More Than a Referral Centre: How the National Aspergillosis Centre Supports Patients and Healthcare Professionals Across the UK
Combining specialist clinical care, diagnostics, multidisciplinary expertise, patient support, education and research to improve outcomes for people living with Chronic Pulmonary Aspergillosis.
The National Aspergillosis Centre (NAC) was established by NHS England to provide highly specialised care for people living with Chronic Pulmonary Aspergillosis (CPA), a serious fungal lung disease that can develop in patients with pre-existing respiratory conditions.
Over the last sixteen years the service has evolved into much more than a referral clinic. Today, NAC combines specialist clinical care, advanced diagnostics, multidisciplinary expertise, patient support, education and research, working alongside local healthcare teams throughout the UK.
Many clinicians are familiar with NAC as a specialist referral service. However, fewer may be aware of the breadth of support available through the centre, including specialist multidisciplinary team discussions, diagnostic expertise, physiotherapy, nursing support, pharmacy services, patient education programmes and nationally recognised fungal diagnostics.
This article provides an overview of how NAC supports both patients and healthcare professionals in the diagnosis and management of Chronic Pulmonary Aspergillosis.
"The National Aspergillosis Centre exists not only to care for patients with Chronic Pulmonary Aspergillosis, but also to support healthcare professionals throughout the UK in diagnosing and managing this complex condition."
Contents
- Why specialist support matters
- What does NAC do?
- Working with local teams
- Benefits for patients
- Benefits for healthcare professionals
- Patient support and education
- Research, education and innovation
- Why awareness still matters
- Further resources
- Working together
Why specialist support matters
Chronic Pulmonary Aspergillosis (CPA) is a serious fungal lung disease that can develop in people with pre-existing respiratory conditions including bronchiectasis, Chronic Obstructive Pulmonary Disease (COPD), previous tuberculosis, sarcoidosis and other structural lung diseases.
Patients may present with chronic cough, breathlessness, fatigue, weight loss, recurrent chest infections or haemoptysis. These symptoms frequently overlap with more common respiratory conditions, making diagnosis challenging.
CPA remains a relatively uncommon disease and many clinicians may encounter only a small number of cases during their careers. As a result, specialist support can be valuable when diagnosis is uncertain, investigations are difficult to interpret or treatment becomes complex.
The National Aspergillosis Centre was established to provide that support.
What does the National Aspergillosis Centre do?
NAC is commissioned by NHS England to provide highly specialised care for patients with Chronic Pulmonary Aspergillosis.
The service supports patients through:
- Specialist assessment and diagnosis
- Multidisciplinary review of complex cases
- Long-term disease monitoring
- Antifungal treatment planning and optimisation
- Therapeutic drug monitoring
- Assessment and management of antifungal resistance
- Management of drug interactions and adverse effects
- Specialist physiotherapy support
- Specialist nursing support
- Access to clinical research and trials
Every new CPA diagnosis is reviewed within a specialist multidisciplinary team, helping to ensure a consistent and evidence-based approach to diagnosis and management.
NAC in 2023–24
- 209 referrals assessed for aspergillosis
- 101 new confirmed CPA diagnoses
- 311 patients under active specialist follow-up
- 71 external cases discussed through the National MDT
- 56 remote advice and guidance consultations
Working with local teams
One of the most common misconceptions about referral is that patients must transfer all of their care to Manchester.
In reality, NAC operates primarily through a shared-care model.
Wherever possible, investigations, imaging, monitoring and routine care are organised locally, with NAC providing specialist input and treatment recommendations. This approach allows patients to benefit from national expertise while remaining close to home.
The service also supports healthcare professionals through remote advice, specialist consultation and participation in the National Multidisciplinary Team (MDT) meeting.
For many clinicians, discussing a case through the MDT can help clarify diagnosis, identify additional investigations and support treatment decisions before or alongside formal referral.
Benefits for patients
Patients referred to NAC gain access to one of the world's largest specialist CPA services.
Benefits include:
- Specialist review by clinicians with extensive experience in fungal lung disease
- Diagnostic clarification and confirmation
- Optimisation of antifungal therapy
- Management of treatment-related complications
- Access to specialist physiotherapy and nursing support
- Educational resources and self-management support
- Opportunities to participate in research
For many patients, specialist review provides reassurance, a clearer understanding of their condition and confidence in their treatment plan.
Benefits for healthcare professionals
The National Aspergillosis Centre exists not only to support patients, but also to support healthcare professionals.
Referral or specialist discussion may be particularly useful when:
- The diagnosis remains uncertain
- Radiological findings are difficult to interpret
- Patients are not responding as expected
- Antifungal toxicity develops
- Resistance is suspected
- A specialist second opinion would be valuable
Clinicians also gain access to expertise in therapeutic drug monitoring, antifungal stewardship, complex fungal diagnostics and long-term disease management.
Each referral creates opportunities for shared learning, helping local teams build experience and confidence in recognising and managing aspergillosis.
Patient support and education
One of the most distinctive features of the National Aspergillosis Centre is the support available beyond routine clinical care.
Many patients referred to NAC have experienced a long and sometimes frustrating journey to diagnosis. Symptoms may have been present for months or years before Chronic Pulmonary Aspergillosis is recognised.
Following diagnosis, patients are often faced with an unfamiliar condition and may encounter alarming information online that relates to very different forms of aspergillosis. It is therefore common for patients and families to feel anxious, isolated and uncertain about what the future may hold.
For this reason, patient support forms an important part of the NAC service.
Through the Community, Awareness, Research, Education and Support (CARES) programme, patients have access to:
- Regular patient support meetings
- Educational webinars and presentations
- Health and wellbeing sessions
- Patient newsletters
- Online information resources
- The Aspergillosis Patients and Carers website
- Peer support opportunities
One of the most common comments from newly diagnosed patients is the relief of discovering that they are not facing the condition alone. Meeting others living with aspergillosis and having access to trusted information can make a significant difference to confidence, understanding and long-term self-management.
"For many patients, finding the CARES programme is the moment they realise they are no longer facing aspergillosis on their own."
By combining specialist clinical care with education, support and community, NAC aims to help patients and families feel informed, supported and empowered throughout their journey.
Research, education and innovation
The National Aspergillosis Centre works closely with the Mycology Reference Centre Manchester (MRCM), one of Europe's leading specialist fungal diagnostic laboratories.
Together, NAC and MRCM contribute to:
- Clinical trials of new antifungal therapies
- Development of new diagnostic techniques
- Antifungal resistance surveillance
- National and international clinical guidelines
- Professional education and training
- Patient-centred research
The partnership has been recognised internationally through European Confederation of Medical Mycology (ECMM) Diamond Centre of Excellence status.
This close integration of clinical care, diagnostics, education and research helps ensure that patients benefit from the latest developments in fungal disease management.
Why awareness still matters
Chronic Pulmonary Aspergillosis remains an under-recognised disease worldwide.
Many patients present with symptoms that overlap with more common respiratory conditions such as COPD, bronchiectasis or previous tuberculosis. As a result, diagnosis can sometimes be delayed or missed.
This is not because clinicians are failing. CPA is an uncommon disease that can closely resemble more familiar respiratory conditions.
The role of NAC is therefore not simply to provide specialist treatment, but also to support earlier recognition of CPA through education, diagnostic support and collaborative working with healthcare professionals throughout the UK.
By raising awareness and improving access to specialist expertise, we hope to help more patients receive timely diagnosis, appropriate treatment and long-term support.
Further resources
- Aspergillosis Patients & Carers Website
- Chronic Pulmonary Aspergillosis Information Hub
- Patient Support Resources
- World Aspergillosis Day Resources
- Mycology Reference Centre Manchester
Working together
The National Aspergillosis Centre was established to ensure that patients with Chronic Pulmonary Aspergillosis have access to specialist expertise wherever they live.
Through shared-care working, multidisciplinary collaboration, specialist diagnostics, patient support, education and research, NAC continues to work alongside healthcare professionals throughout the UK to improve outcomes for people living with fungal lung disease.
Whether through referral, multidisciplinary discussion, specialist advice or educational resources, our aim remains the same: helping clinicians diagnose and manage aspergillosis with confidence while ensuring patients receive the support they need.
NAC is more than a referral centre. It is a national resource for patients, clinicians and healthcare services working together to improve the diagnosis and management of Chronic Pulmonary Aspergillosis.
Professional Aspergillosis Update: May 2026
Audience: respiratory physicians, infectious diseases physicians, clinical microbiologists, haematologists, pharmacists, specialist nurses, laboratory scientists and researchers with an interest in aspergillosis.
Contents
Key messages
- Isavuconazole therapeutic drug monitoring may have a selective role. Although isavuconazole is usually more predictable than voriconazole, real-world pharmacokinetic variability remains clinically relevant in some patients.
- Posaconazole prophylaxis should not automatically be avoided with midostaurin. The interaction is real, but clinical consequences may often be manageable with careful monitoring.
- Surrogate azole susceptibility testing has limits. Voriconazole gradient diffusion testing may help screen for broader azole resistance, but it should not replace direct susceptibility testing where treatment decisions depend on the result.
