Some of our readers may not be that familiar with NTM, so please can you provide a little background.
NTM are a group of environmental mycobacteria that are not generally problematic for healthy people. They are usually found in water or soil, and although people can carry these bacteria in their lungs and be symptom-free, they can cause significant disease and require treatment, particularly when someone has an underlying long-term respiratory condition such as bronchiectasis or COPD.
Treating NTM is not straightforward. The medication, which can cause a lot of side effects, needs to be taken for months and months, and is not always fully-effective. People with NTM are often older and on other medication with which the anti-NTM drugs can interact. So, I tend to think of treatment for NTM as being as complex as that for multi drug-resistant (MDR) TB, though it’s important to note that there are considerably more cases of NTM nationally than there are MDR TB.
NTM is no different from other illnesses in that we need good population data to be able to plan, deliver and evaluate the services we provide to patients. Adopting a standardised definition has been helpful in enabling us to start to do this; and so understand more about the disease.
The NTM Network was established in 2014, why is it important to have this organisation?
The Network arose as a response to the need for improved management of the rising number of NTM infections identified in clinical practice. We believe it is a vital way to bring together people with an interest in NTM and ensure that patients receive consistent and high-quality care right across the UK. Membership is open to all healthcare professionals, scientists and researchers. We aim to support multi professional approaches to identifying and managing NTM effectively and increase the quantity and quality of research conducted. We were recently granted charitable status, which we feel is important if we are to ensure that NTM and its associated conditions get the attention they deserve.
A collaborative, multi-professional approach has been shown to improve the lives of people affected by respiratory disease, and NTM is no exception. NTM Network UK has ambitious plans - we want to improve the patient experience through simplifying diagnosis and management, support best practice with standards and robust data collection systems, engage in strategic level discussion with services and commissioners, and of course work closely with patients and their carers to improve the information we provide about this often challenging condition.
I want my colleagues to be confident when managing their patients. We need to remember that NTM is rare and therefore clinicians may not see many cases in a single service, though each one can be incredibly complex. Clearly others feel the same and the NTM Network UK has expanded rapidly to over 500 multi-disciplinary healthcare professionals and researchers from more than 200 centres across the UK.
It's important that our patients and their carers have all the information they need to take an active role in decisions about their care. This is particularly so given that despite good national and international guidance from the BTS and other professional bodies, the evidence-base for treatment and care is really quite limited. We recently carried out a national survey of practice and found that one third of services treating people with NTM could not offer any allied healthcare support such as physiotherapy to their patients; and over half of services did not provide any information to their patients about NTM[LM(FLNFT1] . These are some of the drivers that led the NTM Network to develop and launch the national Standards of Care - more of which later!
How is the Network helping to improve the care people with NTM receive?
Thanks to the Network, we now have the world’s first Standards of Care for people living with NTM. Using the published guidance and multi-professional experience and opinion, the Standards set out the level of care that people with NTM should expect to receive in the NHS. They also allow healthcare providers to compare their service to the Standards, and so identify areas of strength and those that may need support and improvement. The Standards took two years to develop and involved over 70 stakeholders and professionals who gave their time for free. It’s really pleasing to see it now launched nationally as I believe that this landmark publication will help to improve the quality and consistency of treatment for people affected by NTM. Also, we had an international advisory board of clinicians from around the world, and so we are hopeful that our Standards will be used by healthcare providers in other countries to help improve patient care elsewhere too.
What are the key messages from the Standards of Care document?
The Standards offer comprehensive guidance for healthcare professionals, including measurable indicators of good practice, allowing services to benchmark themselves and identify areas for improvement. We hope that the document and its metrics offer real and immediate value for clinicians and patients alike. Certainly, they have been very well-received with endorsement already by many key stakeholders.
The implementation of these Standards will enhance diagnostic accuracy, streamline treatment pathways, and significantly improve patient outcomes.
For example, although many patients with NTM are identified by their medical teams when being managed for other conditions such as COPD, bronchiectasis or Cystic Fibrosis, some people will remain undiagnosed for years. This can happen in both primary and secondary care, where common scenarios that should make one think of NTM are non-resolution of infection, or when a patient experiences recurrent exacerbations despite often multiple courses of antibiotics. The Standards recognise this and encourage clinicians to think about NTM disease in this situation.
We are lucky to have the BTS Guidance, which is clear on how to investigate possible NTM lung disease. The new Standards of Care bolsters this and helps colleagues across the multi-professional respiratory team to manage their patients appropriately. This might be through education (for example recognising the pattern of illness described above as possibly due to NTM), or giving them the confidence to request diagnostic tests for mycobacteria and send samples to the lab.
The Standards will inevitably encourage discussion about the organisation and delivery of NTM care. This is important as we need to engage with both services and commissioners if we are to offer world class healthcare to our NTM patients. The final section of the Standards discusses education and research, and we felt this was an integral part of the document if we genuinely want to achieve long-term improvements in healthcare.
How big a problem is it in the UK?
That is quite a tricky question to answer. In simple terms, NTM pulmonary disease is now about as common as TB in the UK. While it is reasonably easy to quantify how much TB we have (as it is notifiable to public health services), NTM is a chronic illness where multiple positive cultures are usually needed before treatment is started. Therefore, we have to distinguish between the number of mycobacterial isolates sent from local laboratories to the UK Reference Labs each year and the number of people who have positive NTM cultures and are unwell due to the infection (in other words, have NTM disease). This is not necessarily straightforward, and so services and labs will often report the prevalence of NTM infections rather than the incidence of disease each year due to NTM.
Guidelines to manage NTM, including those published by BTS, have recommended using a standardised definition of pulmonary disease due to NTM (the ATS/IDSA 2007 definition of NTM, which includes not just repeat isolation of the NTM but also symptoms and radiological changes consistent with disease).
NTM is no different from other illnesses in that we need good population data to be able to plan, deliver and evaluate the services we provide to patients. Adopting a standardised definition has been helpful in enabling us to start to do this; and so understand more about the disease.
I’ve mentioned pulmonary NTM as it is the commonest form of disease, but it is worth remembering they can also cause problems in the skin, and other body sites; as well as sometimes presenting as disseminated, systemic disease.
Has there been a rise in numbers?
There is no doubt that we have seen the prevalence of NTM rise in recent years. This is across the world; and so I don’t think we can put it down to better laboratory detection or an increased awareness of NTM, though these likely contribute to some extent. There are lots of theories to explain why the rise is occurring, many of which include people, who are living longer with chronic lung disease, encountering more NTM in their environment. Although we need further information before we can fully explain the increase, it is important for patients and services that we are aware of this and plan accordingly - including through our sharing of knowledge and expertise now.
How are patients involved?
Although we have patient representation within the NTM Network Management group (and patients and carers were involved in developing the Standards of Care), early-on we recognised the need for specific support for people with NTM, and so helped patients establish an independent group, NTM Patient Care UK – which is the first UK charity specifically for people affected by NTM. We continue to work together closely and in fact you can see us on our joint stand at the Winter BTS meeting. Do come and say hi! More information about NTM Patient Care UK is available here:
https://www.ntmpatientcare.uk/
There is so much to be gained from patients and clinicians forming strong clinical networks. This type of disease can be very challenging and people really value trusted sources of information and support that help them better understand their diagnosis and treatment. We hope people are then more able to explain their care and treatment to their family and friends.
What do you need people to do?
We will only ever be as good as our members. It would be amazing to see all healthcare professionals with an interest in NTM infections join the Network. We are keen to encourage people to visit our website and get involved!