My story is about a Palliative Care Project, Ngora Hospice which is run by an NGO called FADO-T. I give a brief summary of what FADO-T is about and then I go into some detail of how the Ngora Hospice project was started as a private initiative in 2006 to provide PC services through a Home-based model to poor patients, in marginalised rural areas. Unfortunately, the work was abruptly stopped end of 2014 when FADO-T lost operational premises and was rendered homeless after the work had progressed to great heights and the demand for its services far outstripped its resources. But wisdom had to be exercised in order to maintain quality in results although it was always hard and painful to reject legitimate cases in excruciating pain and terrible suffering.
In 2017 I was selected by IAHPC for an award for outstanding commitment to PC. The award is what gave the finances that enabled FADO-T to restore the Ngora Hospice project which is up and running today as I write. Please read below the brief about FADO-T then go on below for the story about the Ngora Hospice Project.
FADO-T (Faith Action Development Organisation – Teso) is a local NGO located in Ngora district in Teso sub-region in Eastern Uganda. It was registered by local believing Christians in 2005 for the alleviation of rural poverty that had condemned over 70% of the population (according to World Bank figures of the time) to live under the poverty line. In Ngora district that percentage was 84%. FADO-T work starts in Ngora and is planned to extend to other districts in the Sub-region as resources allow.
FADO-T in its rural poverty alleviation recognises the diabolical way that adverse poverty erodes the sanctity of human life in those it afflicts, condemning them to sub-human existence. FADO-T therefore, espouses the concept of the intrinsic value of all human life in every human being as made in the image of God, hence its Vision and Mission focus on the Enhancement of Human Life for all recipients of its activities and services in its fight against poverty in rural Communities. This is in pursuit of the mission that Jesus Christ in whom our faith stands, who Himself had come to give every individual abundant life and commissions His followers to follow in His steps.
FADO-T Vision: “Flourishing Communities with spiritually and socio-economically enhanced lives of people.”
FADO-T Mission: ‘’To holistically empower individuals, families, and communities through spiritually and socio-economically life-enhancing interventions for a strong and active population and the creation of the human and social capital required to overcome poverty and lead to flourishing lives and growth’’
Please read about the Ngora Hospice Project below
2. THE BRIEF HISTORY OF NGORA HOSPICE PROJECT:
The Beginnings: Ngora Hospice project was founded in 2006 by the Founder President of FADO-T, who burned with a passion to pioneer setting up a service that would provide holistic Palliative Care (PC) services in a rural setting to address the desperate situation of poor rural families having to helplessly watch the death in hopeless desperate pain and agony of their loved ones for whom the doctors had sent back to die at home with a confession that they could do nothing more for them! Most hurting was the experience sometimes of finding a human being discarded or abandoned in a dirty hut away from the public eye, not well-fed in squalid unsanitary conditions, so they could die faster! Some form of euthanasia! Often it left one to read into the situation the loud and clear message that said “We don’t have any skills and resources to look after you. Besides there is no help we are given to look after you. You should die quickly!” The practical realization of this passion came through the technical and financial inputs readily provided by Dr. Ann Merriman the Director of Hospice Africa Uganda (HAU) and the pioneer of PC services in Sub-Saharan African countries. Dr. Merriman advised setting up a Home-based PC service model that would provide PC services to those with life-threatening illnesses in their own homes. This is a model which she had proven through research that had been shown to be appropriate and the best for the rural poor who are normally inhibited from receiving appropriate needful services by exorbitant hospital bills and high transport costs. In addition, a survey had also established that most rural patients in Uganda preferred to die at home. She worked with and through the staff at the Palliative Care Association of Uganda (PCAU) the umbrella organization in Uganda for the provision of PC services; and provided all the needed support and the funding for training for the initial multidisciplinary staff team that made it possible to bring Ngora Hospice project into being.
FADO-T did not have any health trained staff, so a wise decision was made to start the project in partnership collaboration with the local Church of Uganda Mission Hospital, the Ngora Freda Carr Hospital that was already running a community outreach health Programme but did not include a PC service component. This collaborative partnership lasted 5 years and ended by 2011 when FADO-T assumed full responsibility to run the project having built up an effective multi-disciplinary team.
The Main Aim/Vision: To provide and make available Home-based Holistic Palliative Care services for ALL the patients with life-threatening illnesses in rural areas in Teso starting in Ngora.
The Main Objectives:
• To strengthen collaboration with PCAU so as to build the networking and close working relationships with other PC services providers in the country to enable the flow of benefits of shared information and knowledge as well as where necessary to share the use or pooling of resources to facilitate more to be done with the limited available resources. Fundraising can also be enabled in coming together as a consortium.
• To put in place through the provision of relevant training, a Multidisciplinary Team and to facilitate them with the required equipment, transport, adequate remuneration and constant retraining to improve skills and knowledge.
• To make holistic PC services available and accessible to ALL with life-threatening illnesses in the rural communities of the target area, initially to cover Ngora district.
• To improve the standards of the patients’ living conditions (of feeding, sleeping and general environment).
• To provide material, psycho-social and counselling support for the families of the patients to relieve them from the pressures of the burdens that terminal illnesses impose on their meagre material, financial, time, and energy resources.
• To share with both the patients and their families without coercion, spiritual messages of the Good News of the Gospel and the love of God who is the source of all life and who wants every individual person to live quality, meaningful and fulfilled lives here and now and then hereafter eternal life.
• To sensitize and educate both Communities and AIDS and HIV positive patients on how such patients can live positively and longer with their conditions, free from stigmatization and exclusion by those not yet infected, and also to die with dignity, hope, honour and in less pain.
• To construct, with the availability of funds, a building structure that will provide Offices for Project Administration; Patient Assessment Clinic; Day Care services and specialized facilities for the patients to be brought to give their Care Givers some rest, for change of atmosphere and to meet other fellow patients.