- Invasive fungal sinusitis remains a high-mortality emergency in haematological malignancy. Early tissue diagnosis, ENT involvement and multidisciplinary management remain central.
- Non-fumigatus Aspergillus species are becoming more important research targets. New CRISPR-Cas9 tools for Aspergillus calidoustus may support future work on virulence and antifungal resistance.
Top papers this month
1. Isavuconazole pharmacokinetics and pharmacodynamics in real-world practice
Guidi M, Couchepin J, Reinhold I, Kronig I, Neofytos D, Schreiber PW, André P, Buclin T, Lamoth F.
Characterization of isavuconazole pharmacokinetics and pharmacodynamics in a real-life cohort.
JAC Antimicrobial Resistance. 2026;8(3):dlag071.
PMID: 42088097
Why this paper was selected
Isavuconazole is increasingly used for invasive aspergillosis because of its favourable safety profile and generally more predictable pharmacokinetics compared with voriconazole. This study provides important real-world evidence that clinically relevant interpatient variability still occurs and that therapeutic drug monitoring may have a role in selected patients.
Key findings
- Isavuconazole showed relatively predictable pharmacokinetics overall.
- Clinically relevant variability in drug exposure was still observed between patients.
- Therapeutic drug monitoring identified patients with atypically low or high exposure.
- Exposure relative to fungal minimum inhibitory concentration may be more informative than plasma concentration alone.
- No strong concentration-dependent toxicity signal was observed within the exposure range studied.
Clinical significance
This paper challenges the assumption that isavuconazole therapeutic drug monitoring is rarely useful. While the findings do not justify universal routine monitoring, they support selective monitoring in complex patients, particularly where there is treatment failure, suspected malabsorption, significant drug interactions, unusual body composition, long-term therapy, or infection with isolates showing elevated minimum inhibitory concentrations.
Implications for practice
Classification: Important but not yet practice changing.
The study supports a more individualised approach to isavuconazole use. It also reinforces the direction of travel in antifungal stewardship: interpreting drug exposure alongside fungal susceptibility rather than considering plasma concentrations in isolation.
Evidence assessment
Evidence quality: Moderate. The real-world dataset and pharmacokinetic-pharmacodynamic modelling strengthen the evidence base, but the observational design limits causal inference and definitive exposure targets were not established.
Editorial assessment
This is one of the most clinically relevant antifungal pharmacology papers in this update. It does not establish mandatory isavuconazole monitoring, but it provides a strong argument for selective therapeutic drug monitoring in high-risk or complex aspergillosis patients.
2. Managing posaconazole and midostaurin interactions in FLT3-mutated AML
Joisten CS, Mellinghoff SC, Seidel D, Müller C, Müller-Ohrem C, Kreuzer K-A, Frenzel LP, Simon F, Hallek M, Koehler P, Cornely OA, Stemler J.
Clinical impact of potential drug-drug interactions between midostaurin and posaconazole in FLT3-mutated AML.
Antimicrobial Agents and Chemotherapy. 2026;70(6):e01951-25.
PMID: 42118097
Why this paper was selected
Posaconazole prophylaxis is central to prevention of invasive aspergillosis in patients undergoing intensive acute myeloid leukaemia treatment. Midostaurin is metabolised through CYP3A4, and posaconazole is a potent CYP3A4 inhibitor. This study addresses a common real-world dilemma: whether this interaction should alter antifungal prophylaxis practice.
Key findings
- The pharmacokinetic interaction between posaconazole and midostaurin was confirmed.
- Clinical toxicity appeared less severe than theoretical concerns might suggest.
- Many patients were able to receive both agents without major treatment-limiting toxicity.
- Individual variability in exposure and tolerability remained important.
- The findings support continued attention to monitoring rather than automatic avoidance of posaconazole.
Clinical significance
This paper is important because it addresses an immediate bedside decision. Avoiding posaconazole because of interaction concerns may leave high-risk acute myeloid leukaemia patients vulnerable to invasive aspergillosis. The study suggests that the interaction is clinically manageable in many patients when appropriate monitoring and multidisciplinary oversight are in place.
Implications for practice
Classification: Important but not yet practice changing.
The paper supports continued use of posaconazole prophylaxis where clinically indicated, with careful monitoring for toxicity and close collaboration between haematology, infectious diseases, microbiology and pharmacy teams.
Evidence assessment
Evidence quality: Moderate. The study is clinically relevant and real-world, but observational. It does not establish definitive dose-adjustment protocols or replace existing guideline recommendations.
Editorial assessment
The key message is that proven antifungal prophylaxis should not be abandoned solely because of theoretical interaction concerns. The interaction is real, but careful monitoring is generally preferable to withholding protection against invasive aspergillosis in a very high-risk group.
3. Can voriconazole susceptibility predict isavuconazole or posaconazole susceptibility?
Vahedi-Shahandashti R, Nickel A-S, Eisele D, Lass-Flörl C; ISHAM Working Group Member of Intrinsic Antifungal Resistance.
Can voriconazole gradient diffusion testing results be extrapolated to isavuconazole and posaconazole in Aspergillus spp.? Comparative analysis with CLSI broth microdilution and cyp51A gene sequencing.
Antimicrobial Agents and Chemotherapy. 2026;70(6):e01813-25.
PMID: 42138696
Why this paper was selected
Azole resistance in Aspergillus species is a growing problem, but not all laboratories can perform comprehensive susceptibility testing for every triazole. This paper asks whether voriconazole gradient diffusion testing can be used as a practical surrogate marker for broader azole susceptibility.
Key findings
- Voriconazole susceptibility often correlated with broader azole susceptibility patterns.
- Elevated voriconazole minimum inhibitory concentrations frequently corresponded with reduced isavuconazole susceptibility.
- Prediction of posaconazole susceptibility was less reliable.
- Discordant susceptibility profiles occurred, particularly among resistant isolates.
- cyp51A sequencing helped explain many resistance patterns but did not account for all phenotypes.
Clinical significance
The study supports voriconazole gradient diffusion testing as a useful first-line screening approach, especially where full reference testing is not immediately available. However, it also highlights a critical limitation: susceptibility to one triazole cannot be assumed to guarantee susceptibility to another.
Implications for practice
Classification: Important but not yet practice changing.
Voriconazole gradient diffusion testing may help identify isolates that require further investigation, but it should not replace direct isavuconazole or posaconazole susceptibility testing where treatment decisions depend on accurate results.
Evidence assessment
Evidence quality: Moderate to high for a laboratory diagnostic study. The use of CLSI broth microdilution and cyp51A sequencing strengthens the analysis, but clinical outcome data were not assessed.
Editorial assessment
This is a practical paper for clinical mycology laboratories. The main message is that surrogate azole testing can support screening and stewardship, but definitive treatment decisions should still be based on agent-specific susceptibility testing and molecular resistance analysis where available.
4. Invasive fungal sinusitis in haematological malignancy
Athni TS, Strauch CB, Kovac V, Arbona-Haddad E, Villa IP, Gupta S, Aleissa MM, Liakos AD, Tong A, Vedula RS, Maxfield AZ, Bergmark RW, Sherman AC.
Invasive fungal sinusitis in patients with hematological malignancies: a 20-year study from a tertiary academic US hospital system.
Open Forum Infectious Diseases. 2026;13(6):ofag304.
PMID: 42238379
Why this paper was selected
Invasive fungal sinusitis is a severe but less commonly discussed manifestation of invasive mould disease. In haematological malignancy, delayed recognition can lead to orbital, intracranial and fatal complications. This 20-year cohort provides useful long-term clinical insight.
Key findings
- Aspergillus species and Mucorales were the dominant pathogens.
- Mortality remained substantial despite modern antifungal therapy and supportive care.
- Early imaging, endoscopic assessment, tissue biopsy and histopathology remained central to diagnosis.
- Successful management frequently required combined medical and surgical approaches.
- Multidisciplinary care involving haematology, infectious diseases, ENT, microbiology and radiology was essential.
Clinical significance
This study reinforces that invasive aspergillosis is not solely a pulmonary disease. Sinonasal invasive fungal disease remains an emergency in profoundly immunocompromised patients. Distinguishing aspergillosis from mucormycosis is particularly important because antifungal treatment choices differ substantially.
Implications for practice
Classification: Important but not practice changing.
The paper reinforces existing best practice: early suspicion, urgent ENT involvement, tissue diagnosis, prompt antifungal therapy and multidisciplinary management.
Evidence assessment
Evidence quality: Moderate. The long observation period and detailed clinical experience are strengths, but the retrospective single-system design limits causal conclusions.
Editorial assessment
This paper is a useful reminder that early recognition remains one of the strongest determinants of outcome in invasive fungal disease. Persistent or atypical sinus symptoms in high-risk haematology patients should prompt urgent assessment rather than routine treatment as uncomplicated bacterial sinusitis.
Important development
5. Invasive mould infections in transplant recipients
Sudhaharan S, Pamidimukkala U, Bojja S, Raju DSB, Kk R, Gopal PSS.
Invasive mold infections among transplant recipients: a single-center observational study.
