Aspergillus Sinusitis for Expert Patients and non-Specialist Clinicians

Expert Information for Patients, GPs, and Specialist Nurses

🔎 What Is Aspergillus Sinusitis?

Aspergillus sinusitis refers to fungal involvement of the paranasal sinuses by Aspergillus species, especially A. fumigatus. It spans a spectrum from benign colonisation to destructive invasive disease, depending on the host’s immune status.

There are four main clinical forms, with distinct presentations and treatment approaches.

🧬 Main Forms

Type Description Typical Host
Allergic Fungal Rhinosinusitis (AFRS) A hypersensitivity reaction with nasal polyps and allergic mucin Atopic patients (often young adults)
Fungal Ball (Mycetoma) A dense fungal plug within a sinus cavity, non-invasive Immunocompetent individuals
Chronic Invasive Fungal Sinusitis Slowly progressive mucosal and bony invasion Diabetics, immunosuppressed
Acute Invasive Fungal Sinusitis Rapidly destructive, vascular invasion, necrosis Severely immunocompromised (e.g. neutropenic, transplant recipients)

đź‘Ą Who Is at Risk?

Depends on form:

đźź© AFRS:

  • Asthma, eczema, allergic rhinitis

  • Nasal polyps

  • Fungal IgE sensitisation (esp. Aspergillus)

🟨 Fungal Ball:

  • Older adults

  • Dental work (esp. upper molars with root involvement)

  • Chronic sinus blockage or prior surgery

🟧 Chronic Invasive:

  • Long-term corticosteroid or immunosuppressive use

  • Poorly controlled diabetes

🟥 Acute Invasive:

  • Haematological malignancies

  • Bone marrow/stem cell transplant

  • Neutropenia or severe COVID-19

⚠️ Clinical Features

Symptom Common To
Nasal congestion, discharge All forms
Facial pain or pressure All forms
Nasal polyps AFRS
Foul smell or thick mucus Fungal ball
Eye pain, proptosis, visual changes Invasive forms
Fever, systemic illness Invasive forms
Black eschar or necrosis Acute invasive sinusitis (medical emergency)

🧪 Diagnosis

Initial Evaluation:

  • Nasal endoscopy: mucosal thickening, polyps, or black necrosis

  • CT scan: sinus opacification, bone erosion, hyperdense lesions

  • MRI: assesses orbital or intracranial extension in invasive cases

Microbiology & Histopathology:

  • Direct microscopy or fungal stain (e.g. GMS)

  • Culture for Aspergillus spp.

  • Aspergillus-specific IgE/IgG in AFRS

  • Tissue biopsy is essential in invasive disease

đź’Š Treatment

đźź© AFRS:

  • Functional endoscopic sinus surgery (FESS) to clear sinuses

  • Oral and topical corticosteroids

  • Antifungals (controversial; may reduce recurrence)

  • Allergen immunotherapy in selected cases

🟨 Fungal Ball:

  • Surgical removal only (FESS)

  • No systemic antifungal needed unless complications arise

🟧 Chronic Invasive:

  • Surgical debridement

  • Long-term oral antifungals (e.g. voriconazole, posaconazole)

  • Monitor drug levels and imaging

🟥 Acute Invasive:

  • Urgent surgical debridement

  • High-dose IV antifungals (voriconazole or liposomal amphotericin B)

  • Reversal of immunosuppression

  • High mortality if delayed — requires ICU and ID team coordination

🧾 Monitoring

  • Repeat imaging for resolution (especially invasive forms)

  • Symptom scores for AFRS and post-FESS recovery

  • Antifungal levels and LFTs if systemic therapy used

  • Endoscopic surveillance in high-risk or relapsing patients

đź“š More Information

by GAtherton

Chronic Pulmonary Aspergillosis (CPA) for Expert Patients and Non-Specialist Clinicians

Expert Information for Patients, GPs, and Specialist Nurses

🔎 What Is CPA?

Chronic Pulmonary Aspergillosis (CPA) is a long-term fungal lung infection caused by Aspergillus, typically A. fumigatus. It occurs in individuals with underlying lung damage and can progress slowly over months to years. It includes several subtypes ranging from cavitary lesions to fibrosing disease and fungal balls (aspergillomas).

