Today, 4 August is World Non-Tuberculous Mycobacteria (NTM) Awareness Day. A couple of years ago I had never heard of NTMs; fast forward to July 2024 and I was privileged to be at the UK NTM Network’s Standards of Care launch meeting. which LifeArc sponsored.
What are non-tuberculous mycobacteria (NTM)?
Non-tuberculous mycobacteria (NTM) are a group of naturally occurring bacteria found in soil, water and even dust. They belong to the same family of bacteria that cause tuberculosis (TB).
For most people, NTM infections are not problematic, but for some – particularly those with long-term lung conditions such as cystic fibrosis and bronchiectasis – they can cause pulmonary disease (PD).
The symptoms of NTM infections are cough (sometimes with phlegm and blood), fever, weight loss, fatigue, shortness of breath and night sweats. Many of these symptoms are similar to those of other lung conditions and infections, making diagnosis challenging.
Challenges for those living with NTM-PD
It can take many months or even years to get a diagnosis. But getting a diagnosis is just the start.
Then, decisions need to be made about whether to have antimicrobial treatment, which usually involves taking several drug for long periods with the risk of unpleasant side effects. Other non-pharmacological treatments such as physiotherapy and weight management are also important parts of managing NTM-PD.
It’s a real team effort between patients and health care professionals, and one that lasts a long time. Most people continue to be seen by NTM specialists for many years.
However, there hasn’t been a single consistent approach to managing care for people with NTM-PD, leading to patients reporting differences depending on where they live.
This is where outlining new standards of care comes in.
Why are the ‘Standards of Care’ important?
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.
The NTM Network UK has spent the last few years working on these new NTM Standards of Care.
These standards:
- describe the minimum level of care that people with NTM should expect to receive from the NHS
- outline patient-centred approaches to management
- are designed to help support a consistent, standardised and high-quality approach to care of people with NTM disease
- include measurable indicators of good practice that services can use to identify strengths and areas for improvement
NTM Network UK anticipate that the new Standards will support a more rapid diagnostic process than currently exists, and simplify the patient journey, and result in cost and resource savings.
Launching the Standards of Care
There was a lot of positive energy at the launch of the new Standards; 248 people attended, both in-person and online. It was hugely positive to see the multidisciplinary approach, always centred around people with lived experience.
The meeting began with a stark reminder of the difficulties associated with diagnosis, monitoring and treatment, as 2 patients described their personal experiences of NTM-PD. One patient recalled taken 3 medications daily for 18 months, 4 medications for a further 12 months and then 3 for a final 12 months. Another patient had to move across the world to be with family who could help care for her.
Both emphasised the importance of many different health professionals in their journeys including physicians, nurses, physiotherapists, pharmacists and dietitians all of whom have been involved in formulating the new Standards and were represented at the meeting.
The patient representatives hope the Standards will empower those diagnosed with NTM-PD to be proactive in their care and ensure the appropriate level is received irrespective of geographical location.
The meeting continued with other members of the Network describing the 6 sections of the Standards and the related quality statements, while reminding us of the unmet needs in diagnostics, therapeutics, care and research.
How we hope to help those with NTM-PD
In our work as part of the Chronic Respiratory Infection Translational Challenge, we’ve heard a lot about the problems with NTM-PD, including difficulties with culture for diagnosis and monitoring.
One of our current objectives is to develop a new diagnostic test that can be used to inform decision-making in NTM-PD care.
It was great to be at the launch of the Standards and meet people including healthcare professionals and people with lived experience. The launch of the Standards of Care felt like the start of something bigger for the NTM-PD community, which will ultimately lead to better health outcomes for those affected.
Congratulations to the NTM Network UK and all those involved.
About the author
Rachel Dakin
Clinical Development Manager • Integrated Diagnostics
