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.
Help shape the future of aspergillosis care across Uk & Europe
“Can patients do more than just cope with this condition?”
The answer is yes.
The European Lung Foundation (ELF)
and its
Aspergillosis Patient Advisory Group (PAG)
give patients and carers a chance to contribute to something bigger: better awareness, better information, better research, and better care.
What is ELF?
ELF is a Europe-wide organisation that brings patients, carers, healthcare professionals and researchers together to improve lung health information, treatment and care.
One of ELF’s strongest advantages is that it works across Europe, not just in one country. It also makes key information available in several languages, helping more people access reliable information about lung conditions, including aspergillosis.
You can read ELF’s patient information on aspergillosis here:
Aspergillosis – European Lung Foundation.
What is the Aspergillosis Patient Advisory Group?
The Aspergillosis PAG is part of ELF’s wider network of
Patient Advisory Groups.
These groups bring together people with experience of specific lung conditions, or experience as carers, so that patient views can help improve treatment and healthcare.
The Aspergillosis PAG works to raise awareness of aspergillosis and improve diagnosis, treatment and care. It also works alongside healthcare professionals and researchers involved in the Chronic Pulmonary Aspergillosis Network (CPAnet), helping identify research priorities and information gaps for both patients and professionals.
Why does this matter?
Aspergillosis is still not well understood in many places. Diagnosis can be delayed, information can be hard to find, and patients often feel that few people truly understand what living with the condition is like.
By involving patients and carers directly, ELF helps ensure that real-life experience is not left out of the conversation. This can influence education, awareness work, research priorities and wider discussions about care across Europe.
What is in it for the patient or carer?
This is an important question, because volunteering your time and energy is a big ask, especially when you are already managing illness, fatigue, appointments, uncertainty or caring responsibilities.
So it is only fair to be clear and honest about what people may gain from taking part.
1. A chance to make your experience count
Many people with aspergillosis have learned difficult lessons the hard way. Getting involved gives you a chance to turn that experience into something useful — helping improve information, shape priorities and make life a little easier for future patients.
2. Better understanding and confidence
Being involved can help you better understand how research, awareness work and patient representation operate. Some people find that this gives them more confidence when speaking about their condition and navigating their own care.
3. Connection beyond your local area
Because ELF is Europe-wide, patients are not limited to the perspective of one hospital, one region or one country. For people living with a relatively uncommon condition, that wider connection can feel valuable and reassuring.
4. The opportunity to be heard
Many patients are used to feeling overlooked. PAGs are designed so that patient and carer perspectives are actively included in projects and discussions, rather than being an afterthought.
5. A sense of purpose
Some people find that involvement helps them move from simply living with a difficult condition to doing something constructive with that experience. It will not suit everyone, but for some it can be meaningful.
6. Support and training
ELF says it provides support, guidance and training to help people share their perspective and get involved in projects. It also encourages interested patients and carers to use its free online European Patient Ambassador Programme (EPAP), which introduces the skills and knowledge needed to represent yourself and others effectively.
What it is not
It is also important to be realistic.
- It is not medical care.
- It does not replace your doctor, nurse or specialist team.
- It is not a route to faster treatment.
- It is not a paid role.
ELF states that PAG involvement is voluntary and that it is unable to pay for people’s time.
Who can join?
ELF says most PAGs are open to new members from European countries. In general, people are invited to get involved if they are over 18, have experience as a patient or carer, live in a European country, can communicate in English, are interested in improving healthcare and treatment across Europe, and are willing to share their perspective.
That said, this should not feel like an all-or-nothing commitment. Not everyone can give a lot of time, and health can change. Even modest involvement can still be worthwhile.
Why mention this to our groups?
Many people in aspergillosis support communities have exactly the kind of insight that is valuable here: the reality of diagnosis, treatment, daily management, side effects, uncertainty, isolation, and learning how to cope.
Those experiences matter. They can help improve what is researched, what is explained, and how future patients are supported.
Interested?
You can explore more here:
- ELF information on aspergillosis
- ELF Patient Advisory Groups
- ELF Aspergillosis Patient Advisory Group
You do not need to be an expert. You do not need to be highly confident. You do not need to commit to everything.
But if you have lived with aspergillosis, or cared for someone who has, your experience may be more valuable than you think.
In short: this is a voluntary opportunity to help improve understanding, research and care for aspergillosis across Europe, while connecting with a wider patient community and making sure lived experience is heard.