🧬 Subtypes of CPA

Subtype Description
Simple aspergilloma Fungal ball within a pre-existing lung cavity
Chronic cavitary pulmonary aspergillosis (CCPA) Multiple cavities ± fungal balls; progressive
Chronic fibrosing pulmonary aspergillosis Advanced form with fibrosis and volume loss
Subacute invasive aspergillosis (SAIA) Intermediate between CPA and invasive disease; more rapid progression over weeks to months
Aspergillus nodules Discrete nodules without cavitation; may mimic malignancy

đź‘Ą Who Is at Risk?

CPA typically affects people with pre-existing lung disease or immune dysfunction, including:

  • Tuberculosis (old or active)

  • COPD and emphysema

  • Bronchiectasis

  • Sarcoidosis

  • Prior pneumothorax

  • Lung cancer or surgery

  • Diabetes mellitus

  • Low-dose or chronic steroid use

⚠️ Common Symptoms

CPA symptoms often evolve insidiously over >3 months:

  • Chronic productive cough

  • Haemoptysis (may be mild or massive)

  • Fatigue and weight loss

  • Breathlessness

  • Chest discomfort

  • Fever (occasional)

🧪 Diagnosis

Diagnosis of CPA requires the combination of:

  1. Symptoms ≥3 months

  2. Imaging:

    • CT chest: cavitary lesions, pleural thickening, aspergilloma, fibrotic changes

  3. Microbiology:

    • Positive sputum culture, PCR, or histopathology for A. fumigatus

  4. Serology:

    • Elevated Aspergillus IgG antibodies (essential for diagnosis)

  5. Exclusion of other diseases:

    • Especially active TB, malignancy, and bacterial infections

đź’Š Treatment

First-Line:

  • Oral triazole antifungals (minimum 6 months, often longer)

    • Itraconazole

    • Voriconazole

    • Posaconazole

  • Therapeutic drug monitoring is crucial

Additional:

  • Inhaled antifungals (e.g. amphotericin B) in selected cases

  • Surgery for localised disease or life-threatening haemoptysis (if fit)

  • Bronchial artery embolisation for bleeding control

  • Physiotherapy and nutritional support

🧾 Monitoring

  • CT scan every 3–6 months during treatment

  • Aspergillus IgG titres to monitor disease activity

  • Liver function and antifungal levels (monthly at minimum)

  • Symptom tracking (cough, energy, weight, breathlessness)

đź“š More Information

by GAtherton

Patient referrals in the NHS - how it works

Here’s why GPs in the NHS usually refer patients first to a local specialist (e.g. a local respiratory team) rather than directly to a national centre like the National Aspergillosis Centre (NAC):

🏥 1. The NHS Referral Pathway Is Tiered (Local → Regional → National)

  • The NHS is designed to escalate care through “levels”:

    • GP → Local Consultant → Tertiary/National Centre

  • This structure ensures efficient use of resources and prioritises local care where appropriate.

  • National centres are not intended to be the first point of contact, except in emergencies or highly specialised pre-agreed pathways.

🧠 Analogy: You don’t go straight to a brain surgeon for a headache — you start with your GP.

đź“ť 2. Referral Criteria for NAC Require Specialist Input

  • The NAC (based in Manchester) is a nationally commissioned tertiary centre, which means:

    • It only accepts referrals from consultants (not GPs directly)

    • It expects that basic tests (CT scan, IgE, Aspergillus-specific IgE/IgG, eosinophils, spirometry) have been done

    • Local teams should attempt initial diagnosis and management, and refer on if the case is complex, resistant, or unusual

📄 The NAC’s referral form specifically asks for consultant details and supporting investigations.

⚖️ 3. Clinical Governance and Local Responsibility

  • Local respiratory consultants are responsible for:

    • Ruling out common conditions first

    • Starting standard ABPA or CPA treatment (e.g. steroids, itraconazole)

    • Monitoring early response

  • This ensures that patients who are referred to the NAC are those who really need advanced care, e.g.:

    • Antifungal resistance

    • Multiple relapses

    • Atypical radiology

    • Drug intolerance or failure

    • Need for biologics, surgery, or MDT input

🧭 4. NHS Resource Planning and Fairness

  • National centres are funded to manage only the most complex or rare cases across the UK.

  • If GPs referred patients directly, national centres would become overwhelmed — and many patients would bypass the local care they actually need.

💡 It's not about gatekeeping — it's about managing capacity and focusing expertise where it’s most needed.

🛠️ What Can Patients Do?

