https://www.ntmpatientcare.uk/patient-stories daily 0.75 2026-04-01 https://www.ntmpatientcare.uk/patient-stories/sandras-story monthly 0.5 2026-04-01 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/fef7d804-23de-4c1a-808e-4e337640e460/IMG_4205.jpeg Patient Stories - Sandra’s Story - I was finally diagnosed with Bronchiectasis approx. 14 years ago. Despite feeling quite ill for a prolonged period of time with an accompanying cough and a nasty phlegmy chest, it was incredibly difficult to obtain a diagnosis, and when I finally did, I wasn’t offered any onward management advice in my local area. I had no previous knowledge of what Bronchectiasis was, and felt completley at sea with it all. In desperation I went to see a private physiotherapist, who understood the problem, and put me onto a pulmonary rehab course, which was mighty helpful. However, I still needed to get the proper medical care and after searching online, contacted the Royal Brompton Hospital, who offered me an appt. Thankfully, with the help of the hospital I was able to receive some treatment for the bronchectiasis and fully understand the issue. I was seen regularly until my condition stabilised, and afterwards at 6 monthly intervals, and was given a nebuliser and acapella to use at home. This treatment all made such a difference to my condition and also my mental wellbeing. Each time I attended an appt. at the hospital I would take a sputum sample along with me, and a few years further on, I received a letter from my specialist at the hospital to tell me that they had found NTM in my sputum. I was able to get in touch with my specialist and she assured me not to worry about it as at the time I wasn’t experiencing symptoms from it. However, a few more years on, I did start to experience symptoms, weight loss, night sweats and a general feeling of being unwell again. So, once again I was searching online, trying to understand this additional illness, when I came across NTM Patient Care - I couldn’t believe how fortunate this was. I didn't feel I could keep troubling the hospital with what might seem to them minor queries, and despite their good care, there were still many aspects of this disease which were still worrying me. It so happened that there was to be a meeting for the NTM Group the following week, and although I was going to be out of the country when it took place, I was able to log into it, and well - it was incredible to find a Professor who gave a talk, had an open question time, other patients talking about their experiences with this disease, and it was the most amazing revelation to me. I no longer felt alone with it, and could get all the information I needed to help manage the disease, talk about my personal worries and know when to talk to my specialist about my drug regime. Since then I have attended most, if not all of the quarterly meetings of the NTM Patient Care,I often consult their website, and am able to find answers or guidance for anything I feel I need to know in relation to the disease. At each meeting there is usually a speaker, sometimes a Nurse, or mabe a Physiotherapist, all giving advice on how to manage the disease. It is run by a Professor Lipman from the Royal Free Hospital in London, and to me has been the most amazing discovery. I now sit on the management team for NTM Patient Care along with several other members, and our aim is to make others aware of our organisation, both Health Care Professionals and patients alike. We know that iNTM is a disease which is very difficult to treat, but it is all the uncertainty and stress that accompanies such a diagnosis that can make the patient more unwell, sometimes more so that the symptoms themselves, and even if a patient is being monitored at a hospital (but many aren’t) it is impossible to remember all your questions in your allocated appointment time, and this is where NTM Patient Care is such a tremendous help. https://www.ntmpatientcare.uk/patient-stories/susans-story monthly 0.5 2022-08-15 https://www.ntmpatientcare.uk/patient-stories/sues-story-zxzxf monthly 0.5 2026-04-01 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/4931b910-290a-4346-ba25-d96801b609da/IMG_6818.jpeg Patient Stories - Tanya’s story - Tanya talks about her experience of NTM, her pathway to diagnosis and how she has learnt to manage her condition. I was diagnosed with mild to moderate emphysema in 2012 and given two inhalers. I smoked in the 1970s and 80s but not since. I had a really bad dose of flu in 2005 and after that never really shook off a cough, very occasionally coughing up blood. I began to get regular chest infections. Around 2015 I had a CT scan and was told I had bronchiectasis and was put under the care of a consultant, who I saw every six months or so. At each appointment I was asked to produce a sputum sample which I found really difficult to do in a short amount of time. The consultant advised a variety of antibiotics for the chest infections but they made little difference. I was probably taking antibiotics for two