How to Join Our Microsoft Teams Meetings - Troubleshooting
(For patients, carers and external guests)
You do not need a Microsoft account to join.
Most people can join easily using their internet browser.
✅ The Easiest Way to Join (Laptop or Desktop)
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Click the meeting link we sent you.
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When prompted, choose:
“Continue in this browser”
(You do NOT need to download Teams.) -
Type your name.
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Click Join now.
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If asked, allow access to your microphone and camera.
Please wait in the lobby until we admit you.
📱 Joining on a Phone or Tablet
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Tap the meeting link.
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If you already have the Microsoft Teams app, it will open automatically.
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If not, you can download the free Teams app from your app store.
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Enter your name and join.
Phones often work even if laptops have problems.
⚠️ If You Are Asked to Sign In
You do not need to sign into Microsoft.
If you see a sign-in screen:
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Look for “Join as guest”
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Or close the page and reopen the link
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Or choose “Continue in this browser”
Avoid signing in with a work or NHS account unless you are sure it allows external meetings.
🔧 If It Doesn’t Work on Your Laptop
Try one of these:
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Open the link in a Private / Incognito window
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Try a different browser (Chrome or Edge usually work best)
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Make sure you are not already signed into multiple Microsoft accounts
If you are using a work or NHS laptop, security settings may block external meetings. In that case:
👉 Try your personal laptop or your phone.
🎤 Audio & Camera Tips
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If your microphone does not work, leave the meeting and rejoin.
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If you prefer, you can turn your camera off.
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You can also use the chat box to type questions.
📞 Still Having Trouble?
If you cannot join:
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Try using your phone instead.
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Or contact us before the meeting and we will help where we can.
Season’s Greeting
As the year draws to a close, we would like to send warm wishes to everyone in the aspergillosis community — patients, families, carers, clinicians, nurses, scientists, and all professionals working to improve care and understanding.
Living with aspergillosis, or supporting those who do, often requires resilience, patience, and compassion. Throughout this year, we have seen remarkable strength from patients, dedication from healthcare teams, and generosity of spirit across our wider community.
At this time of reflection and renewal — whether you mark Christmas, another festival, or simply the turning of the year — we hope you find moments of rest, comfort, and connection. May the days ahead bring steadier health where possible, renewed energy, and continued progress in care, research, and support.
Thank you for being part of this community.
With warmest wishes for peace, kindness, and hope — now and into the New Year.
Aspergillosis Patient Conference 2025 – summary and recording
The Aspergillosis Patient Conference 2025 took place online on 29 November 2025. The event was co-organised and co-presented by the National Aspergillosis Centre (NAC) and The Aspergillosis Trust, in collaboration with the European Lung Foundation (ELF).
The free conference brought together people living with aspergillosis, carers, patient advocates, clinicians and researchers from across Europe and beyond. Its focus was firmly patient-centred, combining clinical expertise with lived experience to improve understanding, awareness and care.
🎥 The full conference recording is now available to watch online, enabling anyone who missed the live event to benefit from the sessions and discussions.
What the conference covered
Across the programme, speakers explored:
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What aspergillosis is and the different forms it can take
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Symptoms and diagnostic challenges, including delays in recognition
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Current treatment and management approaches
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Living with aspergillosis, shared directly by patients
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What needs to improve, including awareness, education and access to specialist care
Live questions, polling and discussion ensured that patient priorities and real-world concerns shaped the conversation throughout.
Speakers and perspectives
The conference featured a broad range of patient advocates and clinical experts, including:
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People with lived experience of chronic pulmonary aspergillosis (CPA) and allergic bronchopulmonary aspergillosis (ABPA)
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Representatives from NAC, The Aspergillosis Trust and the ELF Aspergillosis Patient Advisory Group
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Respiratory physicians, infectious disease specialists and researchers involved in European clinical guidelines and research
This mix ensured that sessions reflected both medical best practice and day-to-day patient realities.
Who the recording is useful for
The on-demand recording is particularly valuable for:
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People living with aspergillosis and related lung conditions
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Family members, carers and supporters
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Healthcare professionals seeking a patient-focused overview
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Patient organisations and advocates working in respiratory or fungal disease
Why this conference matters
Aspergillosis remains under-diagnosed and poorly understood, despite its significant impact on health and quality of life. This conference highlighted:
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The importance of patient voices in education and guideline development
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The need for earlier diagnosis and clearer care pathways
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The value of collaboration between specialist centres, patient charities and European organisations
By making the recording freely available, NAC, The Aspergillosis Trust and ELF have ensured the conference continues to support patients, carers and professionals well beyond the live event.