If you suspect ABPA or CPA and your GP doesn’t know about NAC:

  1. Ask to be referred to a local respiratory team — ideally one with fungal disease knowledge.

  2. Share NAC information NAC referral criteria & guidance, Support for professionals

  3. If already under a consultant and you're not improving, ask:

    “Would you consider referring me to the National Aspergillosis Centre for specialist input?”

  4. If you're already diagnosed with ABPA or CPA and not improving, you can request your consultant refer you to NAC, citing lack of progress or drug intolerance.

by GAtherton

Accessing GP Services: A Detailed Overview

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In May 2023, the UK government and NHS announced a multi-million-pound overhaul of primary care services to make it easier for patients to access their general practitioners (GPs). Here, we provide a detailed overview of what these changes mean for patients, from the technology upgrades to the role of care navigators.

Key Highlights of the New Plan

  • Immediate Response to Patient Queries

Patients can now find out how their request will be handled on the same day they contact their GP practice. This eliminates the need for patients to call back later to find out the status of their query.

  • Technology Upgrades

This year, a ÂŁ240 million investment will be made to replace old analogue phone systems with modern digital telephony. This ensures that patients never encounter engaged tones when calling their GP practice.

  • Online Tools

Easy-to-use online tools will be introduced to help patients get the care they need as soon as possible. These tools will be integrated with the clinical systems, allowing practice staff to identify patients and their information quickly.

  • Urgent and Non-Urgent Appointments

If a patient's need is urgent, they will be assessed and given an appointment on the same day. For non-urgent cases, appointments should be offered within two weeks, or patients will be referred to NHS 111 or a local pharmacy.

  • Role of Care Navigators

Receptionists will be trained to become expert 'care navigators' who gather information and direct patients to the most suitable healthcare professional. This aims to simplify and streamline the process for patients.

What This Means for Patients

  • Easier Access to GPs

The new plan aims to end the 8 a.m. scramble for appointments by improving technology and reducing bureaucracy. Patients will find it easier to get through to their general practice team online or over the phone.

  • Faster Response Times

Patients will know how their query will be managed on the same day they make contact. This is a significant improvement over the previous system, where patients often had to call back or wait for a response.

  • More Convenient Options

The introduction of modern online booking and messaging systems will offer patients a convenient way to get the help they need, freeing up phone lines for those who prefer to call.

  • Specialised Care

Care navigators will help assess, prioritise, and respond to patient needs. They will direct patients to other professionals within the general practice or other medical professionals, such as community pharmacists, who can best meet the needs of the patients.

The government's new plan to overhaul primary care services is a significant step towards modernising how patients contact their GP surgeries. With technology upgrades, specialised care navigators, and a commitment to faster response times, patients stand to benefit greatly from these changes. The aim is to make things more convenient for patients and make the workload more manageable for general practice teams, thereby improving the overall healthcare system.

The full plan can be accessed here. 

What can you expect from a good GP practice: A handy guide published by the Care Quality Commission (CQC) is available here. 


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by Lauren Amphlett

NAC CARES Team Joins European Lung Foundation (ELF) Patient Organisation Network

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The National Aspergillosis CARES Team are excited to announce its membership in European Lung Foundation (ELF) Patient Organisation Network. This collaboration marks a milestone in the team's commitment to enhancing the lives of individuals affected by aspergillosis.

Founded in 2000 and working in partnership with the European Respiratory Society (ERS), ELF is a patient-led organisation that works internationally to bring patients and the public together with healthcare professionals to improve lung health and advance diagnosis, treatment, and care.

The ELF Patient Organisation Network is a hub for respiratory patient organisations throughout Europe, fostering knowledge exchange, collaboration, and advocacy initiatives to improve respiratory health and well-being across the continent. Membership of the network provides the CARES Team with access to invaluable resources, expertise, and opportunities to positively impact the lives of those living with aspergillosis.

As an active participant in this network, the NAC CARES Team will contribute expertise, raise awareness at both national and European levels, and help drive positive change. In addition to knowledge sharing and advocacy, the ELF Patient Organisation Network offers opportunities for networking and collaboration. By connecting with like-minded organisations, the team can establish partnerships, share experiences, and collaborate on joint initiatives to create a more supportive environment for individuals living with aspergillosis in Europe.

You can read more about ELF here: https://europeanlung.org/en/

 
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by Lauren Amphlett

NAC CARES Virtual Challenge - We've Made It From Lands End to John O'Groats!