The biggest challenge that faces the revived Ngora Hospice project is inadequate finances. This financial challenge is like a big dinosaur that is giving a ride to all other lesser challenges, and it must be overcome to give hope of survival to the FADO-T Home-based PC services and even more so to the desperate needs of the critically ailing patients in the rural catchment area of its coverage! A genuine cry is for financial assistance to enable the required arrangements that give rise to preparations for readiness in post-COVID.
In brief the project being in its infancy is threatened by many formidable challenges that are taking advantage of inadequate finances. To deal with these secondary challenges, the revived Ngora Hospice Project desperately needs donor partners to come alongside and give the urgent assistance it needs for it to survive and continue to provide this critical service that has shown such a high demand especially by the rural poor and marginalised communities. The most aggressive of these challenges include the following:
• After COVID the Ngora Hospice project needs a Building to provide space for its administrative office work, staff meetings and drug storage; a room for patient assessment and registration; space for a Day Care facility to give relief to family care givers and provide change of atmosphere for patients and opportunity to meet other patients. Land exists only funds for putting up the required building are lacking.
• Currently the project does not have a multidisciplinary Team to provide holistic PC services. The Ngora Hospice project needs to build its own multidisciplinary Team through training then to be adequately remunerated and be well facilitated to be able to work effectively and efficiently after best practice models.
• Travel to reach places in rough roads and in all weather conditions is currently rendered very difficult to impossible due to lack of suitable motor vehicle transport. The Ngora Hospice needs to be provided with a suitable form of transport that meets the needs both of Staff and patients. This calls for an urgent need for a 4 x 4 motor vehicle”.
Ngora Hospice Project has been tested and proven to be a critical need that is capable of delivering good results. The one stone to kill the dinosaur together with the secondary challenges is FUNDING.
IAHPC has been a great partner for many LMIC advocating for access to affordable palliative care services and pain-relieving medications, giving direction and technical support when needed. Keep up the great work!
Our experience with IAHPC has been satisfactory in several areas of development of Palliative Care, mainly in the generation of public policies aimed at facilitating access to care for advanced chronic diseases in the health system and allowing the availability of essential drugs for control of pain and other distressing symptoms, IAHPC is always a strategic ally so that as a country and region we can advance in the benefits that palliative care brings to our population, the role of IAHPC is fundamental for the advancement of palliative care in the world.
They supported my attendance of the 21st International Congress on Palliative Care (ICPC), 2016. I'm also the IAHPC Palliative Care Advocacy focal person for Zambia.
I have worked in international hospice and palliative care for 20 years and was always impressed with IAHPC long before I joined their Board. They manage to touch countless lives through education, leadership development and advocacy efforts in ways that marshal their resources very wisely. In terms of impact for every dollar donated or spent they have the greatest influence of any organization with whom I've ever worked.
Great source of inspiration in palliative care world.
IAHPC truly delivers on its vision and mission.
It is an agile and active organization.
It is present at different levels. From training, research, support to different professionals, creation and access to good quality material for consultation. Different programs, resources and publications.
Above all, it has a very important role in advocacy, in making PC visible, and all of us!
IAHPC is the voice for the voiceless
This not for profit organization recognizes leaders and often helps unfold leadership qualities .
Supports us from different corners of the world to work towards alleviating suffering amongst our marginalized population .
Helps us work towards campaign such as “ Pain relief As a basic human right .
We become voices in international platform to echo the millions of voices that cry for help in accessing pain medication .
We feel empowered with the knowledge imparted ,and work with our government and stakeholders to solve local and international issues .
We work towards long term care , older person care and
With IAHPC we champion palliatuve and supportive care as a Universal Health Care agenda .
With IAHPC we speak for the unresolved pain amongst Refugee( FDMN ) . Be it The Rohingya or others .
We fight as frontline workers during covid and guidance received through Webinars .
We are grateful to be able to be a part of IAHPC
My membership in IAHPC is very important to me because it coincides with my personal mission. I believe effective pain and symptom relief and psychosocial support during serious illness is a basic human right, and this is not consistently occurring, even in developed countries. As a pharmacist, I struggle with the idea that people suffering with pain worldwide often do not have access to effective analgesics. This is just unacceptable. I am also an educator who has devoted her career to providing education on pain management and palliative care to a variety of audiences, across numerous platforms (open access, college level, post-graduate; didactic, experiential). I am strongly supportive of IAHPC’s mission to advance hospice and palliative care practices, education and research around the world, and I’m very appreciative of their efforts. Please continue your excellent work, never tiring, until we meet the ultimate goal of effective and efficient hospice and palliative care worldwide.
I am, Fazle Noor Biswas, working as a pharmacist in palliative care field since 2011.
In this last decade of palliative care journey, I have participated in many training, workshops and conferences on palliative care. In 2015, I have joined as an individual member of International Association for Hospice and Palliative Care (IAHPC). I am really grateful to IAHPC for giving me a travelling scholarship to attend 12th Asia Pacific Hospice Conference in Singapore July 2017. I have gained more knowledge by attending this conference. Specially, the workshop on the role of pharmacist given me an opportunity to develop my career in palliative care sector.
IAHPC, is one of the organizations and an international platform of the palliative care professionals with one common motive to work for the people with life-limiting illness, throughout the world.
I am proud to be a member of IAHPC and I will keep continue my membership with IAHPC. I would like to involve myself with the palliative care development nationally and internationally.