Aspergillosis Trust – A Community for Patients
The Aspergillosis Trust is a patient-led charity dedicated to helping people affected by aspergillosis and supporting the wider community of patients, carers, families, and friends. It exists to make life with aspergillosis easier by *raising awareness, sharing information, and bringing people together so no one has to go through this alone. *Aspergillosis Trust Charity
Although aspergillosis is a rare condition, the Trust’s vision is simple and powerful: to make aspergillosis widely recognised so it can be diagnosed earlier, treated more effectively, and better understood — by health professionals and the general public alike.
Why the Trust Matters to You
Shared Experience and Support
The Aspergillosis Trust understands what it’s like to live with a rare lung condition because it’s run by patients and carers themselves. This means the insights and support it offers come from real experience, not just medical textbooks. It connects people who have walked similar paths, helping reduce isolation and fostering practical encouragement.
Information You Can Use
The Trust supports people around the world by providing information, resources, and real and virtual support networks. Whether you’re newly diagnosed or navigating long-term treatment, the Trust’s curated links, articles, and connections can help you find reliable answers and understand your options.Charity Commission
Raising Awareness and Understanding
By amplifying patient voices and sharing stories, the Trust helps increase understanding of aspergillosis among doctors, nurses, and healthcare teams. This awareness work helps ensure more people are referred for specialist care sooner, leading to better outcomes.
Where Community Meets Practical Help
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The Trust offers a network of support and encouragement for people living with aspergillosis.
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It provides curated links and resources to help you find information relevant to your situation.
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Through awareness campaigns and shared patient stories, it works to improve understanding and recognition of aspergillosis among clinicians and the public.
Whether you’re looking for knowledge, community, or reassurance that others understand what you’re going through, the Aspergillosis Trust is a valuable companion on your journey.
For more about how to connect or get support, you can visit their website or reach out directly via their contact page.
Why Join the Aspergillosis Patient Advisory Group (PAG)?
Supported by the European Lung Foundation (ELF), NAC CARES, and the European Respiratory Society (ERS).
Living with aspergillosis — CPA, ABPA, SAFS, Aspergillus bronchitis or sinus disease — can be overwhelming. Many people feel isolated, struggle to find clear information, or feel unsure how to influence the care they receive.
That is exactly why the Aspergillosis Patient Advisory Group (PAG) exists.
The PAG is supported by the European Lung Foundation (ELF) — based in Sheffield — and by NAC CARES, the patient engagement and support team at the UK National Aspergillosis Centre (NAC) in Manchester. Together, ELF, NAC CARES and the PAG work closely with the European Respiratory Society (ERS) to make sure the patient voice shapes research, education, and clinical practice across Europe and the UK.
What ELF Does
ELF brings together patients, carers, researchers and professionals from across Europe including the UK. It:
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Provides clear, trustworthy patient information
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Organises and hosts patient advisory groups
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Ensures patient voices are included in ERS guidelines and research
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Supports patient–professional workshops, surveys and consultations
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Helps patients shape respiratory policy and awareness campaigns
Because ELF is UK-based, participation is easy for UK patients.
What NAC CARES Does
NAC CARES is the patient-facing team at the National Aspergillosis Centre in Manchester.
They:
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Support UK patients to join the PAG
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Help connect lived experience from UK clinics to the wider European PAG
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Share updates, resources, and educational material
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Bring PAG priorities back into NAC’s clinical and research work
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Ensure UK patients feel included, represented and supported within ELF and ERS structures
NAC CARES acts as a bridge between UK clinical expertise and European patient involvement.
What the Aspergillosis PAG Does
The PAG ensures that people living with aspergillosis have a direct say in:
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Research design
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European Respiratory Society guidelines
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New diagnostic and treatment pathways
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Patient-friendly information materials
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Awareness projects and health campaigns
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Surveys that drive change in policy and clinical practice
Your lived experience is treated as meaningful expertise.
Why Join the PAG? Why Spend Your Energy?
Many people with aspergillosis have limited energy.
Here is why members say it is worth it:
1. You receive clear, reliable information
Updates on research, antifungals, biologics, trials and guidelines — written for patients, not scientists.
2. Your voice shapes real decisions
ERS guideline committees and research teams listen.
Your input changes how care is delivered.
3. You feel less alone
Aspergillosis is rare.