weeks every couple of months and at one point tried a daily antibiotic for a few months. From 2012 I began exercising for at least 15 minutes a day. I increased the time regularly until I was exercising for at least 45 minutes a day, either on a cross trainer, cycling, walking, or sometimes an exercise class. I saw a physio privately who taught me an active breathing technique. However, I was increasingly ill. I was tired all the time and my cough was so bad I would sometimes vomit. A bad coughing fit would leave me exhausted. I was working at a further education college and it was becoming increasingly difficult to do a full day’s work. I loved my job but cut my hours in half. I also wondered if the chest infections were from spending a lot of time around young people, and I was very stressed by coughing in public. In 2018 we moved to Wales for a quieter life and later that year I gave up my job. The following year I was back and forth to the doctors with chest infections and taking antibiotics every 6-8 weeks. I saw a different physio privately who taught me postural drainage which I found much more efficient at bringing up mucus. However, despite postural drainage three times a day, the chest infections continued, and I remained tired and unwell. I no longer saw the consultant because of covid. In April 2020 I coughed up a large amount of blood and was referred to a consultant at the local hospital. At the first meeting she heard me cough and said she knew what to test me for. I had a CT scan and over the next week I did a number of sputum samples which revealed I had a pulmonary mycobacterium avium complex (MAC) infection. I was transferred to the TB clinic and another consultant who thought that from the damage in my lungs, I had had MAC for about four years. I am allergic to two antibiotics, and thus it took a while to find antibiotics that would work. In March 2021 I began taking a combination of rifampicin, ethambutol and azithromycin. After a couple of months, I had more energy and was coughing less. I could walk up hills without collapsing and could sleep at night. I was on the antibiotics for a year. The clinic regularly tested my heart and every two months I provided a sputum sample. The worst impact of NTM was in my right lung where there are two large strips of damage plus a hole of some sort. The consultant also said I didn’t have emphysema, just bronchiectasis, and I could stop using inhalers as long as I didn’t get breathless. I stopped taking the antibiotics in March 2022, but I am still with the clinic and will provide sputum samples every two months to ensure I remain bug free. As well as the physical affects, NTM has required a measure of mental readjustment. Leaving my job was particularly hard and I struggled for months with a lack of purpose. It was a relief to finally get the NTM diagnosis, but it is also disconcerting how pervasive it is in the environment and what I need to do to avoid it and stay well. I try and do at least an hour of exercise a day: a morning walk and then exercise in the afternoon and I also do three sessions of postural drainage every day. I have never sewn before but for my mental health I acquired a sewing machine and so far, have made eight patchwork quilts and a lot of cotton bags. I am also writing a book and learning Latin so life is very good! https://www.ntmpatientcare.uk/patient-stories/sues-story monthly 0.5 2022-06-03 https://www.ntmpatientcare.uk/patient-stories/michaels-story monthly 0.5 2021-06-22 https://www.ntmpatientcare.uk/patient-stories/judis-story monthly 0.5 2021-06-22 https://www.ntmpatientcare.uk/news daily 0.75 2026-04-01 https://www.ntmpatientcare.uk/news/newport-marathon-2026-fundraiser-training-update monthly 0.5 2026-04-01 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/fd3374fa-c509-4805-a6cf-aa485ea3eace/workout.png News - Newport Marathon 2026 Fundraiser - Training Update - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.ntmpatientcare.uk/news/newport-marathon-2026-fundraiser monthly 0.5 2026-03-05 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/083e1954-d1c0-4f27-ab66-a76434a71b92/b9cd69cd-b2cb-4111-8041-314b0974005d.jpg News - Newport Marathon 2026 Fundraiser - Only seven weeks to go until the half marathon on 19th April. All very exciting except training has had to be put on hold for a few weeks. Starting last year my plan was to do one long walk on the treadmill every Wednesday, increasing by half a mile every week. I had reached eight miles which was both heartening and exhausting but then I found out my weight had dropped to 44 kg. I figured that at that weight I should concentrate on eating and not worry too much about the plan. I’ve put on two kilos now so going to try another long walk next week – eight and a half miles here I come! https://www.ntmpatientcare.uk/news/elf-ers-congress-in-amsterdam-2025-annas-blog monthly 0.5 2025-10-21 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1761045982575-1DSOXQE6KD2EW2AZ6AAC/image6.jpg News - ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog - Make it stand out Not kidding - this place is a village. We walked miles going between talks and happenings! https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/ea440ca8-caad-44a4-a205-f1d2d832f4ac/image9.jpg News - ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog - Make it stand out Can you spot me and Fiona in the front row wearing our NTM hoodies? https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/c5ed72a0-7b44-4c08-9a11-92ee946ae8c3/image11.png News - ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/ed171530-c06e-42c3-8c9f-1e9777dc1fa1/image5.png News - ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1761046787622-TJ3AO0LCYHAMWVBQTKIX/image4.jpg News - ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog - I have come home a little more afraid of my own lung diseases, having heard statistics and prognosis broken down. It’s more chronic than I understood. I feel informed to the point of overwhelm, but a lot more impressed by doctors, the world of science and allopathic medicine. I reckon you would have come away similarly. (*Allopathic medicine is a term for the conventional system of medicine that uses treatments like pharmacological drugs, surgery, and radiation therapies to address symptoms and diseases. It is an evidence-based practice that relies on clinical examinations and screening to diagnose conditions and seeks to demonstrate the safety and efficacy of treatments before they are approved and used. In essence, when you encounter a doctor with an MD, they are practicing allopathic medicine, a system focused on scientifically supported and widely available treatments for diseases.) https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1761045475734-T71NQP58QTN7BK7M5QE5/image12.jpg News - ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1761045479312-EEYLVNW1DVBR7NMYUVCO/image8.jpg News - ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1761045562358-OHHIZVI9WN670EBRZCTW/image7.jpg News - ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1761045572198-26JHB62YX2E36VNWLK8N/image1.jpg News - ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1761045662657-BDDDZXSD6ZJJTXAW33MM/image3.jpg News - ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1761045666256-VYJ8OUDO96WLWI97O30E/image10.jpg News - ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/b5edaa44-73ba-42d6-a146-f8af0c5f484c/image2.jpg News - ELF / ERS Congress in Amsterdam 2025 - Anna’s Blog - I am Anna Winstanley, an artist, who was diagnosed with NTM in 2016. Although I have cleared the NTM, I am in relationship with complex respiratory diseases, Bronchiectasis, Asthma, Pseudomonas aeruginosa and a cancer survivor. I found the NTM Patient Care UK charity in 2023 and recently got a bit more involved on the management team. (If you are reading this, you can too ) https://www.ntmpatientcare.uk/news/ers-congress-amsterdam monthly 0.5 2025-10-21 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/d4c5630c-67e3-4c34-894b-5b247757c3d1/ERS+Congress+1 News - ERS Congress, Amsterdam - Fiona’s Blog - ELF Patient Organisation Networking Day 2025 “Improving respiratory health – thinking globally, acting locally” Anna and I spent the morning networking with other representatives from patient organisations, discussing their stories and how they have helped patients all over the world. Presentations included: Our Kids’ climate – a group of parents fighting for healthy air, predominantly focussing upon reducing burning of fossil fuels all over the globe Science under threat: what it means for patient rights and public health Clean air healthy lives movement Crop phenomenon: A model of persistent advocacy to boost childhood vaccination and respiratory health – inspiring talk about improving vaccine uptake with a door-to-door campaigning approach in a community with poor utilisation of healthcare and poor engagement with vaccinations Video reels – patient testimonies and what are patient organisations doing around the world We then heard about the WHO Lung Health Resolution and split into breakout groups to discuss how we can use it as patient organisations to improve lung health. WHO Lung Health Resolution: “Promoting and prioritizing an integrated lung health approach”. This resolution has a broad scope, including noncommunicable lung diseases, such as asthma, COPD, and lung cancer communicable lung diseases, such as pneumonia and tuberculosis relevant risk factors, such as tobacco and air pollution, and occupational exposures https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/9c152a9f-2f44-4153-801d-bf4c3e741c49/WhatsApp+Image+2025-09-29+at+16.38.57.jpeg News - ERS Congress, Amsterdam - Fiona’s Blog - The next 3 days were the ERS Congress main event. We attended a range of symposia and panel discussions about respiratory health, focusing on NTM and bronchiectasis. Symposium: Treatment Decisions in NTM Lung Disease: when to start, when to (de)escalate and when to stop? It was amazing to see a huge theatre filled with