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We're pleased to announce that the NAC CARES Team has successfully completed our virtual journey from Lands End to John O'Groats. Over the past few months, our team has walked, cycled, and run an incredible total of 1744km (1083.9 miles)! Starting on February 1st, World Aspergillosis Day, we set ourselves 100 days to complete the challenge, but, we completed it ahead of schedule, on May 12th, 5 days sooner than anticipated.

Our virtual expedition has been a grand tour of the UK, from the stunning cliffs of Lands End in Cornwall to the rugged shoreline of John O'Groats in Scotland. We virtually journeyed through England's diverse landscape, passing through picturesque countryside, vibrant cities, and historic towns. From the iconic signpost at Lands End to the bustling streets of Bradford, the rich cultural heritage of Huddersfield, the dramatic landscapes of the Peak District National Park, the green spaces and cultural landmarks of Sheffield, and the legendary Sherwood Forest - each place a unique story in our broader narrative.

Crossing the border into Scotland, we continued our journey through the Scottish Highlands, with its breathtaking panoramas and rich history. We passed through the charming village of Fort Augustus, navigated around the famous Loch Ness, and made our way through the Cairngorms National Park, known for its diverse ecosystems, unique flora, and rare wildlife.

Our journey culminated at John O'Groats, traditionally acknowledged as the extreme northern point of mainland Britain, marking a triumphant conclusion to our endeavour.

But the importance of this journey extends far beyond the physical accomplishment. This effort was a symbol of unity, resilience, and determination, resonating with the values we uphold in our battle against fungal infections. We embarked on this challenge to raise much-needed funds and awareness for the Fungal Infection Trust, an organisation dedicated to advancing research, promoting awareness, and improving treatments for individuals affected by fungal infections.

We want to express our gratitude for all the support we have had throughout this journey. However, the fight against fungal infections doesn't stop here.

If you have not yet made a contribution or if you feel moved to give more, please do so via our fundraising page:

https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis

Thank you for your part in this journey and for standing alongside us in this vital cause. We celebrate the difference we've made together and anticipate the positive impacts we will continue to make in the future!


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by Lauren Amphlett

NAC CARES Virtual Challenge - 803 miles (1292.41 km) down

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It's been a couple of weeks since our last update, and we're excited to share our progress on our team's virtual Lands End to John O'Groats challenge. As most of you may know, we embarked on this journey to walk, cycle, and run the length of the UK to raise money for the Fungal Infection Trust. Despite the Easter holidays, we haven't stopped and are mostly being fueled by Easter eggs right now!

We have now covered a total of 1292.41km (802.6 miles), which is 74% of the distance, in only 67% of the planned time of 100 days. This puts us well ahead of schedule, with just 451.79km (280.6 miles) remaining in our challenge.

Currently, we are in Scotland and approaching the iconic Forth Bridge. Along the way, we have passed several historic landmarks, including:

Hadrian's Wall: A UNESCO World Heritage Site, this ancient Roman fortification stretches for 73 miles (117 km) across the North of England from the west coast of Cumbria near the Solway Firth to the east coast near the River Tyne in Tyne and Wear. Constructed in AD 122 under Emperor Hadrian's rule, the wall was designed to separate Roman Britain from the barbarian north and served as a military defence line.

Edinburgh Castle: Perched on an extinct volcano, this historic fortress dominates the skyline of Scotland's capital city. With its origins dating back to the 12th century, the castle has been a royal residence, a military garrison, and a prison over the years. Today, it serves as a popular tourist attraction and houses the Scottish Crown Jewels and the Stone of Destiny, also known as the Stone of Scone or the Coronation Stone, which is a historic and symbolic block of red sandstone, measuring approximately 26 inches (66 cm) in length, 16 inches (40 cm) in width, and 11 inches (28 cm) in depth.

Our accelerated pace is down to our team's hard work and dedication. We are making excellent progress in our challenge, but we still have a significant distance to cover to reach John O'Groats and our fundraising goal. We are grateful for your support and are confident that, together, we will make a difference in the fight against fungal infections.

Thank you for following us on this journey; we look forward to sharing more updates with you soon. You can donate via the link below.

https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis

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by Lauren Amphlett

2023 Bronchiectasis Patient Conference

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The 2023 Bronchiectasis Patient Conference, organised by the European Lung Foundation, is a popular event for patients each year. This year we asked two of our patients who attended to share their personal experiences and thoughts on the conference, highlighting its importance and impact.

Our patients reported that the conference attracted 1,750 registrations from 90 countries, and during an online questionnaire, 47% of participants identified as living with bronchiectasis. Dr Fiona Mosgrove's presentation on "Living with Bronchiectasis" provided valuable insights on lifestyle, nutrition, and mental health, recommending two books for further reading.