Journal de Mycologie Médicale / Journal of Medical Mycology. 2026;36(2):101629.
DOI: 10.1016/j.mycmed.2026.101629
Why this paper was selected
Transplant recipients remain a key high-risk population for invasive aspergillosis and other invasive mould infections. This observational study provides contemporary real-world data on presentation, diagnosis, microbiology, treatment and outcomes in a transplant centre.
Key findings
- Aspergillus species remained the predominant mould pathogen.
- Pulmonary disease was the most common presentation.
- Diagnosis required multimodal assessment combining clinical, radiological and mycological data.
- Invasive mould infections remained associated with substantial morbidity and mortality.
- Earlier diagnosis was associated with more favourable outcomes.
Clinical significance
The study confirms rather than changes current understanding. Its main value is as a contemporary reminder that invasive aspergillosis remains a major threat in transplantation despite advances in prophylaxis, diagnostics and antifungal treatment.
Implications for practice
Classification: Important but not practice changing.
The findings support ongoing vigilance, rapid investigation pathways, early multidisciplinary input and antifungal stewardship in transplant programmes.
Evidence assessment
Evidence quality: Moderate. Real-world applicability is useful, but the single-centre observational design and modest sample size limit generalisability.
Editorial assessment
This paper does not introduce a new management strategy, but it reinforces an enduring message: invasive aspergillosis outcomes in transplant recipients remain strongly dependent on early recognition and timely treatment.
Research horizon
6. CRISPR-Cas9 gene editing in Aspergillus calidoustus
Hollomon JM, Dahlstrom KM.
CRISPR-Cas9-mediated targeted gene deletion in Aspergillus calidoustus, a non-model environmental mold.
Microbiology Spectrum. 2026;14(6):e03899-25.
PMID: 42112836
Why this paper was selected
Most molecular understanding of pathogenic Aspergillus species comes from Aspergillus fumigatus. This study establishes a CRISPR-Cas9 gene-editing system for Aspergillus calidoustus, an emerging opportunistic mould with clinical relevance and reduced susceptibility to some antifungals.
Key findings
- The authors successfully developed a CRISPR-Cas9 platform for targeted gene deletion in A. calidoustus.
- The system provides a method for functional genetic studies in a previously less tractable species.
- The platform may support future research into virulence, environmental adaptation, antifungal resistance and novel drug targets.
Clinical significance
There is no immediate clinical application. However, the study is important as enabling science. As non-fumigatus Aspergillus species are increasingly recognised in clinical practice, tools that allow their biology to be studied directly may become increasingly valuable.
Implications for practice
Classification: Early-stage research requiring further validation.
This paper does not alter clinical management, diagnostics or guidelines. Its value lies in supporting future translational research.
Editorial assessment
This is a foundational research paper. It will not change patient care today, but it may help build the scientific infrastructure needed to understand emerging mould pathogens and their resistance mechanisms over the next decade.
Clinical pearl
7. Primary traumatic cutaneous aspergillosis caused by Aspergillus terreus
Ing SK, Lee YH, Tan YY, Aziz MBA, Chang AKW.
Primary traumatic cutaneous aspergillosis of the hand caused by Aspergillus terreus following a mould-contaminated penetrating injury.
Medical Mycology Case Reports. 2026;52:100798.
PMID: 42237979
Why this case was noted
This case report describes primary traumatic cutaneous aspergillosis of the hand caused by Aspergillus terreus following a mould-contaminated penetrating injury.
Clinical take-home points
- Aspergillosis is not always acquired through inhalation.
- Direct traumatic inoculation can cause localised Aspergillus infection.
- Persistent or atypical wounds following mould-contaminated trauma should prompt consideration of fungal infection.
- Tissue sampling is essential for diagnosis.
- Species-level identification matters because Aspergillus terreus is intrinsically resistant to amphotericin B.
Editorial assessment
This is not a practice-changing paper, but it is a useful educational case. It broadens clinical awareness beyond pulmonary aspergillosis and highlights the importance of early tissue diagnosis when wounds behave unexpectedly after contaminated trauma.
Overall editorial summary
The May 2026 literature contains several papers that are useful for clinicians and laboratory professionals working in aspergillosis and invasive mould disease. The strongest clinical themes are antifungal stewardship, drug exposure, azole resistance, and the continued importance of early diagnosis in high-risk populations.
The isavuconazole pharmacokinetic-pharmacodynamic study and the midostaurin-posaconazole interaction paper are particularly relevant because they address practical treatment decisions. The azole susceptibility study is highly relevant to clinical mycology laboratories and reinforces the need for careful interpretation of surrogate resistance testing. The invasive fungal sinusitis and transplant studies reinforce a familiar but important message: outcomes remain closely linked to early recognition, tissue diagnosis where appropriate, and multidisciplinary management.
Finally, the CRISPR-Cas9 paper and traumatic cutaneous aspergillosis case illustrate the breadth of modern aspergillosis research, from molecular tools for emerging moulds to unusual clinical presentations outside the respiratory tract.
References
- Guidi M, Couchepin J, Reinhold I, Kronig I, Neofytos D, Schreiber PW, André P, Buclin T, Lamoth F. Characterization of isavuconazole pharmacokinetics and pharmacodynamics in a real-life cohort. JAC Antimicrobial Resistance. 2026;8(3):dlag071. PMID: 42088097
- Joisten CS, Mellinghoff SC, Seidel D, Müller C, Müller-Ohrem C, Kreuzer K-A, Frenzel LP, Simon F, Hallek M, Koehler P, Cornely OA, Stemler J. Clinical impact of potential drug-drug interactions between midostaurin and posaconazole in FLT3-mutated AML. Antimicrobial Agents and Chemotherapy. 2026;70(6):e01951-25. PMID: 42118097
- Vahedi-Shahandashti R, Nickel A-S, Eisele D, Lass-Flörl C; ISHAM Working Group Member of Intrinsic Antifungal Resistance. Can voriconazole gradient diffusion testing results be extrapolated to isavuconazole and posaconazole in Aspergillus spp.? Comparative analysis with CLSI broth microdilution and cyp51A gene sequencing. Antimicrobial Agents and Chemotherapy. 2026;70(6):e01813-25. PMID: 42138696
- Athni TS, Strauch CB, Kovac V, Arbona-Haddad E, Villa IP, Gupta S, Aleissa MM, Liakos AD, Tong A, Vedula RS, Maxfield AZ, Bergmark RW, Sherman AC. Invasive fungal sinusitis in patients with hematological malignancies: a 20-year study from a tertiary academic US hospital system. Open Forum Infectious Diseases. 2026;13(6):ofag304. PMID: 42238379
- Sudhaharan S, Pamidimukkala U, Bojja S, Raju DSB, Kk R, Gopal PSS. Invasive mold infections among transplant recipients: a single-center observational study. Journal de Mycologie Médicale / Journal of Medical Mycology. 2026;36(2):101629. DOI: 10.1016/j.mycmed.2026.101629
- Hollomon JM, Dahlstrom KM. CRISPR-Cas9-mediated targeted gene deletion in Aspergillus calidoustus, a non-model environmental mold. Microbiology Spectrum. 2026;14(6):e03899-25. PMID: 42112836
- Ing SK, Lee YH, Tan YY, Aziz MBA, Chang AKW. Primary traumatic cutaneous aspergillosis of the hand caused by Aspergillus terreus following a mould-contaminated penetrating injury. Medical Mycology Case Reports. 2026;52:100798. PMID: 42237979
Article information
Prepared for: aspergillosis.org professionals section
Intended audience: healthcare professionals and researchers
Article type: monthly professional literature update
Coverage period: May 2026
Last reviewed: June 2026
The Power of Keeping a Health Diary When You Have Aspergillosis
Last reviewed: June 2026
Audience: People living with aspergillosis, families and carers
Key points
- A health diary can help you understand symptoms, triggers and changes over time.
- It can be especially useful if you experience fatigue, brain fog or memory problems.
- It can make clinic appointments more focused and productive.
- A diary may show progress that is hard to notice day to day.
- The best diary is simple, quick and realistic to keep using.
Contents
- Why keep a health diary?
- How it can help with aspergillosis
- Brain fog and memory
- Spotting patterns and triggers
- Using your diary at appointments
- The psychological benefit
- Simple diary template
- Common questions
- When to seek medical advice
Why keep a health diary?
Living with aspergillosis often means symptoms change from day to day. Some days may be manageable. Others may involve more coughing, breathlessness, fatigue, sinus symptoms, poor sleep or medication side effects.
Because these changes can happen gradually, it can be difficult to remember exactly when symptoms started, whether they are getting better or worse, or what might have triggered them.
A health diary gives you a simple record of what is happening over time. It can help you, your family and your healthcare team see patterns that may not be obvious from memory alone.
How a diary can help with aspergillosis
People with aspergillosis may find it useful to record:
- Cough
- Breathlessness
- Fatigue
- Sputum or phlegm
- Wheeze
- Sinus symptoms
- Sleep quality
- Exercise or walking distance
- Mood and wellbeing
- Medication changes
- Possible side effects
You may also want to note possible triggers, such as damp or mould exposure, pollen, dusty environments, changes in weather, respiratory infections, stress, travel or changes in medication.