I started my membership with IAHPC in 2015 when I decided to engage myself in developing palliative care where I work first and in the future in my country. I live in Haiti and I am working part-time as a palliative care attending physician with the oncology team. Palliative care is not a well-known speciality in my country and we still don't have any national policy regarding palliative care in our country. Renewing my membership with the IAHPC helps me to have access to information about palliative care and also meeting other palliative care physicians. Since 2018, we are working with Dr Mike Gosey, a wonderful palliative care physician in the US, he helps us a lot with the training of our residents during their rotation and their annual training. We were able to know him through IAHPC.
Can you tell us why you renew your membership each year?
From a professional background of Anaesthesia and Pain management, I developed a passion for caring for patients suffering from unrelieved pain especially following cancer surgery in the 90s when strong opioid analgesics were unavailable. My involvement in palliative care increased as I acquired training at Marie Curie Hospice Centre (1995), Hospice Africa Uganda (2003) and became a member of African palliative care Association (2004). I later became a financial member of International Association for Hospice and Palliative care (IAHPC) as this gave me the opportunity to be part of the global palliative care stakeholders. The annual dues are affordable for me although I work in a developing country and I found convenient methods to remit the payment sometimes once in two years. Membership afforded me access to the IASP Newsletter which always provided current information on palliative care and easily accessible resources (including, articles, journals and books), advances in global policy and scholarship opportunities. Many of these are shared with my mentees, colleagues and students, some of whom have been encouraged to become IAHPC members.
Prof Olaitan Soyannwo
Visiting Consultant, Hospice and Palliative Care Department
University College Hospital, Ibadan, Nigeria.
Also, President Centre for Palliative Care, Nigeria
My name is Joseph Chisaka, a Palliative Care Physician and Lecturer at the University of Malawi-College of Medicine. I would like to thank the IAHPC for the Traveling Scholarship which enabled me to present our research work at the 6th International African Palliative Care Conference in Kigali, Rwanda which took place between September 17-20, 2019.
The conference helped me meet various people both scholars and providers from across the world where I learnt and shared a lot regarding our practice. I managed to link with some others where we planned future collaborative work in research and service provision. Some presentations at the conference answered different questions i had in palliative care and they will help in improving my practice.
I have returned from the conference motivated and equipped with new ideas to move my palliative care practice to higher levels as a Physician, a researcher and a Lecturer.
I am Olanrewaju Onigbogi, a Public Health Physician from Nigeria with interest in the public health aspects and community acceptability of palliative care in Nigeria. I was supported by the IAHPC to attend the International Conference of the African Palliative Care Alliance in Kigali. It provided a rare opportunity to learn and network extensively with co-researchers. I would always be grateful for the opportunity.
Traveling scholarship of the International Association for Hospice and Palliative Care is great opportunity to me to present our research work in palliative care to the international audience in the Oceanic Palliative Care Conference (OPCC) - 2019 in Perth, Australia.
Meet with experts, networking, and listen and read the research activities of international world-class palliative care have helped me to broaden my understanding of palliative care. I have already built up some connections with scholars in this event for future collaboration. That will be a great opportunity for me to initiate further collaborative research or commence palliative care educational activities for my nursing students as a Senior Lecturer in Nursing, attached to the Open University of Sri Lanka.
IAHPC is a fantastic organization to work with and we are proud to be associated with them for over 10 years. They have supported several of our film projects including on children's palliative care and adult palliative care in dozens of countries worldwide. We have also collaborated with IAHPC to create a series of inspirational short films showcasing their important work in global health. They are so great to work with. Highly recommended!
In 2017 two doctors Rita Kabasinskiene and Marija Inesa Poniskaitiene and spiritual assistant Lina Jakele of our Hospital received the grants from IAHPC to participate in the 15th International Congress of Palliative Care in Madrid. We were from one team so we decided to write you together in order to avoid recurrence. We are very thankful to IAHPC for the possibility to participate in the Congress. We have gained a lot of experience in different fields of palliative care.
The development of palliative care in Lithuania continues. We strive to contribute to this through our capabilities. In the Ministry of Health a new Order was prepared to supplement the old one. It expanded the palliative care team to include a psychologist and a nurse assistant; introduced a new term “Hospice” for our country and touched on some other issues. Fentanyl tablets for the treatment of breakthrough oncologic pain registered this year also. These drugs fully reimbursed to oncologic patients. It considerable have changed the quality of life of our patients.
Lina was the first spiritual assistant in palliative care. Thanks to her work, the spiritual mission service at our hospital has expanded significantly. It consists of a chaplain, assistant and quite a large number of volunteers. Lina is the curator of student spiritual nursing practice at our hospital and teaches palliative care at St. Ignatius College in Kaunas. Other organizations were also interested in spiritual help. Jakele became a public instructor after completing Last Aid courses in palliative care, conducted by German lecturers.
Rita and Lina give lectures in training courses on palliative care.
We enjoy that more and more volunteers become involved in Palliative Care. We give them lectures, train them.
Some months ago dr. M. I. Poniskaitiene has stopped working as physician, but she became very active volunteer in our hospital. She visits also some palliative patients at home. She raises constantly her professional qualification, deepens her knowledge in palliative care, popularizes it and participates in palliative care conferences.
Attending of the Congress influenced our work directly and improved our competence as physician, spiritual assistant and researcher.
We wish you all success in your meaningful activity.
Rita Kabasinskiene, Inesa Poniskaitiene, Lina Jakelė
IAHPC membership has had a positive impact for the entire staff and the service we offer. It helps us to increase the number of services and offering them with standards and high quality.
IAHPC had made possible participation of staff members in important international activities such as trainings, conferences, congresses which had enlarged the collaboration network with colleagues from all around the World. In these meetings we had been known with challenges, achievements and future plans for a better PC in the World. These activities have been particular accesses in development of PC in the region and our country.
The periodically newsletters sent to us from IAHPC, had given the valuable important information about everything that is happening in the PC field everywhere. We have used this important information in doing lobbing and advocating campaigns for PC in our country.
