Older patient reviews inhalers, tablets and other medicines with a clinical pharmacist.

Are all your medicines still helping? A guide to polypharmacy and medication reviews

Reviewed: 23 July 2026

People living with several long-term conditions often accumulate medicines gradually. One is prescribed for the original illness, another to prevent complications, and others to manage new conditions or treatment side effects.

Each decision may have made sense when it was made. Years later, however, someone may be taking tablets, inhalers, nebulised treatments, injections, supplements and over-the-counter products prescribed or recommended by several different professionals.

This is known as polypharmacy. It is not automatically a bad thing: several medicines may be necessary and beneficial. The important question is not simply how many medicines someone takes, but whether the complete treatment plan remains safe, manageable and appropriate for the life they are living now.

What does polypharmacy mean?

Polypharmacy means taking multiple medicines. Some definitions use a threshold such as five or more regular medicines, while ten or more is sometimes described as extensive polypharmacy. These numbers are useful for identifying people who may benefit from a review, but they do not tell us whether prescribing is good or bad.

There are two important forms:

Appropriate polypharmacy: all the medicines have a clear purpose, provide worthwhile benefit and are being used safely.
Problematic polypharmacy: the combination may cause more harm than benefit, some medicines are no longer needed, or the treatment routine has become unmanageable.

A person taking twelve well-chosen medicines may have appropriate polypharmacy. Someone taking four medicines that interact, duplicate one another or no longer meet their needs may have problematic polypharmacy.

How do medicine lists become so complicated?

Complex treatment plans rarely appear all at once. They grow over time.

This may happen because:

different conditions are managed by different specialists;
a medicine started during an illness or hospital admission is never reconsidered;
a temporary treatment quietly becomes permanent;
a new medicine is prescribed to manage the side effect of another;
repeat prescriptions continue after the original reason has changed;
guidelines for several individual diseases are combined without considering the total burden;
over-the-counter medicines, vitamins and herbal products are not included in the main record;
the patient’s priorities, health or ability to manage treatment change.

No single clinician may have done anything wrong. The problem is that each medicine can be considered separately while nobody examines the complete picture.

More medicines can mean more opportunities for harm

As the number of medicines increases, it becomes more difficult to predict their combined effect.

Potential problems include:

side effects being mistaken for symptoms of the underlying illness;
one medicine increasing or reducing the effect of another;
several medicines contributing to fatigue, dizziness, confusion or falls;
effects on the kidneys, liver, heart rhythm or blood pressure;
duplicated treatment from different prescribers;
complicated timing instructions that are difficult to follow;
missed doses or accidental double dosing;
monitoring tests not taking place at the right time;
treatment consuming so much time and energy that quality of life suffers.

Older people may be particularly vulnerable because the way the body processes and removes medicines changes with age. Kidney or liver problems, frailty, low body weight and changes in nutrition can also alter how medicines affect someone.

However, problematic polypharmacy is not restricted to older people. Anyone with multiple conditions, several prescribers or a complicated treatment programme may benefit from a review.

When a side effect leads to another prescription

A prescribing cascade occurs when the side effect of one medicine is mistaken for a new medical condition and treated with another medicine.

For example, a medicine may cause ankle swelling, stomach symptoms, dizziness, coughing or sleep disturbance. If the original medicine is not considered as a possible cause, another treatment may be added.

Sometimes the additional medicine is entirely appropriate. But it is worth asking whether a new symptom appeared after a medicine was started or its dose changed.

A good medication review looks backwards as well as forwards:

What was happening when this medicine was started, and does that reason still apply?

Why this matters in aspergillosis

Antifungal medicines can interact with many commonly prescribed treatments.

Azole antifungals such as itraconazole, voriconazole, posaconazole and isavuconazole affect the enzymes the body uses to process other medicines. Other drugs can also raise or lower antifungal levels, sometimes substantially.

Depending on the particular combination, interactions may affect:

antifungal effectiveness;
liver function;
heart rhythm;
steroid exposure;
cholesterol-lowering medicines;
blood thinners;
some antibiotics;
medicines for sleep, pain, anxiety or mood;
immunosuppressive medicines.

Some interactions can be managed by choosing a different medicine, adjusting a dose or carrying out additional monitoring. Others mean that two medicines should not be used together.