Brain fog and memory
Many people with long-term lung conditions describe episodes of brain fog. This may feel like forgetfulness, poor concentration, difficulty finding words, feeling mentally slower than usual, or feeling as though your head is “empty”.
Brain fog can have many possible causes, including fatigue, poor sleep, infection, inflammation, stress, anxiety, pain, medication side effects, low oxygen levels or other health problems.
A diary acts as an external memory. Instead of trying to remember when something changed, you can look back and see what was happening at the time.
Spotting patterns and triggers
| What you record | What it may help show |
|---|---|
| Symptoms | Whether cough, breathlessness or fatigue are improving or worsening |
| Sleep | Whether poor sleep is linked to worse symptoms |
| Exercise | What level of activity is manageable |
| Weather | Whether heat, humidity, cold air or storms affect symptoms |
| Environment | Possible links with damp, mould, dust or pollen |
| Medication | Possible benefits, side effects or changes during dose reduction |
| Infections | Early warning signs or repeated patterns |
Using your diary at appointments
Healthcare professionals may ask questions such as:
- When did your symptoms start?
- Are they getting better or worse?
- Have you noticed any triggers?
- Have you changed any medication recently?
- How far can you walk now compared with before?
- Have you had any infections or courses of antibiotics?
These questions are not always easy to answer from memory, especially when you are tired or anxious. A diary can help you give clearer, more accurate information.
You may find it useful to bring a short summary to your appointment, such as:
- Three things that have improved
- Three things that have worsened
- Any medication changes
- Your main questions for the appointment
Sometimes the diary tells a different story
When you have had a difficult few days, it can feel as though nothing is improving. A diary may show that the wider picture is more encouraging.
For example, you may feel:
“Nothing has changed.”
But your diary may show:
- You are walking further than three months ago
- You are sleeping better
- You have had fewer chest infections
- You are coughing less at night
- You are doing more social activities
Equally, a diary can show gradual deterioration that might otherwise be missed. Both types of information can be useful.
The psychological benefit
Chronic illness can feel unpredictable. A diary can help restore a sense of control by changing the question from:
“Why do I feel awful?”
to:
“What changed recently?”
This can reduce uncertainty and help you feel more involved in your care.
A diary can also become a record of resilience. It may include difficult days, but it can also capture walks completed, holidays taken, family events attended, personal goals reached and challenges overcome.
Keep it simple
Many people stop keeping a diary because they try to record too much. A simple diary is usually more useful than a complicated one.
A daily entry might take less than two minutes and include:
- Symptoms, scored from 0 to 10
- Energy level, scored from 0 to 10
- Sleep quality
- Exercise or activity
- Medication changes
- Anything unusual
Consistency matters more than detail.
Paper, phone or app?
There is no single correct way to keep a diary. You could use:
- A notebook
- A printed diary sheet
- A phone notes app
- A calendar
- Voice notes
- A spreadsheet
- A symptom tracking app
- A fitness tracker or smartwatch
The best diary is the one you will actually use.
Simple diary template
Daily health diary
Date: __________________________
Symptoms, 0–10
Cough: ______
Breathlessness: ______
Fatigue: ______
Sinus symptoms: ______
Overall wellbeing: ______
Sleep
Hours slept: ______
Sleep quality, 0–10: ______
Activity
Exercise or activity today:
__________________________________________________
Medication
Any medication changes or side effects?
__________________________________________________
Notes
Anything unusual today?
__________________________________________________
__________________________________________________
Daily Diary - PDF downloadable
Common questions
Do I need to write every day?
No. Some people write daily. Others only record changes, flare-ups, medication changes or important events.
What if I forget for a few days?
That is very common. Simply restart when you remember. A diary does not have to be perfect to be useful.
Should I record test results?
You can if you find it helpful. Some people record blood results, oxygen saturations, lung function, weight, clinic letters or medication levels. Do not worry if this feels too much. A simple symptom diary is still useful.
Can a diary replace medical advice?
No. A diary is a tool to support conversations with your healthcare team. It should not be used to diagnose or treat symptoms without medical advice.
When to seek medical advice
Seek medical advice promptly if you experience:
- Sudden or significant worsening of breathlessness
- Coughing up large amounts of blood
- Persistent fever
- Severe chest pain
- New confusion or rapidly worsening brain fog
- Weakness, speech problems, facial drooping or visual changes
- Symptoms that are worsening quickly or feel unusual for you
If you are unsure, contact your healthcare team, NHS 111, your GP, or emergency services depending on severity.
Further information
Do You Carry Your Aspergillosis Information With You?
New NHS Plans Could Help in Future – But What About Today?
The UK government is currently debating plans for a new NHS “single patient record” system. The aim is to allow authorised healthcare professionals to access important information from GP surgeries, hospitals, community services and other parts of the NHS more easily.
If implemented successfully, this could reduce the need for patients to repeatedly explain their medical history and could help emergency departments, ambulance crews and other healthcare professionals see important information such as diagnoses, medications, allergies and previous treatment.
For people living with aspergillosis and other long-term respiratory conditions, this could be especially valuable. However, these changes will take time to develop and introduce. For now, patients remain one of the most important links between different parts of the healthcare system.
Why This Matters for Aspergillosis Patients
Many people with aspergillosis receive care from several different services, including:
- General Practitioners (GPs)
- Local respiratory teams
- Specialist nurses
- Hospital clinics
- Emergency departments
- Pharmacists
- Community healthcare teams
- Specialist centres such as the National Aspergillosis Centre
Healthcare records are not always immediately available to every professional involved in your care. This means there may be times when you need to explain:
- What type of aspergillosis you have
- Which medications you take
- Any important allergies or serious drug reactions
- Whether you have adrenal insufficiency or take long-term steroids
- Who your specialist team is
- What previous treatments you have received
Having this information readily available can save time and may help healthcare professionals make decisions more quickly and safely.
What Information Should You Carry?
You do not need to carry your entire medical record. A simple one-page health summary is usually enough.
1. Your Diagnosis
List your main diagnoses clearly. Examples include:
- Allergic Bronchopulmonary Aspergillosis (ABPA)
- Chronic Pulmonary Aspergillosis (CPA)
- Severe Asthma with Fungal Sensitisation (SAFS)
- Aspergillus Bronchitis
- Bronchiectasis
- Severe Asthma
- Chronic Obstructive Pulmonary Disease (COPD)
2. Your Current Medications
Include all current treatments, particularly:
- Antifungal medications, such as itraconazole, voriconazole, posaconazole or isavuconazole
- Steroid tablets
- Hydrocortisone replacement therapy
- Biologic therapies
- Inhalers
- Oxygen therapy
- Antibiotics you are currently taking
Try to keep this list up to date.
3. Drug Allergies and Serious Reactions
This is one of the most important sections. Include any known allergies or serious reactions, for example:
- Penicillin allergy
- Prednisolone allergy
- Previous severe drug reactions
- Medicines you have been told to avoid
4. Steroid or Adrenal Information
If you have adrenal insufficiency or are taking long-term steroid treatment, make this very clear.
I have adrenal insufficiency and may require emergency steroid treatment if seriously unwell.
Many patients already carry a steroid emergency card. If you have been advised to carry one, continue to carry it at all times.
5. Specialist Contact Information
Include:
- Consultant name
- Hospital or specialist centre
- Clinic or specialist nurse contact details, if available
6. Emergency Contact
Include:
- Name
- Relationship
- Telephone number
An Important Extra Note for Aspergillosis Patients
Many antifungal medications interact with other medicines. If you take itraconazole, voriconazole, posaconazole or isavuconazole, consider including the following statement on your health summary:
I take an azole antifungal medication. Please check for potential drug interactions before prescribing new medicines.
This simple statement may help avoid medication-related problems.
If You Are a National Aspergillosis Centre Patient: Using myMFT
If you are a patient of the National Aspergillosis Centre (NAC), you may already have access to some of your hospital information through the myMFT patient portal.
myMFT is the patient portal used by Manchester University NHS Foundation Trust (MFT), which includes Wythenshawe Hospital and the National Aspergillosis Centre.
Depending on the services you use, myMFT may allow you to:
- View MFT appointment details
- Access clinic letters
- Keep track of important test results, letters and health information
- Attend online video consultations
- Use proxy access to help manage a family member’s healthcare, with consent
Many patients find it useful to keep copies of important clinic letters on their phone or tablet. This can be particularly helpful if you attend another hospital, visit your GP, travel away from home or need emergency treatment.
myMFT does not replace a future NHS-wide patient record, but it can provide access to important information that may help you and your healthcare professionals manage your care more effectively.
Find out more about myMFT on the Manchester University NHS Foundation Trust website.
For Patients Not Under the National Aspergillosis Centre
If you are not an NAC or MFT patient, your local hospital may have its own patient portal or online record system. Ask your hospital clinic, respiratory team or GP surgery whether you can access clinic letters, appointment information or test results online.
You may also be able to use the NHS App to manage parts of your healthcare, depending on your GP surgery and local NHS services.
