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Standards of Care for people living with non-tuberculous mycobacterial (NTM) disease in the UK

The first NTM Network UK Standards of Care for people living with NTM disease were launched in Summer 2024. For any enquiries around the Standards, please contact the Network administrator on admin@ntmnetworkuk.com.
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NTM Network UK launches the Standards of Care for
people living with NTM disease

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​​NTM Network UK's Standards of Care for people living with NTM disease were officially launched on Tuesday, 9th July 2024 at the launch meeting in London.

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We thank everyone who contributed to the Standards and everyone who joined us for the launch. The final Standards of Care document is now ready to download at the button below.

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Standards of Care Educational Materials
We are very keen to work with the NTM clinical community to raise awareness of the Standards of Care, and to provide support with their implementation where it is needed. As a first step, we have produced some educational materials to explain what the Standards are and why they are relevant to all members of the teams caring for people with NTM.


 

NTM Standards of Care Educational Materials

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​​We have produced a series of short slide decks, specific to the individual functions within the multidisciplinary team, which we hope will be useful to present and share during relevant meetings.

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We have also produced an A4 overview handout designed to accompany the slides.

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Rationale behind the development of Standards of Care for people living with NTM disease
We at NTM Network UK have long recognised the presence of significant variations in care for people in the UK with NTM disease. This was highlighted by two recent Network studies, which identified a number of issues associated with this variation, including a lack of standardised healthcare pathways and limited patient-centred approaches to management.(1,2)
 
There is an urgent need for consistent, standardised, high-quality care to be provided to people with NTM disease in the UK, irrespective of where they are managed. Whilst we already have excellent NTM guidelines describing generally recommended courses of action in the management of NTM pulmonary disease (3,4), no guidelines for extrapulmonary NTM disease or Standards of Care for either condition currently exist. A Standard of Care is different to a guideline and can be described as follows:

  • A diagnostic and treatment process that a clinician should follow for a certain type of patient, illness, or clinical circumstance (5)

  • The level at which the average, prudent provider in a given community would practice (5)


To address this unmet need, NTM Network UK began work on the first Standards of Care for people living with NTM disease in the UK in early 2022 in partnership with healthcare professionals, people living with NTM, and professional associations.
 
The Standards cover six key themes that address the most important issues for the care of people living with NTM disease. They are derived from the best available evidence, and focus on aspects of care that are particularly relevant to the delivery of equitable, high-quality services.

They aim to provide a written guide to the minimum level of care that people living with NTM disease should expect to receive in the NHS. The Standards also contain measurable indicators of good practice that allow services to benchmark themselves and so identify areas of strength and also need. Ultimately, it is intended that implementation of these Standards will help people living with NTM disease to achieve their best possible health outcomes.

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  1. Malhotra AM, Bryant S, Kunst H, Haworth CS, Lipman M; NTM Network UK. Management of nontuberculous. Mycobacteria-pulmonary disease: Results from the first UK survey of clinical practice. J Infect. 2023;87:64–67

  2. Morrison L et al, on behalf of NTM Network UK. What guidelines say and what actually happens. A survey of UK physiotherapy practice in the management of non tuberculous mycobacterial pulmonary disease. Abstract presented at the British Thoracic Society Winter Meeting; 23rd to 25th November 2022; London, UK.

  3. Haworth CS, Banks J, Capstick T, et al. British Thoracic Society guidelines for the management of non-tuberculous mycobacterial pulmonary disease (NTM-PD).Thorax. 2017;72:ii1-ii64.

  4. Daley CL, Iaccarino JM, Lange C, et al. Treatment of nontuberculous mycobacterial pulmonary disease: an officialATS/ERS/ESCMID/IDSA clinical practice guideline. Eur Respir J. 2020;56:2000535.

  5. Medical definition of standard of care. Available from: https://www.medicinenet.com/standard_of_care/definition.htm.

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