Many of us will remember hearing about the NHS doctors and nurses who risked their lives to fight Ebola in West Africa. Pauline Cafferkey, who caught Ebola and is still fighting the after-effects. Nurse Will Pooley, who survived Ebola and went back to Sierra Leone to continue saving lives. But we didn’t hear about Mariatu Songo Kanu, a religious leader in Sierra Leone’s Port Loko District who talked to “heartbroken” people trapped in their homes, under quarantine. We didn’t hear about Paramount Chief Adekalie Miller II, who enforced strict bye-laws forbidding unsafe burials. We didn’t hear about the women’s groups who went round their local communities, sharing advice and soap with other mothers.

These are just three grassroots actions highlighted in a new report commissioned by the Africa All-Party Parliamentary Group (AAPPG) entitled Ebola: An Epidemic Of Mistrust: Lessons from Affected Communities in Preparedness for Future Health Crises. While noting the UK’s crucial role – providing Sierra Leone with £427m worth of medical, technical and logistical support – it also highlights the massive efforts of local people in Sierra Leone, Liberia and Guinea – from the estimated 39,000+ frontline health workers, to community mobilisers, volunteers and contact tracers, who used their local knowhow to track down and monitor those who may have come into contact with an infectious Ebola patient.

Most organisations who were involved in the crisis now acknowledge that this community-level involvement is what changed the game. “Once people were fully involved, understood what they had to do to remain safe and were helped to do the things that they knew would work, the tide began to turn against Ebola,” noted Sue Turrell, Head of Oxfam’s Ebola response.

Some initiatives were organised by international and national bodies, others sprang up organically from the grassroots.  Such as the Kick Ebola Out programme, set up by members of the Sierra Leone and Guinea Medical Students Associations. “We wanted to make a difference,” explains Dr Asad Naveed, who at the time of the outbreak was president of the Sierra Leone Medical Students Association. “We wanted to prove that Sierra Leoneans can do it.  It shouldn’t always be external people spoonfeeding us. Pro-activeness, critical thinking and brainstorming can bring out solutions. Unless we take things in our own hands, we will continue to remain dependent on foreign help and aid.”

And they were not alone. Many local organisations were doing creative things at that time, remembers Dr Naveed: “This included some people preparing infection prevention kits for the home management of infected persons until an ambulance arrived. Others were providing food for people in quarantined homes…” However, he adds, lack of funding meant their work could not be as widespread as that of bigger NGOs: “Grassroot movements required strong creativity and hard work to be successful.”

So why not leave the work to the international organisations and NGOs with their many resources and expertise in managing crisis situations? Because that alone doesn’t work, found the report’s researchers: “Panellists [community leaders, NGOs etc who were interviewed or submitted responses] who had worked in the Ebola-affected communities stressed repeatedly that the response was being hindered by fear and a lack of trust between national actors, international actors and affected communities.”

“At the beginning of the outbreak, there was a lot of mixed messaging going on about the cause of Ebola and how it was spread,” explains Samara Linton, a member of student-run global health thinktank Polygeia, who co-edited the AAPPG report. “For example, the World Health Organization originally said the virus was being spread through bush meat, and then later it was discovered that wasn’t the only form [of transmission]… So when people realised that they were eating bush meat and not being infected, it reduced the legitimacy of that message.”

The report cites other examples of approaches that lacked local sensibility. Broadcasting Ebola-prevention messages on government-run radio stations in countries where a lot of people don’t trust those in power, for example, won’t calm rumours. Telling people not to trust traditional healers in villages where they are highly respected will not work. Nor will driving around town shouting instructions from a megaphone, as officials did in Lofa county, Liberia.

The UK’s initial response to the Ebola outbreak, notes the AAPPG report, has been criticised as authoritarian: “Many UK actors in the crisis were not educated about traditional beliefs and practices and so were unable to work with communities, rather than against them. During the crisis some traditional beliefs involved practices such as mourning by holding the dead body of a relative and washing and dressing it in preparation for burial, which allowed the disease to spread. However, in the rush to save lives foreign aid workers frequently ignored these aspects and some even tried (largely unsuccessfully) to tell Sierra Leoneans that they must ‘put aside tradition, culture and whatever family rites they have’.”

Changing attitudes and behaviour was only made when international and national agencies worked with (not against) respected or influential local players, be they religious leaders, traditional healers, chiefs or media outlets. The report ‘Keeping the Faith: The Role of Faith Leaders in the Ebola Response’ highlights how religious leaders helped fight stigmatisation of Ebola survivors, preached about the need to conduct safe burials (and showed how this could be reconciled with one’s faith), and engaged their followers.

“Lofa County had been a hot-bed of Ebola-denial and it was difficult to get health staff in to assist,” a senior UN staff member in Liberia is quoted in the report. “The Imam and the local chief worked together using messages from the Quran and the Bible to discuss behaviour change with the communities. This paved the way for health staff to get access to the County.”

The same was true for traditional healers, who were initially seen as an obstacle by some Ebola response teams. “If you go in with the attitude that all traditional practices are damaging to health, it can be really counter-productive,” says Ms Linton. “You’re actually throwing away a lot of the good that traditional healers do, and a lot of the benefits – because they are really trusted and often have great working relationships with leaders in the community and the most vulnerable people in the community and that’s something we don’t want to lose.”

Another undervalued resource during the outbreak was the input of diaspora communities. “Sierra Leonean diaspora groups had a huge role in mobilising volunteers from the UK to go to Sierra Leone,” agrees Ms Linton. “A lot of them have been on the ground providing practical support but also working with communities … We don’t always need to send anthropologists out there to spend years learning the culture or the language, they bridge that gap for us. We have a great resource in the UK diaspora, who are already invested in Sierra Leone, in Liberia, who want to be involved.”

As well as continuing to send vital remittances, diaspora groups organised volunteers to go out to the affected countries and gathered vital resources. The Sierra Leone War Trust (SLWT), for example, worked with local grassroots organisations to provide raincoats to 750 commercial motorbike riders, as well as Personal Protective Equipment (PPE) and hand-washing facilities.

Building these networks and connections before and even during crises is vital to success, but just as important is ensuring local health systems are up to the job found the report: “The key lesson in ensuring preparedness for future health crises is that health systems should be developed horizontally, local ownership should be prioritised and investment made at community level. Such approaches foster trust and create demand for health services.”

To see the difference that installing effective health structures makes, you only need to look at the countries that have dealt effectively with Ebola. Uganda has seen Ebola flare up several times over the years, but now each time a case is diagnosed procedures are already in place – from a testing lab at the Uganda Virus Research Institute to a mobile phone reporting system for health workers. During the last outbreak in Luwero, central Uganda, in 2012 there were just seven cases and four deaths.

The Ebola outbreak in West Africa was a horrific episode that like the civil wars in Liberia and Sierra Leone, and Guinea’s long years under dictatorship, will linger long in the memory – and continue to have repercussions for years to come. But by putting the resources, decisions and tools in the hands of the people – rather than flying in international aid when a public-health emergency is declared – community engagement is easier, the response is quicker and the experts are already on the ground.

The report “Lessons from Ebola Affected Communities: Being prepared for future health crises” was written by Polygeia and commissioned by the Africa APPG with fieldwork funding from the Royal African Society.

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