For people taking an azole antifungal, it is particularly important that every prescriber, pharmacist and dentist knows about it before recommending something new. This includes medicines bought without a prescription and herbal products.

Medicines include more than tablets

A complete review should include everything being used regularly or occasionally:

prescription tablets and capsules;
inhalers and nebulised medicines;
creams, ointments and eye or ear drops;
injections and biologic treatments;
painkillers, antihistamines and indigestion remedies bought from a pharmacy or shop;
vitamins, minerals and dietary supplements;
herbal and complementary products;
medicines kept “just in case” or taken only when needed.

Patients do not always think of an inhaler, cream or supplement as a medicine, but these products can still cause side effects or interactions.

What is a structured medication review?

A structured medication review is more than checking boxes on a repeat-prescription screen. It is a detailed conversation between the patient and a suitably qualified healthcare professional about the complete medication plan.

NHS England describes it as a review in which the clinician and patient work as equal partners to understand the benefits, risks and alternatives, guided by the person’s needs, preferences and circumstances.

For every medicine, the review should consider:

Why was it originally prescribed?
Is there still a clear reason to take it?
Is it producing a benefit that matters to the patient?
Could it be causing symptoms or side effects?
Does it interact with anything else?
Is the dose still appropriate for the person’s age, weight, kidney and liver function?
Is the necessary monitoring taking place?
Can the person use it correctly and take it at the required time?
Does its likely future benefit justify its present burden?
Could anything be simplified, changed or safely stopped?

A review may result in fewer medicines, but that is not its only possible outcome. It may identify an undertreated symptom, improve inhaler technique, change the timing of doses, arrange overdue monitoring or replace a medicine with a safer alternative.

Who should review the medicines?

For many people, the best starting point is their GP practice. A GP or clinical pharmacist can examine the full prescription record and consider all the person’s conditions together.

Other professionals may also be involved:

Clinical pharmacists are particularly skilled in interactions, side effects, monitoring and simplifying complicated regimens.
Community pharmacists can identify possible problems and help with medicine use, although major changes may need discussion with the prescriber.
Hospital specialists should review medicines prescribed for conditions requiring specialist expertise.
Specialist antifungal pharmacists or clinicians should be involved when changes might affect antifungal treatment.
Respiratory nurses and physiotherapists can help assess inhalers, nebulised treatments and airway-clearance burden.

When several specialists are involved, one person should ideally coordinate the overall plan. A patient should not be left to decide which specialist’s medicine is least important.

When might a review be particularly useful?

Consider asking for a medication review when:

you take several regular medicines;
a new medicine is being added to an already complicated list;
you have recently left hospital;
more than one clinic is prescribing for you;
your kidney or liver function has changed;
you have developed unexplained fatigue, dizziness, falls, confusion, nausea or other symptoms;
you are unsure why you still take something;
the treatment timetable has become difficult to manage;
you have stopped taking something but it remains on the repeat list;
your health priorities or quality of life have changed;
no one has reviewed the complete list recently.

Medication should also be reconciled after a hospital admission. Hospital teams may start, stop or change medicines, and those changes do not always transfer perfectly between hospital, GP and community-pharmacy records.

Preparing for a medication review

Before the appointment, make a list of everything you actually take—not only what appears on the repeat prescription.

Include:

the medicine name and dose;
how often you really take it;
what you believe it is for;
whether it seems to help;
any side effects or practical difficulties;
non-prescription and herbal products;
medicines prescribed by hospitals or private services;
anything you have stopped or use differently from the instructions.

If making a list is difficult, bring the medicine boxes, inhalers, bottles and supplements with you. This is sometimes called a “brown bag review”. Photographs of packaging can also help during a telephone or video consultation.

Be honest about missed doses or treatments you have chosen not to use. This is valuable safety information, not a test of whether you are a “good patient”. If a treatment does not fit into daily life, the prescriber needs to know.

Questions worth asking

What is each medicine for?
How will we know whether it is working?
Which medicines are essential and which are optional?
Could any of my symptoms be side effects?
Do any of these medicines interact with my antifungal treatment?
Do I still need the same dose?
Are there blood tests, ECGs, blood-pressure checks or drug levels that I need?
Could the timing or number of doses be simplified?
If we stop something, how will it be reduced and what should I watch for?
Who should I contact if symptoms return?
Who is responsible for coordinating my overall medication plan?