Find out more about the NHS App.
You may also find it useful to know your NHS number. You do not need to know your NHS number to receive NHS care, but it can be helpful when contacting services or completing forms.
Where Should You Keep Your Information?
Many patients choose to:
- Save a copy on their mobile phone
- Keep a printed copy in their wallet or handbag
- Store it alongside their steroid emergency card
- Keep a copy with travel documents
- Share a copy with family members or carers
- Keep copies of important clinic letters on their phone or tablet
The best system is the one that is easy to access when needed.
Printable options (Word documents):
Looking Ahead
The proposed NHS single patient record could eventually make it easier for healthcare professionals to access important information quickly and safely.
For patients with rare conditions such as aspergillosis, that could improve continuity of care, reduce delays and reduce the need to repeatedly explain complex medical histories.
Until then, carrying a simple summary of your condition remains one of the easiest and most effective ways to help healthcare professionals understand your health needs and provide appropriate care.
Key Points
- Carry a simple one-page health summary.
- Include diagnoses, medications, allergies and specialist contacts.
- Clearly state if you have adrenal insufficiency or take long-term steroids.
- Mention azole antifungal treatment and potential drug interactions.
- National Aspergillosis Centre patients may be able to access clinic information through myMFT.
- Patients outside MFT should ask whether their own hospital has a patient portal.
- Keep important information on your phone and consider carrying a printed copy.
- A future NHS single patient record may improve information sharing, but patients remain an important source of information today.
Common Questions
Do I need to carry all my clinic letters?
No. A concise one-page summary is usually more useful in an emergency. However, keeping copies of important clinic letters on your phone can be helpful.
What if I am treated at more than one hospital?
This is one of the main reasons to carry a health summary. Different healthcare providers may not always have immediate access to the same information.
Is this only useful in emergencies?
No. It can also help during GP appointments, outpatient visits, travel, planned hospital admissions and when seeing healthcare professionals unfamiliar with aspergillosis.
What if I am a National Aspergillosis Centre patient?
Consider registering for myMFT and keeping important clinic letters available on your phone or tablet for easy access.
What if I am not an NAC patient?
Ask your own hospital or respiratory clinic whether they offer a patient portal. You can also check what information is available through the NHS App.
When to Seek Medical Advice
Seek urgent medical advice if you experience:
- Significant worsening of breathlessness
- Chest pain
- Coughing up significant amounts of blood
- Symptoms of adrenal crisis if you have adrenal insufficiency
- Severe allergic reactions to medications
- Rapid deterioration in your respiratory symptoms
If you need emergency help, call 999. For urgent medical advice in the UK, use NHS 111.
Useful Links
- myMFT patient portal – Manchester University NHS Foundation Trust
- NHS App
- Find your NHS number
- Aspergillosis information and support
Frequently Asked Questions
What information should an aspergillosis patient carry in an emergency?
Patients should consider carrying a summary of their diagnosis, medications, allergies, steroid or adrenal information, specialist contacts and emergency contact details.
Should people with aspergillosis carry a medication list?
Yes. Many aspergillosis patients take antifungal medicines, steroids, biologic therapies and inhalers. An up-to-date medication list can help avoid prescribing errors and drug interactions.
What is myMFT?
myMFT is the patient portal used by Manchester University NHS Foundation Trust. It allows eligible patients to access appointments, clinic letters, test results and other healthcare information.
Can aspergillosis patients access their records online?
Some patients can access records through services such as myMFT, local hospital portals or the NHS App, depending on where they receive care.
What is the NHS single patient record?
The proposed NHS single patient record aims to improve information sharing between healthcare providers so patients do not need to repeatedly explain their medical history.
Author: National Aspergillosis Centre Patient Support Team
Reviewed by: National Aspergillosis Centre
Last reviewed: June 2026
Important: This article is intended for information only and should not replace advice from your healthcare team.
What the UK Infection Workforce Report Means for Aspergillosis Patients and Specialists
Summary: A major new UK infection-specialist workforce report recognises fungal disease expertise as an essential part of modern healthcare. The report has important implications for aspergillosis diagnosis, specialist services, digital care, antifungal stewardship and future workforce planning.
Key points
- Medical mycology is now recognised as part of essential UK infection infrastructure.
- Rising immunosuppression and chronic lung disease are increasing demand for aspergillosis expertise.
- The report supports networked specialist care, closely matching the National Aspergillosis Centre model.
- Advanced fungal diagnostics and specialist interpretation are increasingly important.
- Digital and community-based care could improve access for patients living far from specialist centres.
- Antifungal stewardship and resistance monitoring are likely to become much more prominent.
Why was this report produced?
This report was produced in 2026 by a coalition of the UK’s leading infection societies, including organisations representing infectious diseases physicians, microbiologists, virologists, infection prevention specialists, pharmacists, laboratory scientists and medical mycologists.
It reflects growing concern that the UK infection-specialist workforce is under increasing strain at a time when infectious diseases are becoming more complex, more resistant to treatment and more internationally connected.
The report was produced in response to several major pressures affecting the NHS and wider healthcare system:
- the long-term impact of the COVID-19 pandemic;
- rising antimicrobial resistance (AMR);
- an ageing population with more chronic disease;
- increasing use of immunosuppressive medicines, biologics and transplantation;
- workforce shortages in infection specialties;
- concerns about future pandemics and emerging infections;
- growing demand for complex diagnostics and specialist infection advice;
- the NHS shift toward community and digitally enabled care.
The report also aligns closely with the NHS 10-Year Plan and wider UK health-security planning. It repeatedly refers to the need for three major shifts in healthcare delivery:
- moving care from hospital to community;
- shifting from reacting to illness toward prevention;
- accelerating digital and data-driven healthcare systems.
Importantly for aspergillosis and fungal disease, the report recognises that modern infection medicine now extends far beyond traditional bacterial infections. Infection specialists are increasingly dealing with:
- complex fungal infections;
- drug-resistant organisms;
- infections linked to immunosuppression;
- global travel and climate change;
- high-risk vulnerable patients;
- and emerging pathogens.
The report can therefore be seen as both:
- a warning that infection services are under significant pressure and risk workforce shortages; and
- a strategic argument for greater investment in specialist infection expertise, diagnostics, digital infrastructure and networked care.
For aspergillosis specialists, one of the most important aspects is that medical mycology and fungal diagnostics are now being recognised as part of essential national infection infrastructure rather than as peripheral specialist services.
In many ways, the report reflects lessons learned during the COVID-19 pandemic. During COVID, the NHS saw how rapidly infection services, diagnostics, surveillance systems and specialist expertise became critical to national resilience. The experience also highlighted how vulnerable immunocompromised patients are to opportunistic infections, including fungal disease such as COVID-associated pulmonary aspergillosis (CAPA).
The report therefore represents a broader move toward building a more resilient, better-connected and more prevention-focused infection system for the future.
1. Fungal disease expertise is recognised as core infection infrastructure
One of the most significant implications is that the report explicitly includes mycologists and fungal diagnostics specialists within the UK infection-specialist workforce.
This matters because fungal disease services have often been under-recognised compared with bacterial and viral infection services. For aspergillosis specialists, the report strengthens the argument that medical mycology is not a niche extra, but a necessary part of safe, modern infection care.
For patients, this recognition may help support better access to specialist fungal expertise, particularly for complex conditions such as chronic pulmonary aspergillosis (CPA), allergic bronchopulmonary aspergillosis (ABPA) and invasive aspergillosis.
2. Aspergillosis is likely to become more important
The report highlights several pressures on infection services, including ageing populations, multi-morbidity and increasing use of immunosuppressive treatments. These are also major risk factors for Aspergillus-related disease.
This means clinicians may see increasing numbers of patients with:
- chronic pulmonary aspergillosis (CPA);
- invasive aspergillosis;
- Aspergillus disease in bronchiectasis;
- Aspergillus complications in people receiving biologics, chemotherapy or transplant medicines;
- azole-resistant Aspergillus infections.
For patients, this could eventually mean better awareness and diagnosis. However, unless the specialist workforce grows, increased recognition may also place more pressure on already stretched fungal services.
3. The report supports networked specialist care
The report strongly supports regional and national specialist networks, shared expertise, multidisciplinary team working and digital advice models.
This is highly relevant to aspergillosis. Many patients are looked after locally by respiratory, microbiology or infectious diseases teams, but need input from specialist fungal centres for diagnosis, treatment decisions and monitoring.
This supports a model where local teams remain involved, but have rapid access to national fungal expertise when needed.
4. Diagnostics are central to better aspergillosis care
Aspergillosis is often difficult to diagnose. Test results need careful interpretation because Aspergillus can represent colonisation, allergy, chronic infection or invasive disease depending on the clinical context.
The report’s focus on rapid diagnostics, molecular testing, genomics, digital laboratory systems and expert interpretation is therefore highly relevant.
For aspergillosis, improved diagnostic pathways could include better access to:
- Aspergillus immunoglobulin G (IgG);
- Aspergillus immunoglobulin E (IgE);
- galactomannan testing;
- fungal polymerase chain reaction (PCR);
- azole resistance testing;
- fungal culture and sequencing;
- specialist radiology review.
