As a young law student, Amy’s attention was focused on her studies. When she developed a dry, itchy cough and began to lose weight rapidly, she thought it was the stress of her degree. When a relative suggested TB, she felt sure the BCG vaccine she’d had as a child protected her from this ‘disease of the past’.

But it turned out Amy had TB, and the long delay in diagnosis ultimately led to her losing a lung.

Amy has experienced both sides of peer support, which our TB Action Group provides to people going through treatment. “When I was diagnosed with TB, I had to put my university studies on hold, and was feeling isolated and frustrated at the lack of support available. I wanted to talk to someone personally affected by the illness,” she says.

“I called TB Alert, and was put in touch with Anna. We spoke mainly over email and Facebook and then met up. I felt less alone knowing Anna was there and the fact that she’d completed her treatment and graduated from university gave me hope for the future.” Amy eventually finished treatment, graduated from university and is now at the Race Equality Foundation.

Last year, she provided peer support for Abid, a Pakistani migrant receiving follow-up care for TB at an immigration removal centre in Manchester. “I visited Abid three times, giving him moral support and reassurance. We talked about his care and treatment, and I also gave him more practical support by liaising with his solicitor.”

As well as providing peer support, Amy now acts as a patient advocate for TB Alert – helping to prevent others from suffering unnecessarily as she did.

As Murambinda’s TB Clerk, Emmanuel understands the devastating consequences of failing to complete treatment. When he noticed that Jonah, a patient under Murambindia’s care, had not been to his local clinic to collect his medication, Emmanuel decided to pay him a visit. It took a while for him to track down Jonah, who was a roving cattle herder.

Jonah explained why he had stopped taking his medicine: “Before I was diagnosed with TB I was very scared. I had chest pain, sleepless nights, shortness of breath, I was losing weight and had no appetite – I was thinking that I was about to die. When the hospital discharged me they told me to go to my local clinic each month to get my medication, but they never had any drugs.

“The clinic told me to go back to the hospital for my medication, but it is too far to walk – 24km each way – and I can’t afford the bus fare. The thing is, I feel fine now and I have to work to make some money. I don’t need to come back for tablets.”

Patient outreach work is invaluable to understand why patients, like Jonah, may stop taking treatment. This helps Murambinda tailor their TB programme to best support people to complete their treatment. As a result of speaking to Jonah, and patients like him, Murambinda now provides:

• health education, to help patients understand the importance of treatment completion
• financial support, to help patients meet the costs of transport and good nutrition
• TB medications to local clinics, to ensure clinics have the supplies to support patients through Directly Observed Treatment.

Emmanuel made sure that Jonah’s local clinic received regular stock of TB medication and that Jonah was provided with the financial support he needed to visit the clinic for regular treatment.

Staff from the Delhi DIVINE Project met Urmila, who owns a small shop in the Nathupura District of Delhi, while carrying out a survey to assess the local TB situation. Urmila helped them to get information about the area and introduced them to local members of the local community. This inspired Urmila to become a project volunteer and TB Alert India supported her to enrol for training under the national TB programme.

Since then, Urmila has made a huge contribution to efforts to tackle TB locally. She has organised 16 community meetings which have raised awareness of TB among local people. She has also provided TB medications and support through Directly Observed Treatment to 60 people throughout their recovery from TB.

TB patients who have been supported in this way find Urmila’s shop location and opening hours make it really convenient for them to get their treatment, and Urmila offers them support and encouragement to complete their full course of medication – they call her Urmila Didi (big sister).