Deprescribing does not mean withdrawing care

Deprescribing means the planned and supervised reduction or stopping of a medicine when its harms or burdens outweigh its likely benefits.

It should be a shared clinical decision—not an automatic attempt to cut the number of prescriptions and not a way of denying useful treatment.

Some medicines can be stopped straightforwardly. Others must be reduced gradually to prevent withdrawal effects or a dangerous return of the condition they control.

Corticosteroids are a particularly important example. Long-term systemic steroids must not be stopped suddenly because the body’s natural steroid production may have been suppressed. Some antidepressants, sedatives, opioid painkillers and other medicines may also require a carefully planned reduction.

Do not stop a prescribed medicine simply because you suspect it is unnecessary or causing a side effect. Discuss the concern with a pharmacist or prescriber and agree a safe plan.

The aim is a treatment plan that fits the person

A medication review is not only about pharmacology. It is also about daily life.

A treatment can be medically effective but still create problems if it takes hours to complete, causes intolerable side effects or prevents someone doing what matters to them. These burdens should be part of the decision alongside test results and clinical guidelines.

The central question is not:

“How can we remove as many medicines as possible?”

It is:

“Does every part of this treatment plan still have a worthwhile purpose for this particular person?”

Sometimes the answer will be to continue everything. Sometimes a dose can be reduced, monitoring improved or treatment simplified. Occasionally, a medicine that has been taken for years can be safely withdrawn.

What matters is that the complete medication list is reviewed rather than allowed to grow indefinitely—and that the person taking the medicines is fully involved in deciding what happens next.

Further information

This information is intended to support, not replace, discussions with your doctor, pharmacist or specialist team. Do not stop or change prescribed medicines without appropriate clinical advice.

by GAtherton

Medical illustration of NTM bacteria and Aspergillus fungus in lungs affected by bronchiectasis and a cavity.

NTM and aspergillosis: why are they increasingly found together?

Reviewed: 23 July 2026

People with bronchiectasis and other chronic lung conditions may sometimes be diagnosed with both a nontuberculous mycobacterial infection and a form of pulmonary aspergillosis.

This overlap appears to be recognised more often than it once was. It raises understandable questions:

Are NTM infections genuinely becoming more common?
Does NTM make someone more vulnerable to aspergillosis?
Can aspergillosis increase the risk of NTM?
Could one of the test results represent colonisation rather than active disease?
How can two complicated lung infections be treated at the same time?

The short answer is that NTM pulmonary disease is increasing in many parts of the world, and NTM and Aspergillus are being found together more frequently. However, this does not necessarily mean that one infection directly causes the other. Usually, they share the same opportunity: lungs that have already become vulnerable.

What is NTM?

Nontuberculous mycobacteria, usually shortened to NTM, are a large group of bacteria found naturally in soil, dust and water. They are related to the bacterium that causes tuberculosis, but NTM pulmonary disease is not tuberculosis.

Unlike tuberculosis, NTM infections are generally acquired from the environment rather than passed from one person to another. Person-to-person transmission has occasionally been documented in particular circumstances, especially involving some strains of Mycobacterium abscessus among people with cystic fibrosis, but this is not how most NTM lung disease is thought to develop.

Common disease-causing groups include:

Mycobacterium avium complex, often called MAC;
Mycobacterium abscessus;
Mycobacterium kansasii;
Mycobacterium xenopi.

Many people encounter NTM without becoming ill. Disease is more likely when the lungs have structural damage, mucus is not cleared effectively or immune defences are reduced.

Finding NTM does not always mean NTM pulmonary disease

NTM can occasionally be present in a respiratory sample without causing progressive disease. A diagnosis therefore cannot usually be made from one positive sputum result alone.

Clinicians bring together three types of evidence:

Symptoms, such as persistent cough, sputum, fatigue, weight loss or breathlessness;
CT changes, which may include bronchiectasis, small nodules, inflammation or lung cavities;
Microbiology, usually repeated cultures growing the same clinically significant NTM species.

Even when the accepted diagnostic criteria are met, treatment may not begin immediately. Some people have slowly changing or stable disease and may initially be monitored. The possible benefits of treatment must be balanced against its length, complexity and side effects.

Aspergillus can also affect vulnerable lungs in different ways

Aspergillus is a mould found throughout the environment. Most people breathe in its spores every day without becoming ill.