For patients, this could mean fewer missed diagnoses, shorter diagnostic delays and more personalised treatment.
5. Community and digital care could help patients
The report supports moving appropriate care closer to home, using outpatient antimicrobial therapy, virtual services and digitally enabled community pathways.
For people with aspergillosis, this could be very beneficial. Many patients have long-term breathlessness, fatigue and mobility limitations, and may live far from specialist centres.
Potential benefits include:
- fewer long-distance hospital visits;
- remote monitoring of symptoms and test results;
- shared-care arrangements with local hospitals;
- virtual multidisciplinary team review;
- faster specialist advice for local clinicians.
However, fungal disease management is complex. Community pathways must still include specialist oversight because antifungal treatment can involve drug interactions, liver toxicity, therapeutic drug monitoring, adrenal suppression and resistance issues.
6. Antifungal stewardship should become more prominent
The report focuses heavily on antimicrobial stewardship. Although much of this is framed around antibiotics, the same principles apply to antifungal medicines.
For aspergillosis care, antifungal stewardship means using the right antifungal, at the right dose, for the right duration, with careful monitoring.
This is especially important because of:
- azole resistance in Aspergillus fumigatus;
- long courses of antifungal treatment;
- drug interactions with steroids, anticoagulants, immunosuppressants and other medicines;
- the need for therapeutic drug monitoring;
- side effects affecting the liver, skin, nerves or adrenal system.
For patients, better antifungal stewardship should mean safer and more effective treatment.
7. Fungal disease has a role in pandemic preparedness
The report includes mycology within pandemic preparedness planning. This is important because fungal complications can emerge during major respiratory outbreaks.
COVID-associated pulmonary aspergillosis (CAPA) showed that fungal disease can become highly relevant during pandemics, especially in intensive care and immunocompromised patients.
Future preparedness should therefore include fungal diagnostics, fungal surveillance, resistance monitoring and specialist mycology input.
8. Workforce expansion is essential
The report warns that the infection-specialist workforce is under pressure. This is particularly important for fungal disease because the UK has a limited number of specialist medical mycologists, fungal pharmacists, laboratory scientists and specialist nurses.
For aspergillosis services, workforce planning should include:
- more medical mycology training opportunities;
- more specialist fungal pharmacists;
- more fungal diagnostics scientists;
- more specialist nurses supporting long-term fungal disease care;
- protected time for multidisciplinary team meetings and advice services.
Without this, diagnostic delays and unequal access to specialist care may persist.
9. What this means for patients
For patients, the report supports several important messages:
- fungal disease expertise matters;
- specialist diagnosis and treatment are important;
- long-term fungal lung disease requires joined-up care;
- access to expert advice should not depend too heavily on postcode;
- digital and shared-care systems could reduce the need for repeated travel;
- patient education should be part of infection service planning.
The report may also be useful for patient advocacy because it provides national-level support for strengthening infection services, including fungal infection expertise.
10. What is still missing?
Although the report is very helpful, aspergillosis itself is not discussed in detail. Areas that would benefit from stronger future emphasis include:
- chronic pulmonary aspergillosis (CPA);
- allergic bronchopulmonary aspergillosis (ABPA);
- severe asthma with fungal sensitisation (SAFS);
- Aspergillus bronchitis;
- azole-resistant Aspergillus;
- environmental mould exposure and health;
- long-term patient support and rehabilitation.
This creates an opportunity for aspergillosis specialists, patient groups and charities to build on the report and make the case for more visible fungal disease planning.
Conclusion
This report is a positive development for aspergillosis. It recognises that fungal disease expertise is part of the UK’s essential infection workforce and supports many of the changes aspergillosis patients need: better diagnostics, stronger specialist networks, digital care, community support, workforce expansion and safer antimicrobial use.
The key challenge is ensuring that fungal disease does not remain only briefly mentioned within broader infection policy. Aspergillosis specialists and patient advocates can use this report to argue that fungal infection services need sustained investment, national planning and equitable access across the UK.
Why Antifungal Drug Interactions Matter — and How AntifungalInteractions.org Can Help
Key points
- Antifungal medicines used in aspergillosis can interact with many common medicines and supplements.
- Some interactions are mild, while others can significantly affect drug levels or side effects.
- Interactions may involve steroids, inhalers, antibiotics, heart medicines, acid suppressants and herbal supplements.
- Patients should always tell healthcare teams about all medicines, vitamins and supplements they take.
- AntifungalInteractions.org is a specialist resource designed to help healthcare professionals and patients understand potential antifungal interactions.
Why do antifungal interactions matter so much?
The antifungal medicines used to treat aspergillosis are powerful and highly specialised drugs. They are extremely important in controlling fungal disease, but many also affect the way the body processes other medicines.
This is particularly true for azole antifungals such as:
- itraconazole,
- voriconazole,
- posaconazole,
- isavuconazole.
These medicines are processed through enzyme systems in the liver, especially the cytochrome P450 system. Unfortunately, many other medicines also use these same pathways.
This means antifungals can sometimes:
- increase levels of other medicines,
- reduce levels of other medicines,
- increase side effects,
- affect liver function,
- change how well treatments work.
Because aspergillosis patients often take several medicines at the same time, interactions become particularly important.
Common medicines that may interact with antifungals
Not every interaction is dangerous, and many medicines can still be used safely with careful monitoring. However, some combinations require dose adjustments or additional caution.
Steroids and inhalers
Many patients with allergic bronchopulmonary aspergillosis (ABPA), severe asthma or bronchiectasis take steroid medicines.
Interactions can occur with:
- prednisolone,
- methylprednisolone,
- inhaled steroids such as fluticasone or budesonide.
Azole antifungals can increase steroid exposure, potentially increasing the risk of side effects such as:
- weight gain,
- skin thinning,
- high blood sugar,
- adrenal suppression,
- mood changes.
Heart medicines
Some antifungals can affect heart rhythm or interact with medicines used for:
- high blood pressure,
- irregular heartbeat,
- blood thinning,
- cholesterol management.
This is one reason doctors and pharmacists carefully review medication lists before starting antifungal treatment.
Acid suppressants
Medicines used for acid reflux or stomach protection may affect how well some antifungals are absorbed.
This includes:
- omeprazole,
- lansoprazole,
- esomeprazole,
- antacid preparations.
In some cases, antifungal levels may become too low to work effectively.
Antibiotics and other anti-infective medicines
Some antibiotics and antifungals can interact in ways that increase side effects or affect the electrical activity of the heart.
This is particularly important in people already taking multiple medicines.
Supplements and herbal remedies
Patients are often surprised that supplements may also interact with antifungals.
Potential concerns include:
- CBD oil or cannabis products,
- St John’s Wort,
- high-dose vitamins,
- herbal sleep remedies,
- sports supplements.
“Natural” products can still affect liver enzyme systems and may alter medicine levels.
What is AntifungalInteractions.org?
AntifungalInteractions.org is a specialist online interaction checker designed specifically for antifungal medicines.
The site was developed to help healthcare professionals identify and manage potential interactions involving antifungal drugs.
It is widely used internationally and is regularly updated by specialist pharmacy experts.
Why is it useful?
General drug references do not always provide detailed fungal-specific interaction guidance.
AntifungalInteractions.org focuses specifically on antifungal medicines and often provides:
- more detailed interaction information,
- clearer explanations of risks,
- practical management advice,
- colour-coded interaction severity ratings.
This can help patients better understand why clinicians sometimes adjust medicines, order blood tests or recommend monitoring.
Can patients use the website themselves?
Yes — many patients find it useful for understanding their treatment better.
However, it is important not to interpret interaction checkers without context.
An interaction warning does not automatically mean:
- a medicine combination is unsafe,
- treatment must stop,
- harm will definitely occur.
Many interactions can be safely managed by:
- dose adjustments,
- blood test monitoring,
- timing changes,
- careful clinical supervision.
What should patients do?
Patients should try to keep an up-to-date list of:
- prescription medicines,
- inhalers,
- vitamins,
- supplements,
- CBD or cannabis products,
- over-the-counter medicines.
It is particularly important to mention supplements or herbal remedies because these are easily overlooked during clinic visits.
Do not stop medicines without advice
One of the most important messages is that patients should not stop antifungal medicines or other prescribed treatments based only on an online interaction checker.
Antifungal treatment decisions are often carefully balanced against:
- severity of fungal disease,
- lung function,
- other illnesses,
- alternative treatment options.
Healthcare teams can often safely manage interactions once they are aware of them.
The bottom line
Drug interactions are an important part of antifungal treatment, particularly for people living with aspergillosis who may already take several medicines.
AntifungalInteractions.org is an excellent specialist resource that can help patients and healthcare professionals better understand these interactions.
However, online interaction checkers should support discussions with healthcare professionals rather than replace them.
Useful link
Visit AntifungalInteractions.org
BNF to check any other medication interactions
Author and review information
Prepared as general educational information for people affected by aspergillosis and related lung conditions.
This article does not replace personalised medical advice.