We have been lucky having these opportunity, and would like that more professionals working in PC to have facilities to learn more from each other and experts of PC from around the World.
Thank you to IAHPC for all you are doing to develop PC everywhere and to make it possible for every one!
I am grateful to the IAHPC for the scholarship granted me to attend my first Palliative Care conference ( EAPC 2019). with the aid of the scholarship, I was able to overcome the challenge of lack of adequate training and education in my chosen career. I had the opportunity to interact and collaborate with global palliative care providers. Thanks to IAHPC.....…...Oyinloye Oyebukola (Nigeria)
An IAHPC grant
helped me to upgrade my skills and knowledge in palliative care.
This translates into better patient care- this is the best way that I can repay this debt.
I have also worked to transfer the learning -teaching and training other doctors and nurses to deliver pall care in other LMIC .
Less than 4 percent Indians have access to palliative care- IAHPC is working hard to “ eat this elephant “
I received a scholarship to participate in the EACP 2019. Present my work about uncertainty in palliative care in Colombia South America, I met many colleagues, I learned a lot about palliative care and I will surely apply what I learned in my country. Thanks IAHPC
Sonia Carreño Moreno. Nursing Professor.
My name is Natalia Carafizi and I'm a specialist in palliative care from Chisinau, the Republic of Moldova.
I am most grateful to the IAHPC for the provided Travel Scholar Fellowship to attend the 16-th World Congress of the European Association for Palliative Care held in Berlin, Germany on May 23 – 25, 2019. It allowed me to present the poster entitled “Initiating the Development of Palliative Care Service in Transnistria”, which describes the activities, related to the development of palliative care through all the regions of Moldova, even those with the existed political and economical particularities.
I also felt very honorable to take part in the pre-Congress PACED session, which first time in the history of the EAPC Congresses took place and aimed the unification of the ex-USSR countries, where the current status of palliative care in each country apart was discussed, alongside with the existed barriers and options to overcome them.
The presented at the Congress scientific information was quite modern, either to be implemented into the daily clinical practice together with colleagues, to be shared with the local National Association for Palliative Care to use for development of further strategies or to be taken into account while improving medical curricula for both medical students and nurses.
I am very grateful to the IAHPC for giving me this wonderful opportunity, without which my attendance of the Congress and the gained experience would have never been possible.
Awesome experience with IAHPC as I got the traveling scholarship for participation in EAPC 2019. Support of scholarship motivate us to be engaged. Thank you IAHPC
My name is Elizabeth Namukwaya a palliative care physician in Uganda.
Thank you IAHPC for a traveling scholarship that enabled me to attend the European Association for Palliative care Congress in Berlin from the 23rd to 25th May 2019. This was a great experience for me as a palliative care physician and lecturer in Uganda. I was very impressed with a high standard of research at this conference and I came back home very motivated to do more research in palliative care of high quality. I also got a lot of information that I can use to teach medical students and other postgraduate student doctors. I also got information that will help me improve patient care as many of the day to day clinical puzzles I face were answered by research that was presented at the congress and some research findings presented increased my curiosity about different palliative care interventions. I was able to meet many other palliative care providers and researchers from all over the world and to get their contacts for future collaboration. After working so long with patients and teaching students my work had become very routine but this conference sharpened me and I feel revitalized to be a better physician, lecturer and to do more research in palliative care. I am grateful for all the opportunities IAHPC gives us as palliative care providers by enabling us to access several resources including journals with research in palliative care, palliative care books and for supporting palliative care providers to attend educational and research events which open our eyes to how care is given elsewhere and this enables us to evaluate our care in light of the information we get and it enhances our creativity. Thank you IAHPC also for the opportunities to meet other palliative care providers and a chance to meet renowned people in this field who inspire us to be better. Thank you to the great team which organizes all the resources and to the team at IAHPC which we communicate with on email who are very quick to respond and are very professional.
Palliative care in Albania is still a developing field that has to face great challenges.
This service is offering only by NGO’s.
The new units created by Ministry of Health at the Regional Hospitals do not have the right access and capacity to offer this service with quality and standards.
The palliative care is offered only for cancer patient and thus the chronically ill in advanced stages, suffer with pain and untreated symptoms.
Despite the information offered by PC teams, doctors and nurses are still reluctant to use the opioids to alleviate the pain; they have lack of skills in evaluation and treatment of pain.
Palliative care is not part of curricula at University of Medicine, there are only a few basic lectures in oncology subject.
The family physicians do not specialized in Palliative Care, even they are in continuous contact with this category of patients.
To face these challenges you need to have positive experiences, support and knowledge.
I have participated in a lot of activities about PC, including this Congress, that have helped me to enlarge my knowledge and professional competence in such e specific field.
This congress was very particular and worthwhile about the information that we share, for the networks we created with friends, colleagues and leaders of PC all around the world, for the discussions about our future challenges and for commitment toward this unique kind of care.
The presentations and information offered through posters and oral presentations by experts and colleagues has inspired and motivated me to continue my dedicated work in PC and to give my impute in spread and development of this service across my country.
All the sessions that I have followed have had valuable information for evaluation and management of pain and physical symptoms, the use of analgesics /opioids especially in pediatric ages.
I have realized the importance of education of healthcare professionals in PC and the various ways to find and attend educational sessions, the future plans of EAPC and also the importance of personal impute of every healthcare professional in enlargement and development of PC in his/her own country.
I also appreciated the friendly conversations with colleagues and experts of PC and the sharing of our experiences and values. This kind of communication sound very encouraging and inspiring for me because I realized that weall have to face the same challenges and to have the same commitment to be:” A voice, a vision; Palliative Care everywhere and for everyone”.