In susceptible people, it can contribute to several different conditions, including:

allergic bronchopulmonary aspergillosis (ABPA), an allergic and inflammatory response;
Aspergillus bronchitis, involving persistent infection of the airways;
chronic pulmonary aspergillosis (CPA), a slowly progressive infection that may cause cavities, pleural thickening or a fungal ball;
invasive aspergillosis, primarily affecting people with substantial immune suppression or critical illness.

As with NTM, finding Aspergillus in sputum does not automatically establish which—if any—Aspergillus-related disease is present. Symptoms, CT appearances, cultures, Aspergillus IgG or other tests and the person’s underlying health all need to be considered together.

Are NTM infections becoming more common?

International guidelines and studies from several countries report that the incidence and prevalence of NTM pulmonary disease have increased, particularly among older people and those with bronchiectasis.

However, the trend is not identical in every country or every dataset. A UK primary-care study covering 2006 to 2016 found a decline in NTM disease managed in primary care, but its authors suggested that increasingly complex cases may have shifted into specialist hospital services.

Several factors probably contribute to the wider increase in recognition:

more CT scanning and greater recognition of bronchiectasis;
more frequent and improved laboratory testing of respiratory samples;
better identification of individual NTM species;
increased awareness among respiratory clinicians;
an ageing population with more chronic structural lung disease;
more people living for longer with conditions and treatments that affect immunity.

There may also be genuine changes in environmental exposure, climate and the organisms themselves, but these influences are still being investigated. The apparent increase is therefore likely to be a mixture of more disease, better detection and changes in the population at risk.

Why do NTM and aspergillosis occur together?

The most important explanation is that both organisms take advantage of similar weaknesses in the lungs.

1. Bronchiectasis and impaired mucus clearance

Healthy airways use mucus and tiny moving hairs called cilia to trap and remove inhaled organisms. In bronchiectasis, the airways are widened and damaged. Mucus can collect, providing an environment in which bacteria and fungi can persist.

Bronchiectasis can therefore be both a cause and a consequence of repeated infection. Once a cycle of airway damage, mucus retention, inflammation and infection has developed, several different organisms may appear over time.

2. Lung cavities

Some forms of NTM pulmonary disease cause cavities in the lungs. These abnormal spaces can subsequently provide somewhere for Aspergillus to grow.

This means that NTM disease may sometimes create structural conditions that increase the later risk of chronic pulmonary aspergillosis. Studies have repeatedly identified cavitary NTM disease as an important risk factor for CPA.

The relationship can also run in the other direction. A person may already have cavities, bronchiectasis or damaged airways from CPA, tuberculosis, COPD, sarcoidosis or another condition, leaving them vulnerable to NTM.

3. Shared underlying conditions

Both conditions are more likely in people with:

bronchiectasis;
COPD or emphysema;
previous tuberculosis;
cystic fibrosis;
sarcoidosis or other causes of lung cavities;
low body weight or poor nutritional status;
immune suppression;
long-term or repeated corticosteroid exposure.

These shared risk factors can make it difficult to say that one organism caused the other. Often, both are consequences of the same damaged lung environment.

4. Treatment and immune effects

Systemic corticosteroids suppress immune responses and have been associated with increased susceptibility to both NTM disease and aspergillosis. Inhaled corticosteroids may also contribute to infection risk, particularly at higher doses, although their benefits may remain important for people with asthma, ABPA or some forms of COPD.

This does not mean that prescribed steroids should be stopped. It means that the continuing indication and dose should be reviewed periodically, especially when someone has recurrent or unusual respiratory infections.

How common is the overlap?

There is no single reliable percentage that applies to every patient group. Published estimates vary because studies involve different countries, organisms, lung diseases, definitions and levels of specialist testing.

Recent large studies suggest that chronic pulmonary aspergillosis develops in a minority of people diagnosed with NTM pulmonary disease. A Japanese database study reported CPA in 2.29% of more than 11,000 people with NTM pulmonary disease. A separate multicentre Japanese study found CPA in 3.5% of 1,304 patients. Rates can be higher in selected groups with cavities, COPD, respiratory failure, previous tuberculosis or corticosteroid exposure.

Smaller specialist studies have sometimes reported considerably higher figures, but these populations are usually not representative of everyone with NTM.

A systematic review of published NTM–Aspergillus co-infection cases found that bronchiectasis and cavities were particularly common. However, collections of published cases tend to contain the most complicated and severe examples, so they cannot tell an individual patient what is likely to happen.