Last reviewed: May 2026
Aspergillosis Trust: Supporting People Affected by Aspergillosis
Raising Awareness of Aspergillosis
One of the Trust’s most important roles is increasing awareness of aspergillosis among:
- Patients and carers
- Healthcare professionals
- Researchers
- Policy makers
- The wider public
This includes helping people better understand conditions such as:
- ABPA (Allergic Bronchopulmonary Aspergillosis)
- CPA (Chronic Pulmonary Aspergillosis)
- Aspergilloma
- Invasive aspergillosis
- Severe asthma with fungal sensitisation (SAFS)
By promoting education and awareness, the Trust helps support earlier recognition and diagnosis of fungal disease.
Patient Support and Community
Living with aspergillosis can be physically and emotionally challenging. Many patients experience fatigue, breathlessness, anxiety, long treatment journeys and uncertainty about the future.
The Aspergillosis Trust helps provide:
- Patient-focused information
- Community support
- Awareness campaigns
- Educational events
- Opportunities for patient involvement
The charity also helps patients connect with others who understand the realities of living with chronic fungal disease, reducing feelings of isolation and helping people feel supported.
Supporting Research and Advocacy
The Trust actively supports research into aspergillosis and fungal disease, while also advocating for better services and greater recognition of fungal infections within healthcare systems.
This includes:
- Supporting patient participation in research
- Raising awareness of diagnostic delays
- Promoting better understanding of chronic fungal disease
- Working alongside clinicians, researchers and respiratory organisations
- Supporting international awareness activities
The organisation has collaborated with specialist centres, patient groups and international respiratory organisations to strengthen awareness and improve education around aspergillosis.
Working Together with the Wider Respiratory Community
The Aspergillosis Trust is part of a growing international effort to improve fungal disease awareness and patient support.
This includes collaboration and engagement with organisations such as:
- European Lung Foundation (ELF)
- European Respiratory Society (ERS)
- Specialist respiratory and infectious disease centres
- Patient advocacy organisations
- Researchers working in fungal disease and respiratory medicine
These partnerships help ensure that the experiences of people living with aspergillosis are represented within wider respiratory healthcare discussions.
Differences Between the Aspergillosis Trust and National Aspergillosis Centre Patient Support
The Aspergillosis Trust and the National Aspergillosis Centre (NAC) both play extremely important roles in supporting people affected by aspergillosis, but they are different types of organisations with different responsibilities and strengths. In many ways, they complement one another.
The National Aspergillosis Centre (NAC)
The National Aspergillosis Centre is an NHS Highly Specialised Service based at Wythenshawe Hospital in Manchester. It is a specialist clinical centre commissioned to diagnose, treat and manage complex aspergillosis cases — particularly Chronic Pulmonary Aspergillosis (CPA).
The NAC provides:
- Specialist medical diagnosis and treatment
- Advice and Guidance to clinicians across the UK
- Monitoring of antifungal therapy
- Clinical investigations and testing
- Research programmes
- Patient education resources
- NHS-supported patient support meetings and moderated support groups
The NAC CARES team (Community, Awareness, Research, Education and Support) runs:
- The patient information website aspergillosis.org
- Weekly Microsoft Teams meetings
- Educational webinars
- Facebook and online support communities
- Research participation activities
- World Aspergillosis Day educational events
Because the NAC is part of the NHS, its information tends to be strongly clinically focused and evidence-based, with close involvement from specialist doctors, nurses, pharmacists and researchers.
The Aspergillosis Trust
The Aspergillosis Trust is a patient-led charity rather than a clinical NHS service. It was created by patients and carers affected by aspergillosis to improve awareness, advocacy and community support.
The Trust focuses particularly on:
- Raising public and professional awareness
- Patient advocacy
- Representing the patient voice
- Community support
- Campaigning for earlier diagnosis and better recognition
- Helping reduce isolation among patients and carers
Because it is patient-led, the Trust brings a particularly strong lived-experience perspective. Many people find this valuable because the charity is run by people who directly understand the emotional, practical and social impact of living with aspergillosis.
A Simple Way to Think About the Difference
| NAC Patient Support | Aspergillosis Trust |
|---|---|
| NHS specialist clinical service | Independent patient charity |
| Led by healthcare professionals and NHS staff | Led by patients and carers |
| Focus on diagnosis, treatment, education and research | Focus on advocacy, awareness and peer support |
| Provides specialist clinical expertise | Provides lived-experience support |
| Closely linked to NHS care pathways | Represents the broader patient community |
| Produces medically reviewed educational resources | Amplifies the patient voice and patient needs |
How They Work Together
Importantly, these organisations are not competitors. They often collaborate closely on awareness campaigns, patient education, World Aspergillosis Day activities, webinars, conferences and research engagement.
Many patients benefit from engaging with both:
- The NAC for specialist medical expertise and educational resources
- The Aspergillosis Trust for advocacy, lived experience and broader patient community support
Together, they help create a stronger support network for people living with aspergillosis.
Why Patient Participation Matters
Patient experience is one of the most valuable resources in improving understanding of aspergillosis.
People living with aspergillosis often understand challenges that are not always visible in clinical appointments, including:
- Diagnostic delays
- Fatigue and fluctuating symptoms
- Treatment side effects
- Emotional impact
- Difficulties accessing information and support
By sharing experiences and becoming involved in awareness and advocacy activities, patients and carers can help improve understanding and support for others.
Participation does not need to be overwhelming. It can include:
- Sharing experiences confidentially
- Joining online discussions or support groups
- Supporting awareness campaigns
- Attending educational events
- Helping improve patient information
- Participating in surveys or research projects
Even small contributions can help improve awareness and care for future patients.
How to Learn More or Get Involved
- Aspergillosis Trust Website
- European Lung Foundation Aspergillosis Pages
- National Aspergillosis Centre Resources
The Aspergillosis Trust demonstrates the importance of patient-led advocacy in rare and under-recognised diseases. Through education, awareness and community support, the charity helps ensure that people living with aspergillosis are better informed, better supported and increasingly heard.
European Lung Foundation (ELF): Giving Patients a Voice in Respiratory Health
What makes ELF particularly valuable is that it is genuinely patient-led. Patients and carers are not simply consulted occasionally; they actively help shape educational resources, awareness campaigns, research priorities and clinical guideline discussions.
ELF and Aspergillosis
One particularly important area of ELF’s work is its commitment to supporting people affected by aspergillosis and other fungal lung diseases.
The ELF Aspergillosis Information Hub provides accessible, reliable information about:
- ABPA (Allergic Bronchopulmonary Aspergillosis)
- CPA (Chronic Pulmonary Aspergillosis)
- Aspergilloma
- Invasive aspergillosis
- Symptoms and diagnosis
- Treatment approaches
- Living with long-term fungal disease
- Patient experiences and support
The ELF Aspergillosis Patient Advisory Group
ELF has also established a dedicated Aspergillosis Patient Advisory Group, bringing together people from across Europe with direct lived experience of aspergillosis.
The group works alongside clinicians and researchers to improve awareness, encourage earlier diagnosis, develop patient education, influence research priorities and support better long-term care.
Why Patient Participation Matters
Aspergillosis is still under-recognised in many countries, and many patients experience long delays before receiving a diagnosis. Patient involvement can help change this.
By sharing experiences, joining discussions and supporting awareness activities, patients and carers can help improve understanding of fungal lung disease, strengthen educational materials, support newly diagnosed patients and raise awareness among healthcare professionals and the public.
Not everyone needs to become a public speaker or campaigner. Participation can include joining online meetings, completing surveys, sharing experiences confidentially, reviewing patient information, supporting awareness campaigns online or helping identify what matters most to patients.
Ways to Get Involved
- Visit the ELF Aspergillosis Information Hub
- Learn about the ELF Aspergillosis Patient Advisory Group
- Explore the ELF Patient Organisation Network
- Support the Healthy Lungs for Life campaign
- Watch ELF videos on YouTube
A Shared Effort
ELF demonstrates that respiratory healthcare works best when patients, carers, clinicians and researchers work together as partners.
For people affected by aspergillosis, involvement in organisations like ELF can help transform personal experience into something that improves understanding, care and support for others across Europe and beyond.
Every patient story, question, survey response and conversation contributes to building greater awareness of aspergillosis and improving the future of care.
Breathe deeply at the Asthma + Lung UK Garden
Asthma + Lung UK’s “Breathing Space Garden” at the RHS Chelsea Flower Show is a beautiful reminder of how much our surroundings can affect our lungs, our wellbeing, and our ability to pause and breathe.
Designed by award-winning garden designer Angus Thompson, the garden is inspired by the Japanese idea of yohaku no bi — “the beauty of empty space”. It brings together calming woodland planting, flowing water, accessible design, and quiet areas for rest, reflection, yoga, and tai chi.
The planting has been chosen with lung health in mind, using low-allergen species, soft textures, resilient trees, and calming green spaces that offer a gentler environment for people with sensitive lungs.
For people living with aspergillosis, asthma, chronic obstructive pulmonary disease (COPD), bronchiectasis, and other lung conditions, this message is especially powerful. Clean air, reduced stress, accessible outdoor spaces, and thoughtful planting can all help people feel more comfortable and supported.