hundreds of healthcare professionals at this session. We managed to hijack the exit doors to hand out our flyers for NTM Patient Care and NTM Network, which seemed to go down well! Presentations in this Symposia included: When should antimicrobial therapy be started in NTM pulmonary disease? The Critical Role of the Host in NTM Disease Susceptibility and Management Monitoring disease progression and treatment response: clinical predictors and biomarkers Antimicrobial therapy for NTM lung disease: how long is long enough? Key take home message More research is needed, but there are people out there doing it and there is a growing interest in improving care for NTM patients! Patient-Centred Session: Inequality in pulmonary rehabilitation: barriers to global access for all This session was a discussion between a panel of patients and healthcare professionals, providing insights into how we can improve pulmonary rehabilitation access. They discussed their own experiences, the core components of pulmonary rehabilitation and barriers to the uptake of PR. Finally, they discussed the use of virtual/tele-rehabilitation and how it can achieve similar outcomes to traditional rehab, with better completion rates. Key take home message Pulmonary rehabilitation is essential to good outcomes in long-term lung diseases Forum: A year-in-review in bronchiectasis This session started with a patient testimony from Justine Hamaide, who is a wonderful lady who has set up our sister NTM charity in France (MNT Mon Poumon Mon Air). She gave a talk on her experience with bronchiectasis and NTM. Talks included: Phenotyping and endotyping in Bronchiectasis Antibiotic treatment and exacerbations New therapies and clinical trials in bronchiectasis A nice analogy for bronchiectasis treatment, which came from this session was: you want to manage a house when it is on fire, not after it has burned down, ie it is important to treat during exacerbations, not after the damage has been done! We finished today with brains full of new information and inspired by all of the research that is being done! https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/69114a0c-8cc6-4af9-bc1b-1f32f5cd4541/ERS+Congress+4 News - ERS Congress, Amsterdam - Fiona’s Blog - Today we watched the first talk online, as it had been an early start the past couple of days! Then we headed to the conference to continue our plight to raise awareness of the charity and hand out as many fliers and pens as possible! Presentation: Management of Bronchiectasis in Adults The session started with patient testimonies from three patients with bronchiectasis and how they were involved in making new guidelines for bronchiectasis. This video demonstrated how clinicians are keen to get our opinions and experiences to shape the future for patients with bronchiectasis. They then went on to discuss the new recommendations for the investigation and management of Bronchiectasis, including investigation of the cause, the importance of airway clearance, prompt treatment of exacerbations and when to consider long-term antibiotics. Presentation: Diagnosis of Primary Ciliary Dyskinesia This was an interesting presentation, which again started with patient testimonies. They discussed the different techniques required to diagnose PCD and the importance of diagnosis for patients. Presentations: Tuberculous and non-tuberculous mycobacterial diseases: challenges of diagnostics and management This session contained multiple 5-min abstract presentations, most of which were about TB, rather than NTM. However, there were two about NTM: Impact of climate and urbanisation on NTM infections: in Italian nationwide case-control study Tigecycline dry powdered inhalation to cure mycobacterium abscessus lung disease: a dose finding study We were then able to hand out our flyers (&pens) at the end of the session and managed to have a chat to a few clinicians who were interested to her about the charities! After this, we headed over to the European Lung Foundation stand, where we had left some fliers and pens yesterday. We were delighted to see that all of them had been taken, hopefully by clinicians treating patients with NTM! We spent a short time wandering around the industry exhibition, and took advantage of the free coffee, before escaping for the afternoon, to do a bike tour of Amsterdam! https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/587f7f14-fe83-4ad2-a71c-861c64ca8f20/ERS+Congress+2 News - ERS Congress, Amsterdam - Fiona’s Blog - The final day! Symposium: Best Practice Advances in Front-Line Management to Optimise Clinical Outcomes in Nontuberulous Mycobacterial Lung Disease This was a collection of presentations from clinicians about the investigation and management of NTM – when to treat and when not to treat. They also discussed indicators for worse outcomes at diagnosis. They highlighted the need for more research into the duration of treatment after sputum culture conversion. After this session, we were also able to hand out more flyers and pens, so