I want that all this experience to influence my work and to improve my competence like nurse and trainer in PC.
The participation in the EAPC congress was a privilege, a pleasure and a wonderful experience and I owe a debt of thanks to IAHPC for the traveling scholarship that they offered to me.
I would like to thank the IAHPC for their traveling scholarship. This had enabled me to attend the 3rd International Children's Palliative Care Network Conference in Durban, South Africa on May 3rd 2018. This 4-day conference was a great opportunity for networking. Listening to and exchanging experiences with people in the same field from different parts of the world had widened my perspective on how to further develop palliative care for children within my institution and in Malaysia. The plenaries and breakout sessions have given me many ideas on paediatric palliative care research that can be carried in Malaysia. Improving research in palliative care would be my priority after the conference. Thank you again, IAHPC!
I want to express my gratitude for the scholarship and to assure you that the benefit of this is enourmous for those who cannot afford to pay for such a conference, but also for those from developed countries who can learn from people from poor resource countries who manage to develop services with limited resources.
This bursary allowed me to participate in the ICPCN Annual Board meeting where we established the Strategic Plan of Developement for the next 3 years, and did discuss other current organisational issues..
Also i could attend the ICPCN Conference where I did find out news in different area of PPC from prestigious lecturers. This information will help me in my practice in the care of about 160 children needing PC and I will share the news with our staff.
Another gain was the network with international community of professionals and establishing links which can be helpful for supporting each other with difficult cases, with advocacy, research, etc. I did strengthen the links with colleagues from all over the world.
I was honored that the study which we did in Hospice Casa Sperantei Brasov was accepted as an oral presentation in the section Service Delivery. So we shared from our experience which services are most needed and more efficient. The study was very welcomed and was followed by discussions in the session moderated by Joan Marston (South Africa) and Sat Jassal (UK).
In order to disseminate the knowledge received in the Conference, I will send the information from the book of abstracts to the people from our national and regional network of PPC and I will include the up-to-date information in the courses for doctors, nurses and other professionals, courses which I teach in Romania and in the surrounding countries
The process of applying for scholarship was clear and Genevieve Napier managed very well the selection process and she was always ready to assist me with my questions.
So a big thank you to IAHPC for this bursary, and I hope you will continue the good work!
The world over, children needs palliative care help to achieve improved quality lives. The burden is even bigger in Sub Saharan Africa and unless something is done to help this region, its children suffer and die with pain. I learnt that with proper education and care resources, many children can live a pain free life and their families and communities live better without guilty feelings too, the 'what ifs' or 'if maybe we had done this'
I am deeply grateful to IAHPC for giving me a travelling scholarship to attend the 3rd ICPCN conference in Durban, South Africa.
This scholarship allowed me to present the workshop: “Accompanying the suffering stranger”. An aware exploration of the existing genuine tie between the health worker and the patient.
This experience has turned into a great professional development. And it has allowed me to create new ties to continue growing into a global network with the objective of providing the highest standards of care to those patients with life-limiting illnesses and their families.
Martín I. Mindeguía.
Physician specializing in Paediatrics & Palliative Care – Gestalt Psychotherapist.
Buenos Aires, Argentina.
I am Dr.Lalchhanhima Ralte, a public health/palliative care physician from Mizoram, NorthEast India. I am a member of IAHPC since 2012 and through their scholarship program i have been given the opportunity twice to attend Palliative Care Conferences - Palliative care world congress in Montreal Canada 2012 and quite recently World research congress of the European association for Palliative care in Bern Switzerland 2018. These are conferences that palliative care physicians like me wants to attend annually for updates but impossible due to the huge financial costs involved. Those of us from developing countries are hugely indebted to IAHPC for giving us the opportunity to learn from the best, network with like minded colleagues from different parts of the work, enhance our skills and knowledge. Thank you IAHPC and donors, who have made it possible for Doctors like me, living in a small remote place in the Northeast corner of India, who without IAHPC, would have never had all these opportunities!
I am so thankful to IAHPC for the traveling scholarship to attend the 3rd ICPCN Conference 2018 in Durban, South Africa. I’m palliative care physician with no experience in children’s field. Being present in ICPCN Conference thought me children’s palliative care is not downsizing medications dosages. Although as a clinician expected to learn more about symptoms’ assessment and management. The conference was especially concentrated on inspiring audiences from different countries for "stepping out of their comfort zones" and being more active in children’s palliative care. Through the conference, I met people from different specialties who work for children and had a chance learning a lot from their amazing experiences. I have also heard for the first time about ICPCN website and decided to translate online courses for children’s palliative care to Farsi for encouraging Iranian nurses and physicians for working in this new field. Thanks again to IAHPC for making my journey easy.
Mamak Tahmasebi, MD
I am highly impressed with the functioning of IAHPC which is trying to address a very noble cause of relieving the sufferings of the terminally ill patients of Cancer & other chronic illnesses; that too Globally. The Scholarships provided to the palliative care professionals helps in exchange of knowledge facilitating the transfer of the best practices throughout the World.
My best wishes to IAHPC inall future endeavours.
Keep up the Good work.
My name is Vilma Tripodoro, I am palliative care physician and researcher in Argentina. I would like to thanks the IAHPC because I went to the EAPC RESEARCH CONGRESS, in Bern. It was my first time in an European Research Congress and it was a great opportunity to share my work with colleagues and to be in contact with researchers from Europe and beyond. In addition, Bern is an amazing city and I enjoyed a lot. Thank you very much IAHPC for this travelling schollarship!
I am so thankful to IAHPC for the traveling scholarship to attend the ALCP Congress 2018 in Santiago, Chile.
