INTERNATIONAL HUMAN RIGHTS DAY, 10 DECEMBER 2018
“Palliative care is fundamental to health and human dignity and is a basic human right. It is highly effective in managing pain and physical symptoms and should be delivered with curative treatment for people with life-limiting and life-threatening conditions”.
The formation of the “Association Des Soins Palliatifs de Guinée” (SOPAG) came about when 14 Guinean nationals had the opportunity to work on board the humanitarian medical Mercy Ships during its time in Guinea from August 2012 to June 2013.
The Guinean nationals, led by Madam Dounor Marie Tonguino interacted closely with Ms. Camilla Börjesson, who headed the Palliative Care department on board the ship. As the Mercy Ships could only provide services for a limited period of time, Marie, though not a trained nurse by profession, consulted with others to initiate local palliative care services in Guinea, especially considering the needs of the patients who would soon be left in pain in the absence of continuing palliative care.
Through these consultations, a pioneering group of 14 people signed up to form the palliative care association in Guinea known as “Association Des Soins Palliatifs de Guinée” (SOPAG), who received their introductory training in palliative care on board the Mercy Ships facility, facilitated by Camilla Börjesson and her assistant Emma O’Reilly from England. The association brings together stakeholders form different backgrounds including government, NGOs, community and faith based organisations.
Since then, Camilla has continued to return to Guinea annually to conduct training, and this has further strengthened the capacity of SOPAG. In addition, 2 SOPAG team members have successfully gone through the Palliative Care Initiators’ Course in Kampala also through support from Camilla. Thus, patients started to access palliative care services in Guinea.
Despite limited financial and human resources, SOPAG conducts several activities in the delivery of palliative care services.
SOPAG’s key activities include:
- Home visits to patients, counselling, and medical supplies,
- Spiritual support and prayers for patients (if they so desire it);
- Advocacy and lobbying campaigns for the acceptance of the concept of palliative care at community and national levels;
- Humanitarian and social support to needy patients in the form of rent, food, and others.
This range of services ensures that people with life-limiting and life-threatening illnesses receive holistic support.
Successes and Challenges
SOPAG has registered a number of successes since its formation and these include, among others;-
- Over 600 patients have received palliative care services to date through SOPAG.
- SOPAG has hosted a number of key stakeholders as they were making initial contact for the development of palliative care in Guinea. These include Hospice Africa Uganda and the International Regional Director for Human Rights Watch, Diederik Lorhman;
- Training of 2 health care professionals in the Palliative Care Initiator’s Course in Uganda.
- On 22 September 2018, SOPAG celebrated the official opening of a day care center for palliative care, the first of its kind in Guinea;
- In October 2018 there was a commemoration event for the World Hospice and Palliative Care day, with participants that included Ministry of Health Guinea for the first time.
Some of the challenges faced by SOPAG are;
- Difficulty in getting health professionals on board to support and facilitate PC development;
- Limited number of team members who are trained in palliative care;
- Inadequate human and financial resources for running programs, including lack of allowances/salaries for staff.
- Lobbying to get the Ministry of Health and Sanitation to include palliative care in the National Health Policy of the country.
Sustainability Short-term plans
The monthly membership subscriptions contribute to sustaining SOPAG activities, together with donations received from Camilla Börjesson and her family. However, SOPAG is still seeking to widen its resource base to support short to medium term plans that include;
- Scaling up palliative care services to improve accessibility and to reach more patients in need in all parts of the Guinea;
- Recruiting and training more volunteers and health care workers in palliative care;
- Strengthening partnerships with government and other civil society and technical partners;
- Access to pain drugs like morphine;
- Office equipment;
- Advanced training in palliative care;
- Resources for volunteer motivation e.g. stipends.
SOPAG is committed to continue working with Ministry of Health & Sanitation until the right to palliative care is enshrined in national primary health care documents and agreements, and until provisions for palliative care are made on the national health budget.
For more information on the Association Des Soins Palliatifs de Guinée” (SOPAG), contact Emmanuel Joseph K Dunnor on firstname.lastname@example.org