A new report launched today titled “UK TB Voices: The Story Behind the Statistics” depicting the personal stories of individuals affected by TB in the UK, calls on the UK Government to form a national strategy for TB and highlights the need for a coordinated international response to the disease.

Screen Shot 2013-10-23 at 10.04.19

The report, published by RESULTS UK, TB Alert, TB Action Group and the All Party Parliamentary Group on Global TB explores TB in the UK through the first-person accounts of five ex-TB patients and one of the UK’s leading clinicians. The sometimes shocking accounts offer unique insight into the terrible impact of TB in the UK, the harshness of anti-TB drugs and their associated side-effects and the challenges of keeping patients on treatment. In the report’s foreword, Dame Sally Davies, the Chief Medical Officer, highlighted the: “compelling case for the long-term and sustained action needed to improve prevention, detection and diagnosis of cases and ensure treatment completion.”

The UK has some of the highest rates of TB in Western Europe and rates have been steadily increasing since the late 1980s. Nearly 9,000 people in the UK are diagnosed with TB every year. The report highlights the crushing impact of the disease on those who suffer from it. One of the patients interviewed for the report, Natalie, described the extended delay she experienced before receiving an accurate diagnosis: “I was in pain for six years before they diagnosed me with TB.” The treatment for TB can be long and arduous, which was the case for Natalie: “The side-effects hit me hard and I was completely unprepared for them. I was vomiting a lot. I developed rashes all over my body. In total, I took over 2,500 pills in six months.”

Screen Shot 2013-10-23 at 10.02.32

The report offers a number of policy recommendations and calls on the UK Government to introduce a National Strategy on TB that will drive a patient-centred approach to TB treatment and ensure an appropriate balance of clinical and social care for the disease.

A National Strategy is currently being formulated by a group of key health officials and it must be completed, fully funded, and part of a wider government strategy on TB. John McConnell, Editor of The Lancet Infectious Diseases journal, explained why it is so important: “A National Strategy for TB is urgently needed in the UK, one that reflects the challenges of reaching target groups such as immigrants, vulnerable and disadvantaged populations. Without this we will soon have more new cases of TB every year in the UK than the whole of the USA.”

The report makes several other key recommendations, notably the need to introduce a mechanism to ensure coordination across the UK Government’s TB interventions and the importance of tackling the disease internationally, stating: “The only certain way to eliminate TB as a public health threat in the UK is to drastically reduce the number of cases worldwide. This requires financing, but also global leadership…The 8.6 million people around the world who contract TB every year need the UK Government to take the lead in addressing the TB epidemic.”

Mike Mandelbaum, Chief Executive of TB Alert, the UK’s national tuberculosis charity, said: ““TB Alert hopes this timely report will help shape national and local policy and practice on TB. TB Alert has long recognised the importance of the patient voice, as it is only through hearing the stories of people who have experienced the disease first hand that we can learn how to best improve access to, and the delivery of, treatment and care. Then we can ensure that TB services really meet the needs of all people affected by TB.”

Aaron Oxley, Executive Director of RESULTS UK, the lead authors on the report said: “All too often the voices of people who live with this disease are not heard, or ignored, as people don’t realise what a big issue TB is. The people speaking out in this report are just a few of the millions who are affected by TB every year. We hope their voices will inspire people who’ve been affected by TB all around the world, not just in the UK, to call for a renewed effort to finally eliminate the deadliest pandemic in human history.”

Andrew George MP, co-chair of the All Party Parliamentary Group on Global TB, said: “The stories found in this report are examples of remarkable courage and determination, but they are also examples of the daily reality of fighting the disease, played out a million times every day across the planet. It is the daily reality for too many people, and that’s why my colleagues and I in the Westminster parliament are determined to keep up the pressure for positive change.”

The full report is available at /sites/default/files/wp-content/uploads/2013/10/UK-TB-Voices-Final.pdf 

For interviews and information contact:

Claire Hoffman [email protected] +44 208 892 5215 / +44 7977 440 353 or Cathy Bartley [email protected]  +44 208 694 9238 / +44 7858 561561

Editors Notes:

  • RESULTS UK is a UK charity that aims to generate the public and political will to end hunger and poverty by focusing education, microfinance and global health issues, including TB. RESULTS UK works to change policy and mobilise resources to TB and to improve equitable access to health services. For more information visit results.org.uk
  • TB Alert is a UK charity that works to raise awareness of TB among health professionals, helps prevent delays in TB diagnosis and aids treatment completion providing practical and emotional support to patients. By talking about the illness and empowering people affected by TB to share their stories, TB Alert’s work challenges stigma and overcomes misconceptions. For more information visit www.tbalert.org
  • TB Action Group (TBAG) is a network for people affected by TB in the UK that provides support for people during their treatment and recovery from TB, raises awareness of TB and advocates for improved TB services. For more information visit www.tbactiongroup.ning.com
  • The All-Party Parliamentary Group on Global Tuberculosis was established in 2006 and is chaired by Andrew George MP.  The overall purpose of the APPG is to raise the profile of the global TB epidemic (which includes the growing incidence of TB in the UK) and to help accelerate efforts to meet international TB control targets. For more information visit www.appg-tb.org.uk.