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Written on 4th May 2023 by Richard Money-Kyrle

The latest Official Statistics report on tuberculosis (TB) in England has found no reduction in the number of people whose treatment for TB starts more than four months after the onset of symptoms. In addition to delays leading to the start of treatment, the report also highlights ongoing concerns about the number of people with TB who have not completed a course of treatment within 12 months.

The national quarterly report compares data on people whose TB disease has been notified to the National TB Surveillance System (NTBS) in England because they have a culture-confirmed TB diagnosis or have started treatment for TB based on their clinical presentation. UK healthcare practitioners are required to report TB cases within 3 working days of making a suspected or confirmed TB diagnosis. The quarterly report covers people with TB who live or are treated in England, including those who are homeless. As trends in TB notifications tend to be seasonal, the report compares the first quarter (January to March) of 2023 with the same three months in 2022.

The latest findings suggest that England is unlikely to meet annual targets set by the joint UK Health Security Agency (UKHSA) and NHS England 'TB Action Plan’, and the World Health Organisation’s (WHO) ‘End TB Strategy’ to reduce by 90% the number of people with TB by 2035. The lack of progress suggests that action is urgently needed to improve awareness, timely diagnosis and treatment of this life-threatening but curable disease.

What is TB?

TB or tuberculosis is a serious, contagious disease that is caused by a bacterial infection. Pulmonary TB affects the lungs but the less common non-pulmonary form of TB can affect other areas of the body, such as the brain , spine, bones or abdomen. People can have both forms of the condition at the same time or have TB in multiple areas of the body.

TB spreads when someone breathes in TB-infected droplets of air after someone with active TB disease coughs, sneezes or spits. TB cannot be transmitted or spread by people with latent TB, who are infected but do not yet have symptoms. A small proportion of people with latent TB infection go on to develop active TB disease.

Tuberculosis is curable but can be fatal if treatment is delayed, or can lead to permanent lung damage, brain injury from TB meningitis and significant long term disability.

Who is at risk of TB?

Tuberculosis (TB) can infect people of all ages. The risks are increased for people who:

  • live in the same house or spend a lot of time with someone who has active TB;
  • come from somewhere where TB is more common;
  • are under five years of age;
  • are homeless or live in overcrowded or unhealthy conditions;
  • regularly smoke, drink alcohol or take drugs;
  • had poor treatment of TB in the past.

Health conditions which increase the risk of TB infection or serious illness from tuberculosis include:

  • conditions which weaken the immune system, such as:
    • HIV increases the risk of TB disease by 16 times;
    • diabetes;
    • kidney transplant;
    • treatment such as chemotherapy;
  • malnutrition.

Symptoms of active TB can be mild at first, with the risk that the infected person may not be aware that they are spreading the infection. The NHS advises that people should see their GP if:

  • they have spent a lot of time or live with someone who has active TB with symptoms;
  • they have had a cough for more than three weeks (seek urgent medical help if coughing up blood or blood-stained mucus);
  • are tired or exhausted but don’t know why;
  • they have a fever (high temperature) or night sweats which don’t go away;
  • they often don’t feel hungry or are losing weight without changes to their diet or exercise routine.

NHS advises to call 999 or go to A&E if symptoms suggest TB meningitis, such as neck stiffness and severe headache, photophobia (being unable to look at bright light), fits, weakness or loss of movement in part of the body, or sudden confusion.

Diagnostic tests for active TB, where the infected person has symptoms, include imaging, such as x-rays, ultrasound, echocardiograms or CT scans, or taking samples of mucus or biopsies of the affected area.  People who are at risk of TB but do not yet have symptoms may undergo blood tests or a Mantoux skin test.

Tuberculosis is usually treated with antibiotics, which in most cases must be taken daily for at least 6 months. If the full course of antibiotics is not completed it can lead to the patient remaining infected but also developing resistance to the antibiotic medication.  If the TB infection does not respond to standard antibiotics, the drug-resistant TB will need treatment with stronger drugs. Steroid treatment may also be needed if the tuberculosis has spread to the brain, spinal cord or area surrounding the heart.

With timely, appropriate treatment, TB can be cured. Delays in treatment can lead to severe, life-changing respiratory and neurological disability. Failure to treat active TB can result in the infected person’s death.

How common is TB?

The World Health Organisation (WHO) says that, worldwide, TB is the second leading infectious killer (after covid-19) and the 13th overall leading cause of death. In 2021 a total of 1.6 million people worldwide died from TB and around 10.6 million became ill with the disease, of whom 6 million were men, 3.4 million were women and 1.2 million were children.

Around a quarter of the global population is believed to be infected with TB bacteria, of which 5 - 10% will develop active TB. Multidrug resistant TB is a global health security threat, but only 1 in 3 people with drug-resistant TB were treated in 2021.

England has an annual TB notification rate of 7.8 per 100,000 people. 4,425 people were notified with TB in 2021. England is classed as a low incidence TB country but, without significant improvement in the prevention and treatment of TB, will probably not meet WHO’s End TB Strategy target of 90% reduction in people with TB by 2035.

In 2021, non-white ethnic groups had the highest TB notification rates in England, with black ethnicity highest for TB in UK-born people, and Indian ethnicity highest for TB in non-UK-born people. TB disease was strongly associated with living in large urban areas and with social deprivation. Over 20% of people with TB had at least one additional health condition (co-morbidity), the most prevalent being diabetes (11.9%). 

The latest report shows that 1,069 people were notified with TB in England in the first three months of 2023, compared with 1,060 during the first quarter of 2022.  More than half of these (53.6%) had pulmonary TB.

There has been no significant change in the number, demographic and clinical (health) characteristics of people reported to have TB between 2021 and 2022, or between the first quarters of 2022 and 2023. Nearly 76% of TB notifications related to people who had been born outside the UK. 16% of people with TB aged 15 years and over had at least one social risk factor, such as misuse of alcohol or drugs, or mental health needs, homelessness, or imprisonment.

The number of people notified with drug-resistant TB has increased but fewer than the minimum target 80% of those notified were confirmed by microbiological culture testing, which is necessary to provide effective, targeted treatment and help reduce transmission.

Delays in diagnosis and treatment

The latest Official Statistics report on TB in England for the first quarter of 2023 highlighted the lack of progress in reducing delays in treatment for patients with pulmonary TB. For these purposes, treatment delay refers to the time lapse between the onset or start of symptoms to the start of medical treatment, including the time taken for the patient to obtain medical advice, any delays in diagnosis and delays in starting treatment.

The TB Action Plan requires the NHS to meet a target of a 5% reduction each year in the proportion of people with a TB treatment delay of four months or more.  In the first three months of 2023, over 30% of people with pulmonary TB did not start treatment within four months of the onset of their symptoms.  In addition, only 70% of people with TB whose condition was sensitive (responsive) to medication, had completed their treatment within 12 months of the onset of their symptoms.

TB is a preventable, treatable and curable condition, which can lead to death or devastating disability if treatment is delayed. Where someone dies or suffers severe injury or life-changing disability as a result of negligent delays in diagnosis or treatment, the injured person or their bereaved dependent family may be entitled to compensation.

If you or someone in your family have suffered serious injury as a result of medical negligence, or have been contacted by HSIB/HSSIB, CQC or NHS Resolution, you can talk to an experienced solicitor, free and confidentially, for advice on how to respond or make a claim by contacting us.