During the congress, I met people from all over Latin America working in Palliative care. It was amazing to share stories of our challenges and victories in the process of developing effective programs in our own countries. I was encouraged by the dynamic speakers who shared real life experiences, addressing the humanistic approach to handling the challenges of dealing on a daily basis with terminal illness, especially in Pediatric care. I left the conference with renewed strength to face the challenges, equipped with new tools to teach and advance education, and with lots of new ideas to implement.
Working diligently for years to open a Hospice facility in my country, I was able to visit a facility and spend invaluable time getting to know the administrators and staff that run a local hospice, Clinica Familia, in Chile. They openly shared their knowledge and experiences with me, and I now have new insights on how to make my vision a reality.
Diane D. Sabado, Dominican Republic
Dear all, I am Juliana Suarez from Colombia, a psychologist who is finishing the second year in the Specialization of Palliative Care.
Thanks to the support of the IAHPC scholarship I had the opportunity to present my degree project in the IX Latin American Congress of Palliative Care. I could understand in a greater depth the challenges in Latin America in the palliative field.
At the same time, I met several scholarship holders from the IAHPC from different countries and we had the opportunity to discuss thoughts and opinions about the practice of Palliative Care in each country.
Thanks to IAHPC for giving me this wonderful opportunity full of learning and experiences.
As a palliative care physician, I recently traveled from Tennessee to Haiti after receiving a grant from the IAHPC Traveling Scholarship Program. Palliative care is in his infancy in Haiti and I was honored to provide educational support to a Family Practice Residency training program in St. Marc. My experience was both rewarding and humbling. IAPHC made my journey easy - comfortable accommodations; convenient on ground transportation and; a wonderful and caring host.
Overall, this was a wonderful experience and I hope to return to Haiti soon. Thank you IAHPC for your great Traveling Scholarship Program.
Michael Gosey, MD
I am Yeva Asribabayan, clinical psychologist from Armenia and work to develop palliative care here. I joined IAHPC on January 2017 and was very impressed from the first moment to receive access to my personal page. So many materials! And so many possibilities to contact colleagues from around the world. I was honored to receive IAHPC travel grant to attend at EAPC 15th World Congress in Madrid, Spain. It was a fantastic opportunity to meet colleagues from all corners of the world, learn more about their experience and share my own. Currently, our team is focused on the development of the educational field in palliative care. So, I found many contacts and received interesting feedback about this. And the most impressive part were the meetings with people who have devoted themselves to the development of palliative care, and the possibility to learn from them. Last but not least, I would like to mention very kind and careful attitude toward every scholar, which makes you feel very comfortable and important.
Thank you IAHPC team for giving me so much inspiration!
The WHO defined palliative care (PC) as: "An approach that improves the quality of life of patient & families facing problems associated with advanced life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial and spiritual problems”. And the following are the bases for PC:
1) Provide PC service through an integrated multidisciplinary team consisting of physician and nurse, psychologist, religion scholar, social worker, clinical pharmacist, dietitian, physiotherapist. The team is led by physician. Up-to-date knowledge and expertise in pain management and symptoms relief are the key features of the team.
2) The PC team must have high communication skills and able to professionally handle difficult communication scenarios. The team is expected to thoroughly know about end-of-life care; Being competently able to balance between various ethical principles e.g. autonomy and beneficence.
3) The team is committed to relieving patients and their families from suffer at any stage of their illness.
Obviously, there are gaps in area of PC and shortages of well- trained health/ care providers in Iraq, a war-torn country for the last thirty five years. In spite of some of the initiatives in this regard, still there is long way to pass through in order to better care of our patients who are suffering from an advanced illnesses.
With the support of the IAHPC, I got the opportunity to attend the 5th International Public Health & Palliative care Conference, Sep. 17th – 20th 2017 in Ottawa - Canada and I gained the following:
1. Scientific update in palliative care from the sessions and posters.
2. An opportunity to closely interact with the experts in public health and palliative care who joined this meeting.
3. The knowledge and experience about establishing the palliative care at the primary health care facilities in different nations and how we can apply it in Iraq.
4. Sharing the modest experience that was developed in our country with the colleagues from other nations through conversation and discussion.
I've attended to the Public health and palliative care Conference in Canada, it was a great experience where i get a lot of new ideas and knowledge to bring back to my country.
I had also visited some hospitals in another city and attended to the Canada palliative care and hospice conference, and everything was in part because i get the scolarship from the IAHPC.
Thank you very much for making this possible!
I was granted a travelling scholarship from IAHPC to join a conference in Singapore and learnt a lot from there.
Thank you so much for this great opportunity!
Hello, I'm Pati from Georgia, MD, former International Pain Policy Fellowship program fellow. Currently PhD student, studding barriers to opioids availability and accessibility in many respects. Thus attending research program of EAPC Congress was very important for mine future search; The International Association of Hospice & Palliative Cares' Traveling scholarship gave me ability to attend the 15-th world congress and gain new knowledge and skills in Palliative Care and relevant field of search; acquired knowledge will help me to finalize my work , publish the results in international peer reviewed journals to make the voice of suffering in pain, with relevant problems sound-able for decision makers. The IAHPC team was very supportive in all aspects of communication and spreading information.
I am a palliative care nurse in Cameroon, who wanted to be more efficient in providing palliative and supportive care to people plaqued by life-limiting conditions. Conducting an online research for training programs on the topic landed me in IAHPC where I immediately contacted them.
I later signed up membership and have subsequently benefited enormously. Inhabitants of my community with life limiting health conditions of cancer, AIDS, diabetes and others now receive better care and support.
This gives me a deep sense of gratitude to IAHPC, self satisfaction of attaining my career dream and above all, my joy is complete knowing that I can be counted upon in my community among those who contribute to a better world especially for the dying.
