Tuberculosis - RNOH/GIRFT review: national report

2 Executive Summary

Tuberculosis (TB) continues to be the major infectious disease accounting for loss of life worldwide. Although the number of notifications (a diagnosed case of TB reported to the relevant health authorities) has fallen over previous decades, TB in the UK continues to be a major burden and the WHO (World Health Organisation) eradication target is unlikely to be met by 2035. For a variety of reasons, there has more recently been a year-on-year increase in the number of post pandemic notifications, leading to the Scottish Government commissioning the GIRFT Projects Team at the Royal National Orthopaedic Hospital (RNOH/GIRFT) to deliver this review of TB, with the aim of identifying improvements to sustain care for patients with TB and highlight any good practice.

This report is very timely with the increase of 40.8 % in notifications between 2022 and 2023, an increase not seen since 2017. While Scotland remains a low incidence country at 5.2 cases per 100,000 population the increase in case numbers is very concerning, especially in the 25 to 34-year-old populations, where there is a rate of 13.5 notifications per 100,000, and increasing numbers of cases in children, consistent with recent TB transmission. Overall, there was a death rate due to tuberculosis of 4% in 2023, which, while similar to that in England, is still unacceptably high.

This report sets out how RNOH/GIRFT delivered against the objectives of the review, which used the GIRFT methodology of data-driven peer reviews of services. Although the methodology is similar to that used for the review of TB Services that RNOH/GIRFT undertook in England in 2024, the process was different, allowing a greater number of services to be reviewed. Furthermore, the report is constructed in a different way to the England report, with the themes based around the data pack chapters. As such, the recommendations are based upon the findings from the visits and the data and are thus bespoke to Scotland. As expected, there are some findings and recommendations that are common to both reports, but there are also differences.

While the geography and models of care in Scotland are different, it would be worth colleagues in Scotland reviewing the recommendations in the NHS England report on suggested staffing levels, especially if a preventative program is to be developed.

The aim of this RNOH/GIRFT TB review was to instigate a step change in care, reducing the burden of TB on patients, their carers, on providers of TB services and on the local and national health systems. Whether we can redress the trajectory of elimination is unknown, but completing these recommendations will be a significant and positive step towards that goal.

Following the GIRFT methodology, a comprehensive data set was developed based upon the Scottish Morbidity Records Inpatient Dataset (SMR01) activity returns, the Enhanced Surveillance of Mycobacterial Infections (ESMI) dataset and an in-depth survey. The latter was based on the England survey developed by a ‘Delphi’ type process with several iterations. This formed the template for engagement with colleagues in Scotland, after which the survey was improved and increased in size. There was an excellent response from colleagues as shown in Annex A, which lists those who completed the survey.

This resulted in the development of a bespoke data pack for each participating provider where the provider was anonymously benchmarked against their peers. This data pack then formed the basis of the ‘deep dive’ meetings with selected health boards, lasting 2 to 4 hours, at which the TB services were explored in detail. From these deep dives, both good practice and service issues were identified to form the basis of this report. To facilitate service development for each participant, a report was produced after each deep dive meeting, which included specific recommendations for that service provider.

To make the data pack easier to follow, some 102 ‘core graphs’ were selected and used as a focus for the deep dive meeting. The full data pack included these core graphs and was shared with the identified TB coordinator for the service, who then shared this pack with relevant colleagues. They also ensured that colleagues such as clinicians, TB nurses, Executive and Management leads and the TB Service Public Health representatives were invited to attend the deep dive meeting.

This report has been constructed using the information from the data sources listed and the deep dive visits. The narrative of each section is supported by a selection of graphs from the data pack which, for ease, are embedded within the report. The latter graphs usually show the Scotland average and the findings from several anonymised providers. This allows us to benchmark services as well as showing variation, some of which (from the visits) appear to be unwarranted.

The report contains 65 recommendations, many of which are relatively straightforward, in that they require a focus on providers to modify and standardise their services, supported by appropriate resources. Some recommendations propose action at national level.

The report recognises that financial resources are limited at present; however, many of these changes can be implemented with little additional funding and are likely to improve outcomes for patients, their carers, those individuals on preventative programs and, importantly, reduce the clinical and financial burden of TB in Scotland.