Why can the two conditions be difficult to recognise?

NTM pulmonary disease and chronic pulmonary aspergillosis can cause similar problems:

chronic cough and sputum;
fatigue;
weight loss;
breathlessness;
coughing up blood;
bronchiectasis, inflammation or cavities on CT scans.

If a person with known NTM disease becomes worse, it may be assumed that the NTM has progressed. Conversely, symptoms in someone with aspergillosis may be attributed entirely to the fungal disease.

Clinicians may need to reconsider the diagnosis when:

symptoms worsen despite apparently appropriate treatment;
new or enlarging cavities appear;
a fungal ball or increasing pleural thickening develops;
weight loss, fatigue or coughing up blood becomes more prominent;
repeated samples identify another organism;
the clinical course no longer fits the original diagnosis.

This does not mean that every patient with NTM requires repeated extensive fungal testing. It means that the possibility of coexisting disease should remain in mind, particularly in people with cavities or unexplained deterioration.

Why is treatment complicated?

NTM pulmonary disease commonly requires several antibiotics for many months. Chronic pulmonary aspergillosis is usually treated with an azole antifungal such as itraconazole, voriconazole, posaconazole or isavuconazole.

Important interactions can occur between these medicines.

In particular, rifampicin and rifabutin—drugs used in many NTM regimens—can greatly reduce the amount of azole antifungal in the body. This may make the antifungal ineffective. Azoles can also affect the levels or safety of other medicines, and both treatment regimens may cause liver, digestive, visual, neurological or other adverse effects.

When both diseases require treatment, specialists may need to decide:

which condition is currently causing the greatest harm;
whether both need treatment immediately;
whether treatment should be simultaneous or sequential;
whether an alternative NTM regimen is possible;
how drug levels, liver tests, hearing, vision and heart rhythm should be monitored;
how much treatment burden the person can reasonably manage.

These decisions usually benefit from input from respiratory, infectious-disease, microbiology and specialist pharmacy teams. Patients should not stop or alter either treatment without discussing it with the prescribing team.

What can patients do?

People living with bronchiectasis, NTM or aspergillosis can help their team by:

providing sputum samples when requested;
reporting new weight loss, coughing up blood or a sustained change in symptoms;
keeping an up-to-date list of medicines and supplements;
asking whether new medicines interact with existing antifungals or antibiotics;
attending blood tests, drug-level monitoring and other safety checks;
continuing an agreed airway-clearance routine;
asking which organism the team currently believes is causing disease rather than simply being present.

Useful questions for an appointment include:

Do my results show NTM in a sample, or do I meet the criteria for NTM pulmonary disease?
Which NTM species has been identified, and was it found more than once?
Is there evidence of active aspergillosis, or only exposure or colonisation?
Have my CT scans changed over time?
Which condition is thought to be causing my current symptoms?
Do any of my medicines make treating both conditions more difficult?

The main message

NTM pulmonary disease is being diagnosed more frequently in many parts of the world, and its overlap with aspergillosis is increasingly recognised.

The relationship is not usually as simple as one infection directly causing the other. Bronchiectasis, cavities, impaired mucus clearance, immune changes and some treatments can create a shared vulnerability to both environmental organisms.

Finding either NTM or Aspergillus in a sample does not automatically prove active disease. The important task is to combine symptoms, repeated microbiology, blood tests and changes on CT—and then decide which condition, if either, needs treatment.

When both diseases are active, treatment can be challenging, but recognising the overlap allows specialist teams to plan monitoring, manage drug interactions and avoid attributing every change to a single organism.

Further information and evidence

This information is intended to support, not replace, discussions with your healthcare team. Do not stop or change antibiotics, antifungal medicines or corticosteroids without advice from the relevant prescriber.

by GAtherton

Older woman using oxygen watches a bird in her garden while holding a cup at home.

When chronic illness changes your life: loss, acceptance and finding what still matters

Reviewed: 23 July 2026

When health declines gradually, there may be no single moment when life changes. Instead, things are lost one by one: energy, independence, confidence, work, hobbies, relationships or the freedom to make plans without first consulting the body.

People living with chronic illness sometimes describe reaching a point where they wonder:

“Am I still living—or am I just existing?”