I am a nurse in Armenia and I got to know about IAHPC when I was looking for sponsorship for participation in Advanced European Bioethics Course "Suffering, Death and Palliative Care" in RadboudUniversity Medical Center, Netherlands. I joined IAHPC and was provided with a travel scholarship to attend it in February this year. I am very grateful for the work done by IAHPC in trying to promote hospice and palliative care throughout the world and especially the support given to developing countries. I believe that by empowering as many health workers as possible in palliative care and in relatedfields even with limited resources we can go far in providing quality of life to patients with life threatening and life limiting conditions. I currently work at ICU and together with my team try to provide a holistic approach in our care of the patients. I hope that IAHPC continues to get necessary support in-order to continue this worthy goal.
In October 2016, the IAHPC conducted a training workshop in Barbados. I am a pharmacist and I represented my country as the Chief Pharmacist for Belize. It was my first point of contact with this organization. The workshop was well organized, and a wealth of information was shared in the short time there. This is due to the exceptional organization done by the coordinating team.
I walked away from the workshop determine to ensure that our palliative care patients access the necessary pain management medications whiles ensuring that the concern for these medications to be diverted into the illicit channels are maintained in the balance. Since my return , I, along with the palliative care group for Belize, met with the Texas Palliative care group, in which we planned the 2017 training session in which a section will be allocated to the re-sensitization of the Pharmacists to the care and management of these patients.
At this October 2016 workshop, the love for these patients by those involved in their care was felt. The recognition of our reliance and dependence on God for all we do,was clearly demonstrated. I want to thanks IAHPC for inviting me and I pledge to do all that I can in my country to the advancement of their care, by ensuring access to these medications.
IAHPC is playing a crucial role in the building of palliative care network across the globe.
The vision was clearly noticed in the Barbados conference.
The existing Data presented and the needed future plans for the carricom islands among the participants was very note worthy.
Even though the sustained development will face plenty of challenges we can work together with IAHPC and fellow members in achieving the target.
We indeed have started working in a small way towards the goal.
An initial contact with higher administrative members have been sought.
we certainly would like to follow the initiatives taken by Dr Dingle from Jamaica.
in Obtaining QOL and adequate pain management as the primary goal.
On behalf of the my colleagues from Trinidad and Tobago i would like to extend the gratitude to whole staff IAHPC and special regards to Genevieve Napier, Dr katherine,
Dr Liliana De lima, Dr lukas Radbruch and Senior editors .
Dr Shashi Ramesh
This year IAHPC sponsored a conference in Barbados that was for invited guests of 11 Caribbean countries. It sought to have us understand the barriers to opioid availability in our countries and develop SMART action plans. Opioid availability is important for patients with severe chronic pain and is the gold standard.
The conference was well organized, filled with knowledgeable speakers and kept us interested throughout. The shared experiences were invaluable and the mentorship provided was key to rounding off this great venture.
It was a pleasure to have attended this conference. IAHPC did a great job.
IAHPC plays a huge part in promoting clinicians resilience through sponsoring attendance at relevant conferences. I am Head of Counselling and Support Services at Island Hospice in Zimbabwe. Research we conducted into Resilience in our field of work a few years ago showed that - Resilience is boosted by networking with colleagues in the field, and ongoing education to increase both competence and confidence. Thank you IAHPC for sponsoring my attendance and presentations at the APCA conference August 2016.This conference was energizing and reaffirming in meeting so many diverse yet connected specialists in the field of palliative care.
I am a doctor in Zimbabwe, and I got to know about IAHPC when I was looking for sponsorship to do a diploma in Palliative medicine with University of Cape town. I joined IAHPC and was given a travel scholarship to attend the second contact week at UCT in June this year. I am very grateful for the work done by IAHPC in trying to promote hospice and palliative care throughout especially the support given to developing countries. I believe that by empowering as many health workers as possible in in palliative care in our setting even with limited resources we can go far in providing quality of life to patients with life threatening and life limiting conditions. I am currently working at a cancer centre and together with my team try to provide a holistic approach in our care of the patients. I hope that IAHPC continues to get the much needed support in-order to continue with this worthy cause.
I got a chance to visit my first ever International research meet. Thanks to IAHPC Travel grant, which supported my visit and registration in conference. The whole process from application for grant to receiving of grant was very smooth and transparent. Attendance at this conference helped me making new contacts in Palliative care, awareness with research ideas of western world. I would definitely thank IAHPC for this.
When my husband was diagnosed with lung cancer, we were told by the medical staff that he was incurable and could not offer any treatment and referred him to hospicecare. We were devastated and thought this was denying him care. I found IAHPC through the web, called and talked to a staff member who listened to me, clarified what hospice care is, gave us information about hospices in my area and provided ongoing support. It seem very little, but it meant the world to us.
I cannot imagine that there is a nonprofit anywhere in the world whose work is more important than that of the International Association for Hospice and Palliative Care (IAHPC). Under the ingenious, tireless leadership of Liliana de Lima, IAHPC is reponsible for bringing pain relief and comfort to dying patients in developing countries around the world. The IAHPC is the leading organization in the world promoting palliative care in poor countries. They have made it possible for countless clinicians from poor countries to gain the knowledge and skill necessary to treat distressing symptoms in dying patients. In addition, the IAHPC organized and implemented a rigorous project that resulted in a list of essential medicines for palliative care that has set the standard for palliative care around the world. IAHPC also published the first and still the most important handbook on palliative care for the poor. Finally, the IAHPC website is the single best source of palliative care training materials, guidelines, and other documents in the world. Without the IAHPC, the field of palliative medicine would not be nearly as advanced as it is, and tens of thousands of poor people with life-threatening illnesses would not have had their suffering relieved. I strongly recommend the IAHPC for prestigious health award.