hopefully will have recruited at least a few clinicians to have a look at our website and maybe even join NTM Network! World Village Presentation This afternoon, we were able to do a presentation in the “World Village” area of the Congress, about NTM Patient Care and what we do. There was a small audience, but every little helps! We also filmed an interview about the charity, which will hopefully appear on the European Lung Foundation’s website in the near future! Attending the ERS Congress has been a brilliant opportunity, not only to promote our charity and hopefully recruit people to the NTM Network, but also to learn about and be inspired by all of the research that is being done into NTM and bronchiectasis. It has demonstrated that there are a lot of clinicians who care about improving the care of patients with NTM and bronchiectasis and new drugs coming out which will hopefully have an impact on our lives in the not-too-distant future! https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/e4980821-9650-4457-a3b3-1349df514094/WhatsApp+Image+2025-09-30+at+14.46.24.jpeg News - ERS Congress, Amsterdam - Fiona’s Blog - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.ntmpatientcare.uk/news/abp-newport-half-marathon-fundraiser monthly 0.5 2025-02-27 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/3cb33aa8-3c7f-4fcc-8285-90153fdf2753/thumbnail_IMG_5951_cropped.jpg News - ABP Newport Half Marathon Fundraiser - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.ntmpatientcare.uk/news/ntm-patient-care-uk-group-zoom-meeting-this-thursday monthly 0.5 2024-04-14 https://www.ntmpatientcare.uk/news/opportunity-for-patients-with-bronchiectasis-to-participate-in-research-study monthly 0.5 2024-03-21 https://www.ntmpatientcare.uk/news/european-lung-foundation-elf-bronchiectasis-patient-conference-2024 monthly 0.5 2024-01-26 https://www.ntmpatientcare.uk/news/4myrmkhmbeg1diezpavucp7wgoyuxv monthly 0.5 2023-12-05 https://www.ntmpatientcare.uk/news/an-amazing-fund-raising-achievement-for-ntm-patient-care-uk monthly 0.5 2023-10-09 https://www.ntmpatientcare.uk/news/a-new-leaflet-on-treatment-of-ntm-is-now-available-from-ntm-patient-care-uk monthly 0.5 2023-08-15 https://www.ntmpatientcare.uk/news/on-line-survey-5lf7z monthly 0.5 2023-07-12 https://www.ntmpatientcare.uk/news/ntm-patient-care-uks-trustee-tanya-sinnett-and-her-daughter-rachel-are-running-the-cardiff-half-marathon-to-raise-money-for-the-charity-and-to-increase-awareness-of-the-condition monthly 0.5 2023-06-16 https://www.ntmpatientcare.uk/news/on-line-survey monthly 0.5 2023-07-12 https://www.ntmpatientcare.uk/news/european-lung-foundation-elf-bronchiectasis-patient-conference monthly 0.5 2023-07-12 https://www.ntmpatientcare.uk/news/exciting-opportunity-to-be-part-of-a-new-project-investigating-the-patient-perspective-around-diagnosing-ntm-disease monthly 0.5 2022-05-04 https://www.ntmpatientcare.uk/news/join-ntm-patient-care-uk-on-our-regular-zoom-calls monthly 0.5 2022-03-03 https://www.ntmpatientcare.uk/news/new-ntm-patient-care-uk-poster-and-ntm-leaflets-now-available monthly 0.5 2022-05-04 https://www.ntmpatientcare.uk/news/ntm-patient-care-uk-provides-evidence-to-the-scottish-medicines-consortium-smc-committee-in-assessment-of-new-ntm-treatment monthly 0.5 2022-05-04 https://www.ntmpatientcare.uk/news/vviifzb1s9jiyslpdc15pxmlchqrcf monthly 0.5 2022-05-04 https://www.ntmpatientcare.uk/news/wcbi483xkmd8y19ti88p2rn2b4ht05 monthly 0.5 2021-06-09 https://www.ntmpatientcare.uk/news/newsversion1 monthly 0.5 2021-03-03 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1614597419559-PV9EOST1Q8827FMMIAYT/Interview+2.jpg News - An interview with Prof Marc Lipman https://www.ntmpatientcare.uk/news/newsversion1-dg85f monthly 0.5 2021-02-21 https://www.ntmpatientcare.uk/zoom daily 0.75 2026-04-01 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1646318900522-CGELZXUA8PW3HKD1T1JT/zoom-share-screen.jpg https://www.ntmpatientcare.uk/zoom/november-2026-zoom-meeting monthly 0.5 2026-04-01 https://www.ntmpatientcare.uk/zoom/march-2026-zoom-meeting monthly 0.5 2026-03-05 https://www.ntmpatientcare.uk/zoom/august-2026-zoom-meeting monthly 0.5 2026-04-01 https://www.ntmpatientcare.uk/zoom/june-2026-zoom-meeting monthly 0.5 2026-04-01 https://www.ntmpatientcare.uk/zoom/january-2026-zoom-meeting monthly 0.5 2026-03-05 https://www.ntmpatientcare.uk/zoom/zoom-meeting monthly 0.5 2025-10-02 https://www.ntmpatientcare.uk/zoom/2-10-25 monthly 0.5 2025-10-03 https://www.ntmpatientcare.uk/what-is-ntm daily 0.75 2021-02-03 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1611744647478-NY2KHWQXXMB7JPTNZA8A/image-asset.jpeg What is NTM - Non-tuberculous mycobacteria (NTM) are common in the environment, for example in soil and water sources. When they infect people, NTM most often cause lung problems. However, they can affect other parts of the body such as the skin and lymph nodes (the “glands”). NTM outside of the lung will usually cause local symptoms, for example a skin wound that does not heal despite antibiotics or a