Importantly, the garden will continue to make a difference after Chelsea. It is due to be permanently relocated to the Breathing Space lung rehabilitation centre in Rotherham, where it will support people living with lung conditions for years to come.
RHS Chelsea Flower Show: 19–23 May 2026
Read more from Asthma + Lung UK
When Breathlessness Feels Severe — Even When Oxygen Levels Look “Normal”
Many people living with aspergillosis, severe asthma, bronchiectasis, or other chronic lung conditions describe a confusing and sometimes frightening experience:
“My oxygen saturations are normal, my peak flow is reasonable, there’s little wheeze, but I still feel like I’m drowning.”
This can be distressing for patients and frustrating for carers. Some people feel that because their oxygen levels or breathing tests appear “acceptable”, their symptoms are not fully understood.
Importantly, severe breathlessness can occur even when standard measurements such as oxygen saturations and peak flow readings appear relatively normal.
This does not mean the symptoms are imaginary or “all in the mind”. Breathlessness is complex and can have many different causes.
Why Breathlessness Is More Complicated Than Oxygen Levels
When doctors or nurses assess breathing problems, they often check:
- Oxygen saturation levels (sats)
- Peak flow readings
- Respiratory rate
- Presence of wheeze
- Chest sounds
These are all important. However, they do not always reflect how breathless a person feels.
Some people with chronic respiratory illness may have:
- Normal oxygen saturations
- Reasonable peak flow readings
- Little visible wheeze
- Minimal mucus production
…yet still experience intense sensations of:
- air hunger
- tight chest
- difficulty taking a satisfying breath
- feeling unable to “fill the lungs”
- panic associated with breathing
- extreme fatigue from breathing effort
What Can Cause This?
Breathlessness in aspergillosis and chronic lung disease is often caused by several factors happening together.
Inflammation and Airway Sensitivity
Conditions such as Allergic Bronchopulmonary Aspergillosis (ABPA), Severe Asthma with Fungal Sensitisation (SAFS), bronchiectasis, and Chronic Pulmonary Aspergillosis (CPA) can all cause inflamed and hypersensitive airways.
The lungs may feel irritated or tight even if oxygen exchange remains relatively preserved.
Small Airways Dysfunction
Some breathing problems occur in the smaller airways of the lungs and may not always show clearly on basic tests such as peak flow.
Patients can feel significant chest tightness or air trapping despite “good numbers”.
Muscle Fatigue
Breathing takes muscular effort. Chronic respiratory illness can place a long-term strain on the chest wall and breathing muscles, leading to exhaustion and increased awareness of breathing.
Mucus and Airflow Changes
Even relatively small amounts of mucus or airway narrowing can create sensations of chest heaviness or difficulty moving air.
Breathing Pattern Dysfunction (Dysfunctional Breathing)
This is increasingly recognised in people with chronic respiratory illness.
When breathing becomes difficult over months or years, people may unconsciously develop altered breathing patterns, including:
- rapid shallow breathing
- upper chest breathing
- frequent sighing
- over-breathing (hyperventilation)
- muscle tension around the chest and neck
This can worsen symptoms and create a vicious cycle where the sensation of breathlessness becomes amplified.
Symptoms may include:
- air hunger
- dizziness
- tingling
- tight chest
- panic sensations
- difficulty “switching off” breathing awareness
Importantly, this does not mean the illness is psychological or “not real”. Dysfunctional breathing can happen alongside genuine lung disease.
Why Inhalers Sometimes Seem to Help Less
Reliever inhalers such as salbutamol (Ventolin) are designed mainly to relax tightened airways.
If breathlessness is being driven partly by breathing pattern dysfunction, muscle fatigue, inflammation, hypersensitivity, or air trapping, inhalers may not always provide dramatic relief.
This can be confusing and upsetting for patients.
“But My Tests Are Normal…”
Many patients feel frustrated, frightened, or even dismissed when told that oxygen levels, peak flow readings, or chest examinations are “fine” despite severe breathlessness.
Normal oxygen saturations are reassuring in terms of immediate danger, but they do not always reflect the full experience of chronic respiratory illness.
Breathlessness is influenced by many factors including inflammation, airway sensitivity, breathing effort, muscle fatigue, anxiety associated with struggling to breathe, and altered breathing patterns.
Because of this, some people may feel profoundly breathless even when routine measurements appear relatively stable.
It can sometimes help to explain symptoms in practical, functional terms, such as:
- “I become breathless walking across the room.”
- “I recover much more slowly than usual.”
- “This feels much worse than my normal baseline.”
- “I feel exhausted by the effort of breathing.”
- “Breathing exercises seem to help settle things.”
These descriptions may help healthcare professionals understand how symptoms are affecting day-to-day life, rather than focusing only on oxygen levels or peak flow numbers.
Some patients also find it helpful to ask questions such as:
- Could breathing pattern dysfunction be contributing?
- Would respiratory physiotherapy help?
- Would pulmonary rehabilitation be appropriate?
- How should I judge when symptoms need urgent assessment?
Importantly, severe breathlessness should never simply be ignored. New, worsening, or unusual symptoms still require proper medical assessment.
At the same time, many people with chronic lung disease experience very real symptoms that are not always fully reflected by routine measurements alone.
Why Breathlessness Can Feel So Frightening
The sensation of breathlessness is created by the brain interpreting signals from the lungs, breathing muscles, chest wall, blood chemistry, and nervous system.
This means that the feeling of “not getting enough air” is not determined only by oxygen levels.
In chronic lung disease, several things can trigger the sensation of breathlessness, including:
- inflamed or sensitive airways
- extra effort needed to move air in and out
- air trapping in the lungs
- muscle fatigue
- rapid or shallow breathing
- stress hormones released during breathing distress
- heightened awareness of breathing sensations
When breathing becomes uncomfortable, the body naturally responds with anxiety and adrenaline. This is a protective survival response.
Unfortunately, this can sometimes create a cycle:
breathlessness → anxiety → faster breathing → more chest tightness → worse breathlessness
This does not mean symptoms are “psychological”. The physical sensation is real, but the body’s alarm systems can unintentionally amplify it.
What Can Help During an Episode of Breathlessness?
Different techniques help different people, and severe or rapidly worsening symptoms should always be medically assessed. However, some patients find the following approaches helpful during episodes of distressing breathlessness:
Slow the Breathing Rate
Trying to slow breathing gently can help reduce over-breathing and chest tightness.
Some people find it helpful to:
- breathe in gently through the nose
- breathe out slowly through pursed lips
- focus on making the out-breath longer than the in-breath
Use a Recovery Position
Sitting forward slightly with the arms supported on knees or a table can sometimes reduce the work of breathing.
Reduce Panic and “Air Hunger”
Trying to fight for bigger and bigger breaths can sometimes worsen symptoms.
Some patients find it more helpful to focus on:
- gentle breathing rhythm
- relaxing the shoulders and neck
- slowing breathing rather than deepening it
- focusing attention away from the chest where possible
Use Prescribed Treatments Appropriately
Follow the advice provided by your healthcare team regarding inhalers, nebulisers, airway clearance, or rescue medication.
If inhalers are not helping as expected, this should be discussed with a respiratory specialist rather than simply increasing use repeatedly.
Know Your “Usual” Pattern
Many patients find it useful to learn the difference between:
- their “usual” chronic breathlessness
- breathing pattern dysfunction or over-breathing episodes
- symptoms suggesting infection or acute deterioration
This can help patients feel more confident recognising when urgent medical assessment may be needed.
Can Breathing Retraining Help?
Some patients find breathing retraining exercises very helpful, especially when guided by:
- respiratory physiotherapists
- specialist breathing services
- pulmonary rehabilitation teams
- asthma nurse specialists
Breathing retraining may include:
- slowing breathing rate
- diaphragmatic (“belly”) breathing
- nasal breathing techniques
- recovery breathing positions
- relaxation techniques
- paced activity and pacing strategies
Some NHS respiratory teams recommend online breathing resources and guided exercises to help patients recognise and manage over-breathing patterns.
These approaches are usually intended to work alongside medical treatment — not instead of it.
Living With an “Invisible” Symptom
One of the hardest aspects of chronic breathlessness is that outward signs may not always match how severe symptoms feel internally.
Many patients report feeling dismissed when oxygen levels are normal or when tests appear “better than expected”.
The experience of breathlessness is real, even when routine measurements do not fully explain it.
This is one reason why specialist respiratory assessment can be important in complex conditions such as aspergillosis.
When to Seek Medical Help
You should seek urgent medical advice if breathlessness is:
- suddenly worsening
- associated with chest pain
- causing blue lips or fingertips
- associated with falling oxygen saturations
- accompanied by fever or signs of infection
- causing confusion or severe exhaustion
- significantly different from your usual symptoms
Even if previous episodes have been related to breathing pattern dysfunction, new or worsening symptoms should still be medically assessed.
Further Support
You may also find these resources helpful:
Last reviewed: May 2026
Produced by: National Aspergillosis Centre CARES Team / Aspergillosis Website