It is a difficult question, but not an unusual or shameful one. It does not necessarily mean that someone has given up. It may mean they are exhausted, grieving for the life they expected to have, or struggling to find meaning within circumstances they did not choose.

Chronic illness can involve real grief

We usually associate grief with bereavement, but people can also grieve for parts of their own life that have been lost.

This might include:

the person they were before becoming unwell;
work or responsibilities that gave them purpose;
physical abilities and independence;
spontaneity and freedom;
roles within the family;
plans for retirement, travel or relationships;
the expectation that treatment would restore their previous health.

These are genuine losses. They may not be visible to other people and there may be no ceremony or recognised period of mourning. The person is often expected to adapt and continue while the losses are still happening.

This is one reason gradual decline can be so emotionally difficult: each new change may bring back grief that seemed to have been settled.

Adjustment is not a straight line

Coming to terms with chronic illness is sometimes described as if it were a destination. Once we have “accepted” the illness, we are expected to remain calm and positive about it.

Real adjustment rarely works that way.

A person may feel accepting one week and angry the next. They may manage well until an infection, scan result or cancelled outing reveals another limitation. A good day may create hope; a setback may revive fear and sadness.

This movement between coping and struggling does not mean that adjustment has failed. It is often part of adapting to a situation that continues to change.

Acceptance does not mean liking what has happened

The word acceptance can sound passive. People may hear it as:

stop fighting;
expect less;
do not complain;
be grateful things are not worse.

But acceptance does not require approval, optimism or surrender.

It can simply mean recognising what is true at this moment, so that limited energy is not spent constantly fighting the fact that life has changed. It may allow someone to ask a more useful question:

“Given where I am now, what would make life more bearable, meaningful or enjoyable?”

Acceptance can exist alongside treatment, rehabilitation, advocacy and hope. A person can acknowledge present limitations while still asking whether symptoms could be better controlled or whether more support is available.

Quality of life is personal

From the outside, people often judge quality of life by visible activity: going out, travelling, working or managing without help.

But quality of life cannot be measured only by how much a person can do.

For one person, independence may matter most. For another, it may be relationships, comfort, creativity, faith, learning, nature, humour or remaining involved in family life. Someone whose physical world has become smaller may still experience closeness, curiosity, pleasure and purpose.

Equally, we should not romanticise severe illness. Pain, breathlessness, fatigue, isolation and dependence can genuinely make life very difficult. Telling someone to “focus on the positives” may leave them feeling even less understood.

Both things can be true: life may contain profound loss, and some parts of it may still be worth protecting.

When every day is organised around illness

Life can begin to feel like existing when most of the day is consumed by:

taking medicines and completing treatments;
clearing mucus or managing oxygen;
attending appointments and chasing results;
recovering from ordinary activities;
watching for signs of another infection;
trying to obtain care, benefits or practical support.

These tasks may be necessary, but they can allow the role of “patient” to take over almost every other identity.

It may help to ask whether treatment routines can be simplified or arranged differently. A pharmacist, respiratory physiotherapist, specialist nurse, GP or hospital clinician may be able to review the burden of treatment as well as its medical purpose.

The question is not only “Is each treatment justified?” but also “What is the combined effect of all this treatment on the person’s life?”

Creating room for something that is not illness

When energy is very limited, advice to “take up a hobby” can feel unrealistic or dismissive. The aim is not to fill every day with activity. It is to preserve some experience of choice, identity or connection.

That might be something very small:

choosing when and where to rest;
listening to music or an audiobook;
sitting outside or noticing a changing season;
having one conversation that is not about illness;
helping another person with knowledge or encouragement;
following a subject that still creates curiosity;
altering an activity so it remains possible in a different form.

Small does not mean meaningless. When illness has removed many choices, even modest acts of agency can matter.

It may be the environment—not the person—that needs to change

People are sometimes encouraged to adjust psychologically when practical changes could improve their lives.

Before concluding that someone must simply accept a restricted existence, it is worth asking:

Are pain, breathlessness, coughing, fatigue and sleep being treated as well as possible?
Could pulmonary rehabilitation, physiotherapy or occupational therapy help?
Is anxiety making breathlessness or activity more difficult?
Would mobility equipment, home adaptations or social care increase independence?
Is the treatment schedule unnecessarily burdensome?
Is loneliness contributing to the loss of meaning?
Could financial, employment or benefits advice relieve some pressure?
Has the person’s own definition of a worthwhile life been discussed?