swelling of the affected glands. The information on this page is mostly about NTM lung infection. https://www.ntmpatientcare.uk/about daily 0.75 2025-09-17 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/9ebaaaff-e9d6-4f2e-98d4-458386067482/Rachel+and+Tanya+-+photo+for+website+OCT+2023.jpg About NTM Patient Care UK - Raising awareness of Non-Tuberculous Mycobacteria (NTM) and providing a voice for NTM Patients in the UK. NTM Patient Care UK is a relatively new organisation with big aspirations… we want to improve the lives of people with NTM infection in the UK. https://www.ntmpatientcare.uk/resources daily 0.75 2021-03-01 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1613125526809-I2UZMPSMVDD4ACK0ZGKS/simone-van-der-koelen-HtDQ9Z64Vpo-unsplash.jpg Resources https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1613126670076-VUVOP2UHSC8ATC8TESVZ/IMG-2230.jpg Resources https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1613125552708-GC4FR4MQBE7XIKMQIS4H/sasha-freemind-Pv5WeEyxMWU-unsplash.jpg Resources https://www.ntmpatientcare.uk/get-involved daily 0.75 2025-10-03 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1612433556766-BM9GYOO06CHOJSQMSOC0/image-asset.jpeg Get Involved https://www.ntmpatientcare.uk/coping-with-the-medicines daily 0.75 2025-04-01 https://www.ntmpatientcare.uk/what-is-chest-physiotherapy daily 0.75 2025-09-17 https://images.squarespace-cdn.com/content/v1/5ec321c2af33de48734cc929/1618497259178-6XJGK9GR6YAVBQL5L519/20140301_Trade-151_012-2.jpg What is Chest Physiotherapy https://images.squarespace-cdn.com/content/v1/5ec321c2af33de48734cc929/1607694583486-2PQT0LQ193RL7MCB6DX4/20140228_Trade+151_0046.jpg What is Chest Physiotherapy https://images.squarespace-cdn.com/content/v1/5ec321c2af33de48734cc929/1607694644871-IC85FNH781UNZSZEGHDR/Aro+Ha_0428.jpg What is Chest Physiotherapy https://images.squarespace-cdn.com/content/v1/5ec321c2af33de48734cc929/1607638148090-Y6OFDI575CM3NQV732RJ/Large+JPG-Aro+Ha_0387.jpg What is Chest Physiotherapy https://images.squarespace-cdn.com/content/v1/5ec321c2af33de48734cc929/1607628784608-5D22G9GPLHDSAB2IXC2G/Large+JPG-Aro+Ha_0638.jpg What is Chest Physiotherapy https://images.squarespace-cdn.com/content/v1/5ec321c2af33de48734cc929/1589847743861-GWVMBPD7Z7WQRQL9IZZ8/Large+JPG-Aro+Ha_0380.jpg What is Chest Physiotherapy https://www.ntmpatientcare.uk/home-page daily 1.0 2026-04-01 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1646318900522-CGELZXUA8PW3HKD1T1JT/zoom-share-screen.jpg Home https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1cf175e2-5d8f-4a7e-ae7b-590a723ea8e2/patients+guide.jpg Home https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1613122254443-FWPSKNDF9WQ6LVOS9KH7/priscilla-du-preez-vDzeKnPBPLM-unsplash.jpg Home https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/892fb280-9a55-483e-b917-bd8f883e36f2/cookbook+cover.PNG Home https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/83d03521-dbaf-449e-b8d1-c9bd22f13501/555775879_17847414210570931_5425201552052599974_n.webp Home https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/43731adf-b547-4e33-9430-6638932a7b13/Untitled+design.png Home https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1751791083301-J9ZSCTVOIOPU0ELCJZS0/unsplash-image-nF8xhLMmg0c.jpg https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1701769997260-40J8K6NPBIU77YQER9JN/1000015802.jpg https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1600260812456-8LE8K6PCC7CEVZ803KBW/image-asset.jpeg https://www.ntmpatientcare.uk/acbt daily 0.75 2020-10-08 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1600271622708-H17NFR4026N1HTKF9S6H/ACBT+1.png Active cycle of breathing technique (ACBT) https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1600271634142-MFCZB8ZESX15Y7WHTF09/ACBT+2.png Active cycle of breathing technique (ACBT) https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1600271649594-J4GTDT7C2AE2ARRI85T5/ACBT+3.png Active cycle of breathing technique (ACBT) https://www.ntmpatientcare.uk/autogenic-drainage-1 daily 0.75 2020-10-08 https://www.ntmpatientcare.uk/postural-drainage daily 0.75 2020-10-08 https://www.ntmpatientcare.uk/exercise daily 0.75 2020-10-08 https://www.ntmpatientcare.uk/devices daily 0.75 2020-10-08 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1600351940913-K4JUUAMV6PBN3W0CRXJ1/AcapellaGrnDSpng.png Devices https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1600352159759-04JA5QEWXJQEH6YYW4A8/Aerobika.png Devices https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1600352138700-X3VWGQC7KY1QYZ1Y2PU2/Flutter-1-slider.png Devices https://www.ntmpatientcare.uk/ntm-mental-health daily 0.75 2025-09-17 https://www.ntmpatientcare.uk/trustees daily 0.75 2024-04-10 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/35b4ead8-3644-466d-8e80-19c59b7557f4/Tanya+Sinnett.jpg Trustees - Tanya Sinnett We are very pleased to welcome our newest trustee Tanya Sinnett to NTM Patient Care UK. Tanya has a PhD in history and last worked as an Early Years assessor and IQA for an FE