The PAG connects you with people across Europe and the UK who truly understand.
4. You choose how involved you want to be
You can simply receive updates — or you can complete the occasional survey, join a focus group, or help shape a guideline.
No pressure, no obligation.
5. It improves care for everyone — including you
Your experience helps highlight what really matters:
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Delayed diagnosis
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Side-effects
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Treatment access
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Fatigue and breathlessness
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Impact on quality of life
This evidence influences clinicians, researchers and policymakers.
6. It is free, inclusive and easy to join
No travel.
No cost.
All online.
Europe includes the UK, and ELF is based in Sheffield.
Who Can Join?
Anyone affected by aspergillosis:
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Patients with CPA, ABPA, SAFS, Aspergillus bronchitis or sinus disease
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People with fungal allergy in asthma or bronchiectasis
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Family members and carers
No medical background needed.
How to Join
You can join in a few minutes:
👉 https://europeanlung.org/en/patient-advisory-groups/
Choose “Aspergillosis”.
You’ll then receive updates and invitations to take part — always at your own pace.
In One Line:
The PAG gives you good information, a real voice in shaping aspergillosis care, and a supportive community — with full backing from ELF, ERS and NAC CARES.
💙 The NHS Is Changing: What “Value-Based Healthcare” Means for People with Aspergillosis
The NHS is beginning to look not just at how many people it treats, but how well those treatments work — and whether every pound spent makes the biggest difference to patients’ lives.
This idea is called value-based healthcare (VBHC).
🧭 What “value” means
In simple terms, value =
Better health and quality of life for patients ➗ the resources and effort used to achieve it.
It’s not about cutting care.
It’s about making sure time, money, and medicines are used where they bring the greatest benefit — especially for people with long-term or complex conditions like aspergillosis.
⚙️ From “productivity” to “value”
Until now, the NHS has mostly measured productivity — how many people are seen, how many tests or treatments are delivered, and how quickly.
That approach works for short-term or simple care (like hip replacements or cataract surgery), but it doesn’t tell the full story for complex, long-term conditions such as aspergillosis, where the real goal is to stay well, avoid hospital admissions, and maintain a good quality of life.
So, over the next few years, these older productivity measures will gradually be replaced or balanced with value-based measures that ask:
“Did this care actually help patients live better and longer — and was it a good use of NHS resources?”
This means success will be judged more on outcomes and experience than on numbers and speed.
🌿 Why this matters for people with aspergillosis
Aspergillosis, whether Allergic Bronchopulmonary Aspergillosis (ABPA) or Chronic Pulmonary Aspergillosis (CPA), is often complicated and different for every patient.
Traditional NHS targets — such as waiting times or the number of appointments — don’t always show whether patients are breathing easier, feeling stronger, or coping better at home.
Value-based care changes that by focusing on:
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Real health outcomes – fewer flare-ups, better lung function, reduced fatigue
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Patient experience – how well care fits your needs, and how supported you feel
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Sensible use of treatments – balancing benefit, side effects, and cost
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Joined-up care – making sure specialists, GPs, and community teams work together smoothly
🏥 How the National Aspergillosis Centre (NAC) fits in
The National Aspergillosis Centre (NAC) already works in a value-based way:
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It tracks outcomes such as infection control, hospital admissions, and steroid use
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It listens to patients through groups, surveys, and education sessions
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It combines research, expert treatment, and patient partnership to improve care
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It shares learning with hospitals across the UK
As the NHS moves further toward value-based care, NAC’s approach — measuring what really matters to patients — is exactly the kind of model the health service wants to grow.
🔄 What might change over the next few years
You may start to notice:
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More focus on your experience and progress: you might be asked to fill in short questionnaires about symptoms and quality of life (called Patient-Reported Outcome Measures or PROMs).
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Better coordination between hospital, GP, and community teams — digital health records will help your care stay connected.
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New measures of success: NAC may report things like “flare-ups prevented” or “improvement in wellbeing” rather than only how many people were seen.
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More evidence about what works: shared data will help identify which treatments or combinations give the most benefit.
⚠️ What it does not mean
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It doesn’t mean fewer services or reduced access for people with complex lung disease.
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Rare conditions like aspergillosis will continue to need specialist national centres because they provide expert care that general services can’t.
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The goal is to show that centres like NAC deliver high value — preventing complications, reducing hospital stays, and improving lives.
💬 What you can do
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Give feedback about your health and care — this helps measure real outcomes.
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Take part in surveys or PROMs if asked — these are how value is proven.