Loss of quality of life should not automatically be treated as an inevitable consequence of disease. Sometimes there are neglected symptoms or unmet needs that can be addressed.

Sadness is understandable—but depression deserves help

Sadness, anger and grief can be natural responses to declining health. They are not automatically signs of mental illness.

However, chronic physical illness can increase the risk of depression. It can be difficult to recognise because fatigue, poor sleep and reduced activity may also result from the physical condition.

Signs that additional help may be needed include:

persistent low mood or hopelessness;
losing interest or pleasure in nearly everything;
feeling worthless, guilty or like a burden;
withdrawing from other people more than usual;
being unable to imagine anything improving;
thinking that life is not worth living;
thinking about death, self-harm or suicide.

These feelings should not be dismissed as an inevitable part of chronic illness. A GP or another trusted member of the healthcare team can help distinguish understandable distress from depression and discuss appropriate support.

Asking “what matters to you?”

Healthcare conversations often focus on test results, medicines and what is clinically possible. These are important, but they do not tell the whole story.

A different conversation begins with questions such as:

What matters most to you now?
What part of your life are you most afraid of losing?
Which symptoms or restrictions are hardest to live with?
What would make an ordinary day feel better?
What are you continuing treatment for?
Which burdens of treatment are becoming too great?
Who do you want involved in decisions about your care?

The answers may change over time. That is why discussions about quality of life should not happen only once or only when someone becomes extremely unwell.

Could supportive or palliative care help?

Palliative care is often misunderstood as care provided only during the final days of life. Its broader purpose is to improve quality of life when someone is living with a serious or progressive illness.

It can include support with physical symptoms such as pain and breathlessness, as well as emotional, social and spiritual concerns. In appropriate circumstances, it can be provided alongside active treatment rather than replacing it.

Not everyone with chronic illness needs specialist palliative care. However, when symptoms remain severe, treatment is becoming burdensome or quality of life has deteriorated substantially, it may be reasonable to ask the healthcare team what supportive services are available.

This is not giving up. It is asking the health service to pay attention not only to how long someone lives, but also to how they are living.

A worthwhile life may look different from the life we planned

There is no simple answer to the question “When is life just existing?” Only the person living that life can describe what it feels like from within.

But the question should invite conversation, not silence.

It may reveal uncontrolled symptoms, depression, loneliness, exhaustion, loss of identity or a need for different priorities in care. It may also help someone identify small but important parts of life that remain their own.

Coming to terms with declining health does not mean pretending that everything is acceptable. It means making room for grief while continuing to ask what might still be changed, supported or protected.

A meaningful life after illness may not look like the life once imagined. It can be smaller in some ways and still contain connection, dignity, choice and moments that matter.

If life no longer feels worth living

If you are thinking about harming yourself, feel unable to keep yourself safe or believe there is an immediate danger, seek urgent help now through emergency services or the nearest emergency department.

If there is no immediate danger but life regularly feels pointless or unbearable, tell someone. This could be your GP, another healthcare professional or a trusted person in your life. You do not have to wait until you are in crisis before asking for help.

Further information

This information is intended to support, not replace, discussions with your healthcare team.

by GAtherton

Two older women having a supportive conversation over coffee, one wearing oxygen tubing

Why talking to someone who understands can make chronic illness feel more manageable

Reviewed: 23 July 2026

Living with a long-term illness can be surprisingly lonely. This can remain true even when we have supportive family, friends and healthcare professionals around us.

Sometimes, however, a conversation with another person who has been through something similar changes how we feel. The illness has not disappeared and no practical problem may have been solved—but its emotional weight feels a little lighter.

Why can talking to someone who understands make such a difference?

Being understood without having to explain everything

People who have not experienced chronic illness may struggle to understand how deeply it affects everyday life. They may see individual appointments, infections or changes in treatment, but not the continuous effort taking place in the background.

This can include:

planning life around symptoms and energy levels;
worrying about the next infection or deterioration;
managing complicated treatments and side effects;
losing confidence in what the body will allow;
feeling guilty about cancelling plans or relying on other people;
trying to look well when we do not feel well.

Another person with a long-term illness may recognise these experiences immediately. We do not need to persuade them that fatigue is different from ordinary tiredness, or explain why a seemingly small change in symptoms can cause anxiety.