college. After being ill for many years she was eventually diagnosed with NTM in 2021. Tanya is also a member of the NTM Patient Care UK Management Group. https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/ed165b97-2978-479e-8b3f-f708c804b410/Shirleys+photo+for+trustee+page+Feb+2022.jpg Trustees - Shirley Harwood Shirley trained as a nurse, midwife & health visitor and practised for many years before her retirement a few years ago. Shirley was diagnosed with NTM (MAC) in 2008 following a CT scan & bronchoscopy, after having been unwell for several months. She brings not only her patient perspective to the NTM Patient Care UK trustee group, but also her healthcare background and equally importantly, her drive and enthusiasm, which have helped ensure NTM Patient Care UK continues to grow and help more NTM patients. https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/b7031449-aaaa-4c65-9677-4f9ce0bee423/Marc+Lipman+Image+2020.jpg Trustees - Prof Marc Lipman Marc Lipman leads a specialist clinical service with an interest in NTM and mycobacterial disease management and research. He is one of the founders of NTM Patient Care UK. https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/af8808f3-eba0-420a-b73c-a9cec219c369/Heather+photo+%28from+NTM+PC+UK+trustees+webpage%29.JPG Trustees - Prof Heather Milburn Heather Milburn is an honorary consultant respiratory physician who continues to undertake research into NTM disease at Guy’s and St Thomas’s. https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/f909515f-a4a5-44af-bb48-8cc87d659e38/ProfMichaelKing Trustees https://www.ntmpatientcare.uk/external-resources daily 0.75 2025-03-28 https://www.ntmpatientcare.uk/donate daily 0.75 2023-01-23 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1612360824732-6WHWOCQ5AW8H0YW85PCL/image-asset.jpeg Donate https://www.ntmpatientcare.uk/general-2 daily 0.75 2021-04-03 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1617441481077-Q7XISUKA4L12AO7M8ME2/ers_logo_final_white.jpg Research reports What is important for people with NTM disease? Read the results of an EMBARC-ELF patient survey EMBARC (European Multicentre Bronchiectasis Audit and Research Collaboration) is a European Respiratory Society (ERS) clinical research collaboration. ELF is the European Lung Foundation (ELF) to involve people with bronchiectasis in research and promotion of care. This is the report of the patients’ views published 2021 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1617440140397-IQKZMU7RLTA9GIONJUC3/IJID.jpg Research reports https://www.ntmpatientcare.uk/faqs daily 0.75 2025-09-17 https://www.ntmpatientcare.uk/reviews-1-1 daily 0.75 2023-02-16 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1617271005370-DV2F5PQ987S0VKXZ7WCK/General-Consultation.jpg Summary of clinical management https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1617267841082-MVGGB8TRI735MO241DDB/CT+Scan.jpg Summary of clinical management Chest X-rays and CT Scans Both chest X-rays and CT scans help your doctor to make the diagnosis of NTM lung disease. However, they are also important in assessing how things change over time. You will first have a chest X-ray and/or CT scan to assess the extent of NTM disease and whether you might need antibiotic treatment. How often you have follow-up X-rays or scans will depend on the nature of the disease and how unwell you are. Generally, a repeat X-ray will be carried out within the first 2-3 months. CT scans are usually done less often than X-rays. https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1617267870573-6J9F445UVHI09V9AJZNL/Blood+test.jpg Summary of clinical management Blood tests How many blood tests are done before your doctor starts medical treatment will depend on the type of treatment planned for you. It will also depend on your general health. Many older patients have other medical problems and take other medicines. So, your doctor will want to check that there is no clash between the antibiotics you are about to start and the medication you are already taking. For most people this is not a major problem. A general recommendation for patients starting out on triple antibiotic therapy is to obtain tests of your liver and kidney function - as well as testing the blood itself, for example to make sure you are not anaemic. These will be carried out when you first see the specialist, 2 weeks after starting the antibiotics and then monthly for three months. If all is well, this testing could then take place every 6 months or so. This will vary according to your general health at the start of treatment and any subsequent adverse effects that arise, including if you need to change your medication. https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1617268503337-UICLHNUQLOCMRVKEITKS/ECG.jpg Summary of clinical management Eyesight and hearing tests The antibiotics may very occasionally cause changes to your eyesight and hearing. These very rare side effects are usually reversible when caught early. Thus, you will undergo eyesight