This article discusses the work of three of the projects, each funded by the Department for International Development (DfID). Each project has a different structure and its own distinct outcomes, but all have themes of empowerment, training and advocacy work to achieve their goal.
Since 2008 our international project work has gradually grown from one to four large programmes, and with two or three new projects being developed, there is a lot to keep us busy. It is exciting to be part of such programmes, where both successes and challenges keep the momentum going.
Our first large programme began in partnership with The Shepherd’s Hospice in Sierra Leone, when we secured funding for a project to support community involvement in providing health care and in highlighting care needs to the government. The project works across 8 districts, training government healthcare workers and community volunteers to engage the community in care for people living with TB and HIV. TB is relatively simple to detect and treat and so is a good mechanism to promote confidence in health care systems, and with a high co-infection rate with HIV, it is a good access point to enrol people who need it for palliative care. The districts health staff have been equipped with basic palliative care skills, but The Shepherd’s Hospice, based in Freetown, is the only legal prescriber of oral morphine in the country. Wherever possible (e.g. when distance allows) people are referred to The Shepherd’s Hospice for more in-depth support. It is the hope that this project is setting down some basic building blocks to allow full palliative care to be rolled out across the country.
The second project we embarked on has an entirely different feel to it. Together with our partners, the African Palliative Care Association (APCA), we are hoping to improve access to pain and symptom controlling medications across 6 east African countries – Malawi, Tanzania, Ethiopia, Zambia, Rwanda and Kenya. The project operates at a high level, promoting changes in national systems and working practices. Small grants are provided to the national association in each country. These grants are used for delivering training on opioid use and pain management to doctors, health staff, and hospital management. Grants are also used to support the advocacy work of the national associations in order to improve the availability and accessibility of opioids. We find that this project, by allowing flexibility in the approach taken in each country, complements the work of others to achieve some fantastic results.
Finally, in 2010 we began our third DfID funded project. Working with the International Children’s Palliative Care Network and in-country partners we are supporting the development of children’s palliative care in India and Malawi. The project harnesses expertise of in-country partners to integrate children’s palliative care into existing health services. In Malawi this means training staff from paediatric teams in 3 central hospitals in palliative care. In India, the team have partnered with an HIV centre in Mumbai and a rural health service in Maharashtra. The experience and learning at service level is fed into policy, curriculum and advocacy work, with the aim of promoting sustainable change.
Within each project, our partners manage the day-to-day implementation. They have the skills, knowledge and relevant experience and of course are based closer to where the activities are happening.
Our role at Help the Hospices (HtH) is to support and guide the overall structure of the project. We have provided training and guidance for our partners on strategic planning, monitoring and evaluation, compliance, reporting to donors and sharing lessons learned. Our partnership helps to improve the capacity of our partners to meet the donor requirements. The international nature of our collaboration on projects like these brings different perspectives to a project and can help solve logistical challenges. One of our partners has said, “Help the Hospices has an advantage of knowing the ground well as far as palliative care is concerned… we are in touch with HtH and not [the donor] directly [which makes it] easy for us to explain, plan and follow up things with HtH, who understand [the situation]…’
Being based in London, we are a step away from the action so it would be easy to feel disconnected. However, frequent calls and emails help us keep in touch, and annual monitoring visits to each project site are invaluable for understanding challenges and progress.
There are of course challenges. They may be internal challenges; did we plan and budget accurately enough? How do we manage competing workloads of all the partners? How do we communicate when phone and internet lines are down? How do we know we are really making a difference? Then there are external challenges that are totally beyond the control of the project, but yet can have a huge impact on what we are trying to achieve. For example, in Sierra Leone, a huge gap in availability of TB drugs meant that the project could not enrol any new patients, and were struggled to support those already involved. In India, health care workers trained by the project get relocated, taking their training with them, but out of the project. Re-training and initiating in palliative care must start again.
But it is the successes recorded through the annual evaluative monitoring that keep us excited about the work and pressing forwards.
- Just under 700 children have accessed palliative care services as a result of the project in India and Malawi. Previously these services were not available.
- In India professional bodies such as the Directorate of Medical Education and Research and Maharashtra University of Health Sciences are engaged in CPC, and have collaborated with the project for a training of trainers programme, designed to facilitate the roll-out of children’s palliative care within the undergraduate curriculum.
- In Sierra Leone 21 support groups for people living with HIV are meeting and helping to raise awareness and combat stigma faced by people living with HIV
- 608 HIV patients have been registered at The Shepherd’s Hospice in Sierra Leone, compared to just 51 at the project start
- In Rwanda, the advocacy small grant enabled members of the national association to attend the policy consultative meetings where they shared the importance of palliative care and the need for a palliative care policy with policy makers. This helped contribute to wider efforts in-country which resulted in Rwanda now having a stand alone Palliative Care Policy
- In Tanzania a mentorship programme coordinated by the Tanzanian Palliative Care Association, supports health professionals who have been trained in the use of opioids and who are prescribing and dispensing oral morphine for pain management for People Living with HIV and AIDS. This is contributing to morphine roll-out across the country
- In India and Malawi, regular focus groups have been used to empower and inform children about palliative care and their rights, and also to provide space for children to feed into how they experience the project activities, thereby informing and hopefully improving programme design.
It is great to be able to contribute to the development of palliative care in many different ways. Working through international partnerships in particular is very rewarding. Our partners work tirelessly to lead and drive the projects forward ensuring their ongoing success. And we are constantly learning, adapting our approach and working style to provide the best support we can for a strong and productive partnership. We hope that this work can continue, and with a few projects in the pipeline we have our fingers crossed for further funding and strong international partnerships in the future.