I was invited by IAHPC to participate in a process to develop a list of Essential Medicines in Palliative Care. The resulting list includes all those medications that are needed to treat the most common symptoms in patients with life limiting conditions and diseases. I was able to participate in an online survey and then in a face to face meeting organized by IAHPC where the List of Essential Medicines was finalized and approved. This list has served me and my country well: it was used as the model to develop the medicines policies for the national palliative care program.
IAHPC is a key partner in the international advocacy and education process to build global palliative care capacity. As a participant in this process, I have found the services offered by IAHPC, partcularly the International Travel Scholarships to be invaluable to bring members together; the resouces at the IAHPC website to be easily accessible and very useful to many of the people I am working with; and now the access to palliative care journals to be a key resouces, as physicians and nurses in most countries do not have easy access to literature or educational resources.I hope IAHPC will dramatically increase its reach and membership in the coming year.
I am originally from Eastern Europe and when I saw how IAHPC was supporting nurses and doctors from Russia I decided to donate. I am not a health care professional but I enjoy reading their newsletter and learning about their efforts in many countries of the world.
When I returned to my native Jamaica in 2002, after spending 12 years in the UK, working in Oncology and Palliative Medicine, I found that I was pretty much alone in promoting palliative care in Jamaica at the time. I then discovered the IAHPC which seemed to represent the "little people". This organization provides support, information, education and scholarships for health professionals principally from the developing world. I was a lucky recipient of such a scholarship in November last year when the award enabled me to attend an important educational meeting in Houston. The IAHPC is a champion for those of us in the developing world trying to advance hospice and palliative care in challenging circumstances.
We started with the Palliative Care Program 5 years ago, when nobody in our Institution had heart about Palliative Care before. At the beginning we hadnÂ´t patients and therefore it was really difficult to get financial resources to support the Program, and at that moment the International Association of Hospice and Palliative Care (IAHPC) played a key role giving as the possibility to receive 3 years of financial support as a Faculty Development Program. At the beginning we were only one physician and one psychologist. Today we are four physicians, three nurses and two psychologist, and we work together with kinesiologist, members of the pastoral and of the psyquiatry department. But IAHPC is not only a source of funding, it’s also a great source of inspiration and education for all the professionals who are working in the palliative care field around the world. Personally, the opportunity to have been supported to attend international palliative care meetings and to know Liliana de Lima and Eduardo Bruera, was fundamental to believe in the spirit of Palliative Care represented by the IAHPC, a discipline which work to improve the quality of life of patients with advanced life-threatening conditions and their families. In our world it’s not easy to find Institution really moved by such altruistic motivations.
IAHPC is a very important organization to provide knowledge and practical help of palliative care. I've received the journals from it, and the articles in them can tell me the progression on palliative care. It also give me some oppotunities to get the scholarship to go abroad to enter the meetings on pallaiative care.
Like many others, I new IAHPC receiving the benefits it offers to the palliative care community - I used the word "benefit", but the right word is "opportunity": IAHPC gave many people - including me - the opportunity to take a look at the modern world of palliative care. I had the opportunity to become a board member, to know the institution from the inside and to participate in some of its projects. Currently it is the place where I join people willing to move forward - and this is my privilege.
I have been associated with IAHPC since early days of my career in palliative care. The organization has helped me in many ways to enhance my activities in the field. It is one of the best websites to access any information on palliative care. The newsletter is the highlight and I look forward to reading the each publication. I have also seen many of my other friends in developing countries getting hugely benefitted by various scholarships they offer and in that sense IAHPC is an organization which is truly global with an access to all.
I think IAHPC is a wonderful organisation which aims to spread the message of palliative care across the world. In this venture it helps the people to do courses in palliative care who otherwice will not be able to study becasue of the scarcity of resources. They have provided us with scholarships for doing palliative care courses in Trivandrum Institue of Palliative sciences. I know some people who has awarded with travelling scholarship by IAHPC which is very great. The IAHPC memebrs has taken keen interest to visit our organisation at Trivandrum,(Trivandrum Institute of Palliative sciences). I hope IAHPC will be able to more actively with supprot well wishers.
IAHPC has been a great source of inspiration for all of us in Pallium India. The Executive Director Ms Liliana de Lima visited our clinic in Trivandrum and went to the villages with our home care team. She showed great appreciation of our work and made some very impressive presentations about palliative care to a large group of doctors and nurses
This is a wonderful organization helping people all over the world.Through their news,letters we get to know what is happening in other parts in the field of palliative medicine.Their travel grants and scholarships help people from low income and non developed countries attend the conferences and congresses in palliative medicine.
IHAPC is a very important organization to provide knowledge and practical help of palliative care throughout the world. Its bridges developing and delveloped world in a very important way. The membership structure and the way how IHAPC has membership fees reflects the philosophy. The homepage is a powerful tool to support many people around the world. Initiatives such as best practises for palliative care highlight also how IHAPC aims to make a difference at a very basic level at every patient throughout the world. Initiatives how to promote opioid availability in many many countries are of outmost importance. IHAPC has also the talent to liase with other organizsations with the main goal to make a difference. I am proud to be part of this organization and I am very impressed and thankful how it developed.
What qualifies an organization to be called truly international? A truly international organization cannot really ignore the needs of developing countries which form at least 75% of the World’s population. The International Association for Hospice and Palliative Care (IAHPC) stands out in the global health care scene due to its efforts to relieve pain and suffering in the developing world. I have the following specific points to make in support of the above statement: 1. It has a graded membership fee structure, by which a member from a resource poor country has to pay as little as 10 dollars a year, as against a member from an affluent country having to pay more than five times as much. 2. It has established traveling scholarship & fellowship programs as well as faculty development grants which all have helped the poor. 3. It has created several precious resources (like Essential Medicines List) which have helped people the world over.