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Stay involved in patient groups and discussions — your voice helps shape what “value” means for people living with aspergillosis.
🌱 In summary
The NHS is moving from counting treatments to counting outcomes.
For people with aspergillosis, that means care that’s more personalised, joined-up, and focused on what really matters — your health, comfort, and quality of life.
The National Aspergillosis Centre is well placed to lead this change and to show how specialist, patient-centred care can deliver real value for people with complex lung disease.
💬 Healthwatch: Your Local Voice in the NHS
Living with a long-term lung condition such as aspergillosis, asthma, or bronchiectasis often means regular contact with hospitals, GPs, and community clinics.
Sometimes things work well — and sometimes they don’t.
That’s where Healthwatch comes in.
Healthwatch is an independent organisation that represents patients and the public.
It exists to make sure your experiences help shape the way NHS and social-care services are delivered.
🏛️ What is Healthwatch?
Healthwatch was set up by law to be the official voice of patients and the public in health and social care.
There are two levels:
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Healthwatch England – works nationally to influence NHS and government policy
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Local Healthwatch – works in every local authority area across England, gathering feedback from people using local services
Healthwatch is not part of the NHS, and it’s not a complaints service, but it does have statutory powers to:
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Listen to people’s experiences of care
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Report issues and make recommendations to the NHS, local councils, and care providers
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Request responses from organisations it investigates
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Escalate serious concerns to the Care Quality Commission (CQC)
Learn more on the Healthwatch website.
🌿 Why Healthwatch matters to aspergillosis patients
People living with chronic lung disease often face delays, limited understanding, or difficulties accessing ongoing support.
Healthwatch helps make sure those experiences aren’t ignored.
1. Raising the patient voice
You can share your experience of healthcare — good or bad — with your local Healthwatch.
They collect stories from across the community and use them to:
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Identify patterns (for example, problems with accessing respiratory clinics or antifungal monitoring)
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Produce reports and recommendations for local NHS decision-makers
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Push for improvements to long-term care pathways and community support
2. Helping to improve new neighbourhood health hubs
As NHS care moves into the community, Healthwatch plays a key role in making sure new Neighbourhood Health Hubs are:
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Accessible for people with limited mobility or oxygen needs
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Located where public transport and parking work for patients
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Designed with chronic-illness patients in mind, not just short-term care
You can feed in your ideas through Healthwatch about what’s working and what isn’t in new NHS community models.
3. Providing information and signposting
If you’re unsure where to go for care — GP, hospital, or new health hub — or how to complain or appeal a service decision, Healthwatch can point you in the right direction.
They offer clear, local information about:
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NHS patient transport
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The Healthcare Travel Costs Scheme (HTCS)
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Local support groups and community services
4. Supporting patient involvement
Healthwatch works with NHS organisations to include patients and carers in planning and reviewing services.
If you’d like to get involved as a patient representative or share your experience of aspergillosis services, Healthwatch can help you join local working groups or consultations.
5. Spotlighting inequalities
Healthwatch highlights where certain groups are left behind — for example:
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People with rare or complex conditions
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Patients in rural or deprived areas
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Those unable to use digital appointment systems
This helps ensure people with chronic lung conditions are not overlooked when new community-care models are designed.
⚖️ What Healthwatch can — and can’t — do
| ✅ Healthwatch can | 🚫 Healthwatch can’t |
|---|---|
| Collect and report your experience to NHS leaders | Fix individual clinical problems directly |
| Influence NHS and council decisions | Guarantee faster treatment or appointments |
| Provide advice on local services and support | Replace legal or complaints services |
| Escalate major safety concerns to the CQC | Act as your personal advocate in disputes |
Even so, their influence can be powerful — many improvements in NHS access and transport have started with patient stories collected by Healthwatch.
📍 How to contact your local Healthwatch
Every local area has its own Healthwatch website and phone number.
You can find yours at:
👉 Find your local Healthwatch
When you contact them, you can:
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Fill in a short online form to share your story
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Ask to join a focus group or consultation
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Request accessible information or help finding services
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Subscribe to local updates and reports
If you’d like support from the aspergillosis community, NAC CARES can also help you write or submit your feedback.
💬 Why this matters
“Nothing about us without us.”
Healthwatch exists so that patients — including those with rare and chronic conditions like aspergillosis — can make their experiences count.
By telling your story and feeding back to Healthwatch, you help shape better care for yourself and for others who will face similar challenges in future.