Take a flight of stone steps to the third floor of a narrow building in downtown Freetown and you’ll arrive at a small room with billowing purple curtains, where a group of men and women are chatting over the background noise of television news.

The peaceful atmosphere belies the suffering that has brought them together. Each of them has survived Ebola, which means they bear a double burden of social stigma coupled with painful side-effects. For those who lost loved ones in the epidemic, grief is laced with survivors’ guilt.

The headquarters of the Sierra Leonean Association of Ebola Survivors (Slaes) provides a safe space for those who withstood the disease to relax and spend time together, as well as hold meetings and conferences.

“I started coming … because being together helps heal our trauma. We’ve shared the same experience so their pain is my pain,” says Beatrice Quee, the group’s financial secretary.

Ebola took her husband and two sons, so she no longer has any immediate family to whom she can turn for support. She knows how it feels to be ostracised from her community and suffers daily from joint pains, the most common after-effect of Ebola.

Many other people in the room suffer in very similar ways and are able to swap stories and express empathy.

But the association, set up by survivors for fellow survivors, does more than just provide comfort to those who’ve lived through Ebola, which tore through Sierra Leone, Guinea and Liberia from December 2013, claiming more than 11,300 lives– including about 4,000 in Sierra Leone – and devastating some of the world’s most fragile economies. Its members also work to put pressure on the government to deliver on the promises it made at the end of the outbreak.

When Sierra Leone was first declared Ebola-free in November last year, President Ernest Bai Koroma addressed the nation, saying: “We remain committed to ongoing work to support survivors. This includes a comprehensive package of support for survivors, including free healthcare and psychosocial support.” 

Many survivors feel he has not delivered. Earlier this month they protested outside parliament, accusing the government of not providing free healthcare as promised.

“We have not yet received free medicine, and we don’t want to be forgotten,” says Santigi Bangura, education secretary for Slaes.

“I’ve seen the way that the government forgets those who have suffered, like the people who had their limbs cut off in the [1990s] civil war. We won’t go quiet. We formed this association because we know that together we are stronger and more likely to be heard.” 

After the protest, the government said the health ministry had directed all district medical officers to ensure they provide free healthcare for survivors, including specialised eye care to deal with uveitis, an inflammation of the eye’s middle layer that is a common repercussion of Ebola. The government also said medication used to treat post-Ebola complications had been added to the ministry’s essential drug list and procured.

Many survivors have tried to access free medicine by turning up at pharmacies with the necessary documents, such as their hospital discharge certificates. But many say they were redirected to other dispensaries and asked to pay.

Presidential spokesman Abdulai Bayraytay admitted the drugs were not always available.

“All survivors are entitled to free healthcare and medicines if they are available. If they’re not available they might be sent elsewhere – most of the survivors need specialised drugs and the minister of health has ordered them in,” he said.

“We take the survivors very seriously. The president described them as heroes, but as Ebola is a new epidemic so it challenged us as a government.”

Beatrice remembers the fear and pain she felt when she couldn’t get the help she needed.

“I was scared. I was dizzy, aching and weak and I had seen so many people die. I know that some can die after the disease ends, so I went to the pharmacy with my form, but they sent me away – they told me to go to a private place.”

Beatrice’s medicines cost 300,000 Leones (£53) which, in a nation where the minimum wage is less than £3 a day, was not an easy sum to raise. She had to persuade friends to lend her the money.

When asked if she thinks the government will eventually deliver on their promise of free healthcare, she shakes her head. “What they say today, they change tomorrow.”

After the government promised the comprehensive package for Ebola survivors, they turned to charitable agencies to help them provide and implement it, including the World Health Organisation, Unicef, and Médecins Sans Frontières.

Mauricio Calteron, the head of care and support for Ebola survivors at the WHO, works with the Sierra Leonean government, and says there are some gaps in the response effort.

“Healthcare should be free to survivors and we are working to correct that,” he said, acknowledging that many pharmacies are inadequately stocked, forcing survivors to go elsewhere and pay.

Part of the problem, he said, is lack of experience and knowledge surrounding the health complications that follow Ebola, and how long these after-effects can last.

Calteron fears new problems may continue to emerge, making it difficult to provide the required medicines.

“We’ve found that these things don’t go away after three months as, after a year and a half of convalescence, problems are still persisting.”

Santigi suffers from uveitis, which can lead to blindness if untreated, and is afraid of losing his sight. Partners in Health, a global health NGO, has secured free eye checkups and treatment for all registered survivors, so those suffering from uveitis can now get the necessary help for free.

Other complications can arise as a result of glandular failure. Calteron says acute meningitis has also been acknowledged as a likely side-effect of Ebola.

Relentless joint pain can have a disastrous effect on survivors’ livelihoods, especially those who do manual labour.

Sulman Jalloh is a cleaner in a government hospital in Freetown, where he contracted the disease in June 2014. He has returned to work but suffers from serious backache and cannot afford pain relief. “I don’t take medicine because I don’t have the money, but I hope that God can help me,” he says.