Prof. James Chalmers discussed a potential new treatment involving an anti-pseudomonas monoclonal antibody, demonstrated through engaging video clips. The conference also covered other topics such as Phage therapy, bronchiectasis through different life stages, and the importance of end-of-life care discussions.

Both patients found the conference to be an informative and valuable experience, despite facing some technical difficulties and unclear presentations due to those difficulties. They appreciated Dr Chalmers' well-paced talk on new treatments, as well as Dr Mosgrove's discussion on mental health and airway clearance techniques. One patient noted that while coexisting diseases like chronic obstructive pulmonary disease (COPD) and asthma were mentioned, there was no reference to Aspergillosis. The conference emphasised the importance of daily airway clearance, exercise, relaxation, and ongoing research for more effective treatments.

In summary, both patients found the 2023 Bronchiectasis Patient Conference to be an enriching experience, providing valuable insights and practical takeaways for managing the condition. Despite some technical issues, the conference succeeded in raising awareness and fostering a sense of community among people living with bronchiectasis.

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by Lauren Amphlett

NAC CARES Virtual Challenge – 587.5 miles (945.11 km down)

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We are excited to share with you an update on our team's virtual Lands End to John O'Groats challenge. As you may know, our team is walking, cycling, and running the length of the UK to raise money for the Fungal Infection Trust. We are proud to announce that we have completed 54% of the challenge, which is equivalent to 945.11km or 587.5 miles.

Currently, we are virtually passing through the breathtaking Yorkshire Dales National Park, having already passed through several noteworthy locations on our journey. These include:

    • Bradford: A vibrant city located in West Yorkshire, known for its industrial history and impressive Victorian architecture.
    • Huddersfield: A bustling town with a rich cultural heritage, including notable landmarks such as Castle Hill and St. George's Square.
    • The Peak District National Park: A stunning area of natural beauty spanning across several counties, including Derbyshire, Cheshire, and Staffordshire. It's famous for its dramatic landscapes, rugged moorlands, and picturesque villages.
    • Sheffield: A vibrant city known for its steel industry, green spaces, and cultural landmarks such as the Millennium Gallery and Winter Garden.
    • Sherwood Forest: A legendary location associated with Robin Hood and his band of merry men, known for its ancient oaks and rich wildlife.
    • Rufford Abbey: A former Cistercian monastery located in Sherwood Forest, which is now a popular tourist attraction featuring a country park and gardens.
    • Sherwood Pines Forest Park: A sprawling woodland park with a range of outdoor activities, including cycling, walking, and a Go Ape treetop adventure course.
    • Robin Hood's Wheelgate Park: A family-friendly theme park featuring a range of rides, attractions, and live shows.
    • Nottingham: A historic city with a rich cultural heritage, including landmarks such as Nottingham Castle, the Old Market Square, and the Lace Market.

We are thrilled to have made it this far, and we are well ahead of schedule. We are grateful for your continued support, but we still have a long way to go to reach our fundraising goal and John O' Groats; we are confident both will be achieved, and with it, we will make a difference in the fight against fungal infections.

Thank you for joining us on this journey, and we look forward to sharing more updates with you soon. You can donate via the link below.

https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis

 

 


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by Lauren Amphlett

NAC CARES Virtual Challenge - 418.5 miles (673.54km down)

The NAC CARES Team are 30 days into their 100-day challenge to travel the length of the UK from Land End to John O' Groats (LEJOG). The last 30 days have seen the team run, cycle and walk to rack up the miles for the 1,084 mile (1,743km) challenge.

The team is outside Coventry and virtually passed through many well-known landmarks, including Stratford-Upon-Avon, The Royal Shakespeare Company Theatre, Oxford and Kenilworth Castle. The beauty of a virtual challenge is that even with the impending cold weather forecast, the team can still check off the miles on treadmills and indoor bikes so, in the words of a Disney Princess, let it snow!

The work of the Fungal Infection Trust (FIT) improves awareness, treatment and outcomes for all those affected by fungal disease. FIT is a small charity who have, over the years, supported the work of the NAC CARES Team, allowing them to maintain their unique work. Every pound raised will help the Trust continue to help people around the world. You can read more about their work here.

To donate, visit here.

Royal Shakespeare Company Theatre
Kenilworth Castle

by Lauren Amphlett