some discouraging incidents, but they never dampened the spirit of the team. We found people with big hearts who connected with our message instantly, and understood how treating pain adds to quality of life. These individuals with compassionate hearts exist everywhere – among officials of state governments and people within medical institutions and communities; we only needed to find and connect with them.
Palliative care physicians and officials in the states like Mizoram, Uttarakhand, Andhra Pradesh, Tripura, and Himachal Pradesh supported this drive strongly and created state-wide initiatives. Achievements included: better awareness among officials, better interaction between professionals and officials, and speedier processing of applications for morphine.
We had many goals, and attained much progress:
- We approached the Department of Revenue of Government of India regarding implementation of the rules of the Amended Narcotic Drugs and Psychotropic Substances (NDPS) Act. We suggested sending a newsletter or regular bulletins to each State Health Department announcing the amendments. Shalini approached State Drug Controllers to clarify ambiguity or challenges in implementation of the NDPS law. She also shared all relevant documents clarifying the changes and defining the necessary steps to enact them.
- Shalini conducted sensitization sessions for the medical fraternity and government officials through different networks:
- health ministries – Himachal Pradesh, Haryana, Tripura
- NGOs — Mizoram, Uttarakhand, Gujarat, Tamilnadu, Assam
- individuals/medical colleges — Madhya Pradesh, Maharashtra, Goa, Bihar, Nagaland, Uttar Pradesh, Meghalaya, Punjab
- Shalini arranged or participated in five opioid availability workshops, in Himachal Pradesh, Madhya Pradesh, Maharashtra, Uttar Pradesh, and Delhi.
- Follow-up with the Drug Controller’s Offices is in progress.
- A major addition to the strategy has been advocacy of the National Program of Palliative Care (NPPC) with all state governments. NPPC is a centrally sponsored program to provide palliative care services in each district hospital. The state is responsible for implementing the program in all districts, but we realized that there is big gap between understanding and implementation of this program. Many states do not include NPPC in their annual budgets. Shalini met with health ministry officials in Himachal Pradesh, Madhya Pradesh, Uttar Pradesh, Tripura, Mizoram, Gujarat, Tamilnadu, Meghalaya, Assam, Haryana, and Delhi to encourage them to add NPPC to their annual budget proposals. She maintained a close rapport with Dr. Alok Mathur, Chief Medical Officer at Directorate General of Health Services, Ministry of Health & Family Welfare in Delhi, regarding the amount allocated to each state for the NPPC. She followed up with each state for its implementation plan, and helped to arrange for training and awareness of palliative care.
We thank IAHPC for funding and facilitating this program. Shalini noted that, personally, this past year has been a soul-satisfying journey.
Reports from the ICPCN Conference
Group photo at the 2018 ICPCN Conference in Durban, South Africa.
Enacting Pediatric Care Requires Determination, Patience
Delia M. Birtar, Romania
In Romania we started pediatric palliative care 22 years ago. We now have a well-developed service in Brasov, and do lot of education through our Study Center. Following education and lobbying at different levels, palliative care services for children started in five other towns, but the need is still not met, as only 10% of children needing PC have access to it.
One challenge is the lack of money; another is that the area of PC is not appealing for medical staff.
The film we saw at the conference, Hippocratic, about Dr. M.R. Rajagopal pioneering palliative care in India was an encouragement that things can change, with lots of determination and patience, even if this will take many years. This is the way in which pediatric palliative care has won ground in Romania as well.
Once home, I began sharing information about pediatric palliative care gained through lectures I attended by prestigious people in the field, which will improve the care of the 160 children we treat. I will also be able to include up-to-date information in courses I teach doctors, nurses, and other professionals in Romania as well as surrounding countries.
The grant I received also allowed me to participate in the ICPCN Annual Board meeting, where we established a strategic development plan for the next three years.
Oral presentation: Use of Different Services in a Complex Pediatric Palliative Care Unit [Hospice Casa Sperantei Brasov]
Delia Birtar also contributed to two conference workshops: Ethics, and Pioneering Children’s Palliative Care.
Chenjerai Bhadheni
I Informed Others about a Rare Skin Disorder
Chenjerai Bhadheni, Zimbabwe
The ICPCN conference was a huge learning platform where my palliative care understanding was further strengthened, in that achieving meaningful quality does not only start and end with direct care but also a lot of effort is invested in setting out the tone for a sound working environment. As a palliative care nurse coordinator, I felt the conference was quite empowering.
Among others, I attended the expert session on children’s palliative care representing my organization, Island Hospice and Healthcare (Island), the first hospice to be established in Africa in 1979. I also presented a poster, and several people came to view it and have a chat with me about my experience with children in my country. This day brought about huge networking opportunities as we exchanged contact details with a number of other conference attendees. One thing I learned was the scarcity of knowledge and limited understanding of the condition I presented on, a rare, inherited skin disorder called xeroderma pigmentosum.
Given the wealth of information and the opportunity for networking that was brought about at this conference all I can say is, thank you very much IAHPC for affording me this wonderful moment in my lifetime, it was such an amazing moment for me!
Stepping Out of My Comfort Zone
Mamak Tahmasebi, Iran
Mamak Tahmasebi
There isn’t any children’s palliative care in Iran. The ICPCN conference inspired me to step out of my comfort zone, which is palliative care for adults, and to start a service for children in my hometown. Since returning home, I’ve already started to learn and teach children’s palliative care within a small group of physicians and nurses.
The conference taught me that children’s palliative care is not simply downsizing the dose of medications. I also heard for the first time about the ICPCN website, and I decided to translate online courses for children’s palliative care to Farsi in order to encourage Iranian nurses and physicians working in this new field.
The next step would be introducing pediatric palliative care to key pediatricians in medical universities, and ask them to support widespread education of the basics of palliative care for children. And I have a plan to convince policy makers in health ministry for preparing appropriate formulation of morphine for kids
Thanks to IAHPC for giving me the chance to learn so much from the amazing experiences of people working in different specialties.
Maiara Rodrigues dos Santos
Learning Strategies to Integrate Competences among Undergraduates
Maiara Rodrigues dos Santos, Brazil
The ICPCN Conference, ‘Inspiration, Innovation, Integration,’ helped me to achieve my professional objectives by developing palliative care competences related to care for children and their families, as well as learning strategies to integrate palliative care competences to undergraduate courses.
This conference surpassed my expectations, transforming also my personal background with the opportunity to approach diverse cultures and be inspired to improve my involvement in the practice of pediatric palliative care.
Exchanges with colleagues from many other countries broadened my approach; I am now a better advocate, helping to inform public educators on ways to improve Brazilian policies dedicated to accompany children and families in palliative care.
Oral Presentation (with co-presenters): Relationships between Parents and Healthcare Providers when a Child Dies from Cancer at the Hospital: Encounters that survive through times.
Poster Presentations (with co-authors): Parent’s Meanings for the Relationships with Healthcare Providers during Their Child’s End-of-Life Care; and The Moral Distress and Duality in Strengthening or Weakening Nurses’ Care of Patients with Advanced Cancer and Their Families.
To find out more about IAHPC’s Program Support Grants, and our Traveling Scholarships and Traveling Fellowships, please visit our website. Through these programs we support projects and individuals around the world, especially in developing countries in Africa, Eastern Europe, Asia, and Latin America.
You can contribute to this program and help palliative care workers attend and participate in congresses and courses by donating to the Traveling Scholarships Campaign in the Global Giving website.