Advocacy takes specialised skills (Africa)
When the African Palliative Care Association (APCA) was launched in 2005, “we had no office, nothing,” says Dr Faith Mwangi-Powell. “That’s how I came to APCA — alone. So you start from the beginning. One day you are executive director, the next day you are mopping the floor. The first staff person I hired was a driver, because I needed to move around a lot.”
At first it is more important to have people with enthusiasm and commitment, but quickly the organisation needs people with the requisite skills. Associations also need to build momentum from small initial successes.
Advocacy in the public arena requires particular skills, she says. “You need to be knowledgeable, passionate and persistent. You need to know what you’re talking about — what is the heart of palliative care, but also what are the solutions to the problems you identify.” Not everyone in the organisation has the ability to be an effective advocate, so it is important to identify that one person who can be a confident, articulate and persuasive speaker.
“The person who launched the organisation may not always be the right person to do its advocacy,” Dr Mwangi-Powell says. She was not an expert on palliative care at first, but she was willing to ask a lot of basic questions that others might not have thought to ask. “That’s how it works: today you are asking the questions, tomorrow you’ll be answering them,” she explains.
“When you meet with someone at the Ministry of Health, start with what they know. Get them to talk about their own families. In Africa, everyone has been affected by HIV/AIDS. Ask them how they dealt with the losses in their own lives. It’s not rocket science but there is an art to making people feel comfortable enough that they can engage with the issue from within their comfort zone.” In every country where APCA advocates, a somewhat different approach is needed. But overall, “we are looking for African solutions to African problems, using resources that come from Africa.”
The Action Guide for Advocacy and Citizen Participation
By Just Associates
Social change starts with a group of motivated individuals. This comprehensive guide combines practical action steps with a sound theoretical foundation, including chapters on a range of topics such as "Politics and Advocacy", "Mapping Advocacy Strategies" and "Messages and Media". It will help you understand how social movements organise people-centered politics from planning to action.
The strategy has been created by the Canadian Hospice Palliative Care Association is meant to mobilise providers, patients and families to ensure that every Canadian has the right to die with dignity, free of pain, surrounded by their loved ones, in a setting of their choice.
Hospice Palliative Care Association of South Africa (HPCA)
Hospice and Palliative Care Association of South Africa's website shows how a national association organises its advocacy efforts. On this page, you will find the strategy the organisation uses and how the subcommittee for advocacy is organised.
At its most basic level, advocacy is standing up for a person or cause in which you believe. It starts with the individual and from there it can grow to eventually affect a nation.
Responsibilities that palliative care professionals consider average, others would find remarkable. It is for this reason that their stories of providing care to seriously ill patients need to be shared. Representatives at different levels need to hear about the patients from whom you have learned important lessons, the families you can’t forget, or the inexplicable feeling when you know you’ve made someone’s life better.
Providers talk a great deal about compassionate end-of-life care; however, compassion alone is not enough. For this reason, NHPCO launched Hospice Advocacy: Telling Your Story, Making a Difference. Through this effort, end-of-life care providers across the United States effectively advocate for hospice care to reach all levels of government, from city mayors to the United States Senate.
NHPCO's Advocacy Planning Toolkit
This site gives an overview of what is needed for effective advocacy at the grassroots level. Topics include "The Advocacy Plan", "Civics 101" and "Organizational Assessment".
This site is password-protected with access for NHPCO members only. For membership options, visit NHPCO's International eAffiliate Membership page.
Palliative care and public policy
Integrating palliative care into national policies
By Jan Stjernswärd, Kathy Foley and Frank Ferris, Journal of Pain and Symptom Management, 2007, 33, 514-520.
Good policies lay the groundwork for an effective health care system and society. They facilitate the implementation of palliative care programs aimed at providing care for all people in need of these services, and they ensure equitable access to affordable medications and therapies. The lack of good policies can lead to unnecessary suffering and costs for patients, families, and society. Three-quarters of cancer patients worldwide are incurable when diagnosed. Because the size of the problem — and the suffering associated with cancer — is enormous, development of a national cancer control policy is an effective point of entry to begin integrating palliative care into a country's health care system. To be comprehensive, every cancer center must include palliative care. Ideally, palliative care is incorporated as a priority within all aspects of each country's national health plan, so that all patients living with or dying from any chronic disease may have their suffering relieved, including children and the elderly. To this end, policies that address essential medicines must include a list of palliative care medications. Supplies of affordable, generic medications that are "equally efficient" must be adequate and available throughout the country wherever patients live (especially opioids for pain control).
Palliative care: the public health strategy
By Jan Stjernswärd, Kathy Foley and Frank Ferris, Journal of Pain and Symptom Management, 2007, 33, 486-493.
There is the knowledge to improve the quality of life, dying and death of cancer sufferers, other patients dying of chronic diseases, HIV/AIDS and the children and elderly terminally ill and their caring family members, an estimated 100 million people globally, if palliative care and pain relief would be available. Tragically however, palliative care is only reaching a lucky few. Two third of those in need of palliative care are in the low or middle income countries. The World Health Organization (WHO) has pioneered a public health strategy to integrate palliative care into existing healthcare systems, as this offers the best approach for translating new knowledge and skills into evidence-based, cost-effective interventions that can reach everyone in the population, when incorporated by governments into all levels of their healthcare systems and owned by the community. The WHO Strategy starts by establishing four foundation measures, key components that are: 1) appropriate policies, 2) adequate drug availability, 3) education of the public, policymakers and the public and 4) implementation. The WHO Model has shown that it provides an effective strategy for countries to establish palliative care. The Open Society Institute has actively supported countries to establish National Palliative Care Programs according to these principles. Combined with a community strategy that involves the society through collective and social action, "Palliative Care for All" indeed could become a reality.
Palliative care: a public health priority in developing countries
By Ruth Webster, Judith Lacey and Susan Quine, Journal of Public Health Policy, 2007, 28, 28-39.
Palliative care is an emerging specialist discipline worldwide with the majority of services located in developed countries. Developing countries, however, have higher incidences of cancer and AIDS and most of these patients would benefit from palliative care. While there is prominent coverage of this issue in the palliative care literature, there is limited coverage in the specialist public health literature, which suggests that the challenges of palliative care may not yet have been generally recognized as a public health priority, particularly in developing countries. The aim of this article is to introduce the topic of "Palliative care in developing countries" into the specialist public health literature to raise awareness and stimulate debate on this issue among public health professionals and health policy makers, thereby potentially facilitating establishment of palliative care services in developing countries.
With this publication, Help the Hospices provides an overview of the widespread lack of access to analgesia around the world, based on results of a global survey of palliative care workers. The results portray a serious situation of unrelieved pain and suffering across the globe, although per-capita opioid consumption statistics suggest that the problem may be even worse than palliative care workers indicate.
For further information on public policy/advocacy please also see Further development, Forming departments.