and hearing tests before starting and then about twice a year thereafter. Electrocardiogram (ECG) Some medications (including the antibiotics azithromycin and clarithromycin used to treat NTM) can affect the electrical pattern of the heart, and so recording an ECG is a precaution to make sure all is well and stays well. You may therefore have an ECG at the start of treatment to check this, and then from time to time if necessary. https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1617268758740-B9DKONM8865UJQJ59DKJ/woman+on+floor.jpg Summary of clinical management Lung function tests You will usually have had your lung function measured while your doctor was making the diagnosis of NTM infection. Knowing about the function of your lungs at the start of treatment also helps your clinicians monitor your improvements. It will also help the physiotherapist who advises you (see below). Physiotherapy Your clinician should refer you to a respiratory physiotherapist, who will make a personalised assessment of your breathing and how to improve it. This can include advice on clearing sputum, managing cough and breathlessness, exercise programmes and living with a chronic illness. There is much more on this website about how physiotherapy can help to keep your lungs healthy. https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1617268944731-51KKQYFU67KHEBHS9UZ0/lab+2.jpg Summary of clinical management Sputum (phlegm) tests You will be asked to give regular sputum samples to monitor the effect of treatment on the number of NTM bugs present in your sputum. The length of antibiotic treatment is usually guided by whether and for how long these are no longer found. Generally, treatment is continued for a year once the sputum becomes free of NTM bugs. Dietary advice Advice on diet and maintaining a healthy weight can be crucial, especially as many patients are underweight at the time of diagnosis. Maintaining a normal weight will help you to fight the NTM infection as well as preventing its return when you finish your course of antibiotics. Ask to be referred to a dietician, who will help with this, as well as advise on maintaining intake of important vitamins such as Vitamin D. A pdf of this page can be downloaded here A pdf of this page in French can be downloaded here https://www.ntmpatientcare.uk/physiotherapy-download-documents daily 0.75 2021-05-18 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1621342474422-C30GZ0490IX0WHDJ35D5/Cloulds+2.JPG Physiotherapy Guide - A guide to chest physiotherapy You can download a printable form of these chest physiotherapy guides by clicking on the button https://www.ntmpatientcare.uk/new-page daily 0.75 2024-01-21 https://www.ntmpatientcare.uk/home-page-1 daily 0.75 2025-07-30 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1600354452573-X40GABTQKSD5NXU88X3R/Vertical+Lockup-01.png Home (Copy) https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1600260546456-FIX5DI47NTPLFGJ1XU0W/image-asset.jpeg Home (Copy) - Who we are NTM Patient Care UK is a patient association for people with non-tuberculous mycobacterial (NTM) infections. https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1600260812456-8LE8K6PCC7CEVZ803KBW/image-asset.jpeg Home (Copy) - Aims NTM Patient Care UK is a patient association and registered charity that is working to improve the lives of people with non-tuberculous mycobacterial (NTM) infection in the UK. We are doing this by providing education and information to increase understanding of NTM in both the clinical and patient communities. We are also working hard to improve support for NTM patients, their carers and families. https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1643653008382-XAAZ7ZJMC0CIOBR6JT2F/Picture+of+materials+for+website.jpg Home (Copy) - What we do. Amongst our many activities; We represent and provide a voice for NTM patients and their wider community. NTM Patient Care UK has developed leaflets & posters for both NTM patients and healthcare professionals. We participate in, and influence research that can benefit NTM patients. NTM Patient Care UK hosts regular Zoom meetings (see below) for patients and healthcare professionals. We provide support, information & resources to NTM patients via the NTM Patient Care UK website. https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/1646318900522-CGELZXUA8PW3HKD1T1JT/image-asset.jpeg Home (Copy) We host regular Zoom meetings for NTM patients to discuss issues and topics that are important to them. These are very informal meetings and everyone is welcome. To attend these Zoom meetings; either contact us at info@ntmpatientcare.uk or via the form below. https://www.ntmpatientcare.uk/reducing-exposure daily 0.75 2025-09-28 https://www.ntmpatientcare.uk/store daily 0.75 2025-11-18 https://www.ntmpatientcare.uk/store/p/c9kjuteili8yad0dlqzbd5sn25qyt9 monthly 0.5 2025-11-18 https://images.squarespace-cdn.com/content/v1/5f5ca10c8e9f97526862c11d/892fb280-9a55-483e-b917-bd8f883e36f2/cookbook+cover.PNG Store - Food, Glorious Food