TB Action:

Shaping the future of TB care

TB Action, formerly the TB Action Group, is a UK-based community of TB patient/carer advocates supported by TB Alert.

Our mission is to provide a platform for individuals affected by TB to share their experiences and insights, driving the civil society response to TB in the UK.

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Understanding the TB experience

TB can have a profound physical and emotional impact, often leading to feelings of isolation and stigma, compounded by a lack of adequate support.

Many people are successfully treated, but complex cases or delayed diagnoses can result in long-term consequences. The emotional and psychological toll is significant, often alongside challenges like housing insecurity or uncertain immigration status, which add to the burden of illness.

Despite efforts to raise awareness, public understanding of TB remains low. This can foster isolation, stigma, and shame, hindering people from seeking help and feeling supported.

A crucial issue is that the social support needs of patients are not always integrated into the design and delivery of TB services.

Anja:

Support through a gruelling marathon:

I’ve had my ups and downs with it; I infected a lot of my loved ones and unfortunately my mother also fell ill with TB. Side effects have been a challenge but I’m getting back to myself now…

I was very low for quite some time but I really can look back and see the improvement, so I hope that if someone were in that same place I was I might be able to share a bit of hope that things can improve.

Anja

read Anja’s story:
support through a gruelling marathon

Our core focus

At TB Action, we believe that lived experience must be central to the design and delivery of research and services.

We focus on three key areas:

Peer support

We offer one-to-one support and create a safe, welcoming space in our meetings where people can speak freely about their experiences without fear of judgment, stigma, or discrimination.

Peer support is essential for improving care and tackling stigma.

Advocacy

We advocate for policy change, pushing for better access to high-quality support, care, and essential tools like new diagnostics, vaccines, and drugs. We collaborate with partners such as the All-Party Parliamentary Group on Global TB and work closely with local NHS services, public health teams, local authorities, and third-sector organisations to shape and monitor TB service delivery.

Advocacy is vital for improving care and tackling stigma.

Raising Awareness

We work to raise public awareness by engaging with the media, TB affected people and communities and the professionals that work with them.

Our impact and achievements

As an initiative of TB Alert, TB Action has a national reach and is uniquely positioned to build trust with affected communities and create a truly representative network. Everything we do prioritises the needs and voices of people affected by TB.

We are committed to growing our network of advocates through recruitment, skills training, and development opportunities. We recognise that people affected by TB often face barriers to involvement, such as stigma, ongoing health issues, language barriers, or feeling their voice doesn’t matter.

We strive to create an inclusive environment, making it easy for people to get involved through flexible opportunities, peer support, and recognising contributions.

Your voice matters

Sharing stories helps healthcare professionals and policymakers understand what works and what doesn't, shaping more person-centred and responsive services, and allowing individuals to make something meaningful from difficult experiences.

We promote a social model of health, which considers wider social and structural factors influencing health beyond clinical care.

We have successfully raised the profile of TB and the patient voice in the UK. TB Action has evolved into a recognised and independent network, often serving as the first point of contact for decision-makers and stakeholders seeking patient insight. We have expanded our policy and parliamentary work in the UK and amplified the voice of people affected by TB at a European level.

We are witnessing a cultural shift where people affected by TB are seen as equal and strategic partners in the effort to end TB.

Get in touch

Would you like to find out more about TB Action, get TB information or peer support, or discuss how you can engage people affected by TB in your work?

Email: [email protected]

Phone: 0330 102 2403

Online community: https://healthunlocked.com/tb-alert

Examples of our work

Policy development and research:

TB Action members have directly codesigned Queen Mary University of London TB Centre service innovations, including shaping evaluation plans.

We were also selected by NICE to help develop national public recommendations on TB treatment and diagnosis, particularly for ‘underserved populations’.

Advocacy:

We were invited by the All-Party Parliamentary Group on Global TB to give oral evidence at a parliamentary inquiry into the threat of drug-resistant TB in the UK.

Our members have addressed the European Parliament as keynote speakers on vaccine development.

Media and awareness:

TB Action played an integral role in TB Alert’s The Truth About TB campaign, delivering and co-facilitating training workshops for voluntary, community and social enterprise sector (VCSE) organisations.

Our members’ stories inspired and educated these organisations on supporting people affected by TB in their communities. We have been featured in documentaries like Rockhopper TV’s on Gene Xpert and BBC World’s “Kill or Cure: TB Vaccine,” and interviewed on BBC Radio 4’s “You and Yours” about BCG policy.

The UK’s national tuberculosis (TB) charity