Who this guidance is for

This guidance is intended for registered medical practitioners (doctors) and other healthcare practitioners responsible for notifying patients with suspected or confirmed active tuberculosis (TB).

Background

All forms of suspected and confirmed active tuberculosis (TB) are statutorily notifiable. This is irrespective of the site of disease.

Statutory notification for active TB is made electronically through the National TB Surveillance System (NTBS) managed by the UK Health Security Agency (UKHSA) and accessible by TB Services.

Notification enables prompt investigation, risk assessment, and response to scenarios that present or could present a significant public health risk. Timely notification is essential to support the public health response and mitigate against further transmission of TB.

Notification also provides demographic and clinical data on all suspected and confirmed TB, allowing TB incidence to be monitored regionally and nationally. Furthermore, notifying through NTBS helps individual-level linkage with isolates from the reference laboratories’ data from whole genome sequencing. This enables prompt cluster identification and outbreak investigations.

Data from NTBS informs recommendations that support the implementation of England’s collaborative NHSE-UKHSA TB Action Plan, which sets out a programme of work that enables a year-on-year reduction in TB incidence and transmission in England. On a regional and local level, data from NTBS also allows the identification of notified individuals for cohort review.

When to notify

In accordance with the Health Protection (Notification) Regulations 2010, suspected or confirmed active TB should be notified within 3 working days of making or suspecting the diagnosis. In situations where urgent immediate public health action may be required, contact the local Health Protection Team (HPT) within 24 hours in line with locally agreed arrangements.

If you suspect TB in a healthcare worker, or you suspect TB that may be multi-drug resistant or relate to a cluster or suspected cluster, this should always be notified urgently. Any urgent verbal notification must be followed up with notification into the NTBS system within 3 working days.

Notification to NTBS should not be delayed if full details of the patient (including laboratory confirmation) are not available within this timeframe. In this scenario, you can provide minimal details including the name, date of birth, address, and details of the treating clinic and case manager; additional information can be entered into NTBS later. A patient can be subsequently de-notified if an alternative diagnosis or contamination is confirmed.

Who to notify

It is a requirement to notify NTBS of patients who meet any of the following criteria, there is:

• a patient in whom there is clinical suspicion of pulmonary or extrapulmonary TB even in the absence of culture confirmation, where the following apply:
  • the clinician has assessed the patient’s clinical or radiological signs or symptoms as compatible with TB
  • the clinician has decided to treat the patient with a full course of anti-TB therapy
• a patient who has culture confirmation due to Mycobacterium. tuberculosis complex, which includes M.tuberculosis, M. bovis, M. africanum, M.orygis, M.canetti, M.caprae and M. microti
• a patient who has biopsy, pathology, or post-mortem findings consistent with TB disease, including caseating or necrotizing granulomas in biopsy of lung, lymph nodes or other specimens
• reasonable ground to suspect that a patient has died with, but not necessarily from, active TB, including postmortem diagnoses made on laboratory testing or imaging. It is important to notify these patients to prevent the underestimation of deaths due to TB, to allow accurate monitoring of mortality rates over time, and to trigger a risk assessment of whether contact investigations is required – notification is still required even if the patient who died was not seen by the TB service
• any patient diagnosed with active TB but who did not start treatment

Please note that, as well as UK residents diagnosed in the UK, notification requirements apply to:

• UK residents who have been diagnosed abroad and are to continue with their anti-TB therapy in the UK
• non-UK residents diagnosed in the UK, even if anti-TB therapy is not initiated in the UK or they have since left the country
• temporary UK residents, for example, students, asylum seekers, or undocumented migrants
• individuals who have previously had confirmed or suspected TB – each instance of TB, if occurring more than 12 months since treatment completion or previous notification, should be notified to NTBS; NTBS allows multiple notifications to be linked together

There is no statutory requirement to notify the following scenarios in NTBS, where:

• disease caused by mycobacteria not belonging to the M. tuberculosis complex (MTBC), that is, patients with non-tuberculosis mycobacteria (NTM). If notified prior to knowing that the patient had an NTM and confirmed not to have MTBC, then this should be de-notified on NTBS
• diagnosed latent TB infection (LTBI) receiving preventative TB treatment, however, where a person with LTBI is a contact of someone with active TB, the number of contacts with LTBI and treatment outcomes should be added to the index case record
• disseminated disease resulting from Bacilli Calmette-Guérin (BCG) vaccination or intravesical BCG immunotherapy (the latter used in the treatment of superficial bladder cancer). BCG cases should instead be reported through the Yellow Card scheme

Roles and responsibilities

There is a legal requirement for NHS and private sector registered medical practitioners (RMPs) to notify where they have a patient that fits any of the criteria for notification above. TB Specialist Nurses should liaise with the appropriate RMP to ensure that notification is completed in a timely manner.

To avoid delayed notification, it is recommended that there is a local agreement in place for designated TB nurses or TB administrators to notify cases on behalf of RMPs. All TB notifications should be reported onto the NTBS system and not via eNOIDS online service.

Diagnostic laboratories that test samples are required to notify the UKHSA when they identify M. tuberculosis complex within 7 days – see the guide for laboratory reporting to UKHSA including information on when urgent (less than 24 hours) reporting may be required.  

It is also recommended that there is a pathway in place for microbiologists, pathologists and radiologists to inform the local TB team of positive results received from non-TB specialist teams to ensure notification occurs in a timely way.

New user registration and training

For new users’ registration and training please contact your Field Surveillance team via your local UKHSA HPT or email ntbs@ukhsa.gov.uk. For further information and FAQs on notifying using NTBS please see this link. NTBS Frequently-Asked Questions