That recognition can be a relief in itself: someone else understands, and I am not alone in this.

Putting experience into words helps us process it

Illness can leave us carrying a mixture of fear, anger, sadness, frustration and uncertainty. When these feelings remain tangled together, they can be difficult to understand.

Talking encourages us to turn experience into a story: what happened, how it affected us and what we think or feel about it. This does not make the problem imaginary or suggest that it can be “talked away”. Instead, giving words to an experience can make it feel less chaotic and easier to examine.

A helpful listener may also reflect something back to us that we have not recognised ourselves. We may hear that we have coped with more than we realised, that a reaction was understandable, or that a problem we blamed ourselves for is a common consequence of living with illness.

Shared experience makes our reactions feel more normal

People with chronic illness sometimes wonder whether they are coping badly. They may feel they should be more positive, more productive or more grateful. They may compare themselves with the person they were before becoming ill—or with healthier people around them.

Hearing someone else describe similar fears, frustrations or losses can reassure us that our response is human rather than a personal failure.

This is sometimes called validation. It does not mean that another person agrees with everything we say. It means they recognise that our feelings make sense in the context of what we are experiencing.

We learn things that clinical appointments cannot always teach us

Healthcare professionals provide essential diagnosis, treatment and clinical advice. People living with an illness develop a different kind of expertise: knowledge of what it is like to manage that condition from one day to the next.

A fellow patient may understand practical questions such as:

How do you organise treatments without allowing them to take over the day?
How do you explain an unpredictable illness to family or an employer?
What helps when an appointment does not go as hoped?
How do you cope with waiting for results?
How do you adjust plans without feeling that illness has won?

Other patients cannot tell us which treatment is medically right for us. Individual diagnoses, medicines and risks differ. Nevertheless, their experience can provide useful questions to take back to our own healthcare team.

Helping someone else can help us too

Peer support is not necessarily divided into one person who helps and another who receives help. Often, both people benefit.

Chronic illness can make someone feel dependent or defined by what they can no longer do. Sharing hard-earned knowledge with another person restores a sense that their experience has value. Something difficult they have lived through may now help somebody else feel less frightened or alone.

This reciprocity—being able both to receive and to contribute—is one reason peer relationships can feel different from professional support.

It does not have to be a group

The phrase “peer support” can suggest a formal meeting or a large circle of people discussing their feelings. That works well for some people, but it is not the only form of support.

Helpful contact might be:

a private conversation with one other person;
a telephone or video call;
an informal conversation before or after a patient meeting;
reading and contributing to a carefully moderated online community;
exchanging messages with someone facing a similar problem;
simply listening until we feel ready to speak.

NHS England notes that peer support can happen one-to-one or in groups, in person, by telephone or online. Sometimes one conversation may be enough to help someone begin to feel better.

Not every shared experience will match our own

Finding someone with the same diagnosis does not mean that their illness will behave in the same way. People may have different underlying conditions, symptoms, test results and responses to treatment.

This is especially important in complex diseases such as aspergillosis. A treatment that was helpful, ineffective or difficult for one person may affect another person quite differently.

Personal experiences are valuable, but they are not predictions. They should help us feel informed and supported—not pressured into making the same choices.

When talking leaves us feeling worse

Peer support is not automatically helpful simply because people share a diagnosis. Some conversations can increase anxiety, particularly when they involve frightening stories, competition over who is most unwell, criticism of treatment choices or confident medical advice based on one person’s experience.

It is reasonable to step back when a conversation or group repeatedly leaves us feeling frightened, judged, overwhelmed or hopeless.

Healthy peer support usually includes:

listening as well as speaking;
respect for different experiences and choices;
permission not to share personal information;
recognition that one person’s experience may not apply to another;
clear boundaries around medical advice;
moderation or support when difficult discussions arise.

Sometimes we need distraction, ordinary conversation or time alone rather than another discussion about illness. That is not a rejection of support. It is part of recognising what we need at a particular moment.

Peer support and professional support have different roles

A fellow patient may offer understanding, companionship and practical experience, but peer support does not replace healthcare or psychological treatment.

Professional help may be particularly important if distress is persistent, sleep and daily functioning are being affected, anxiety is becoming difficult to control, or life no longer feels worthwhile.

A GP or another member of the healthcare team can help someone explore appropriate support. This might include counselling, psychological therapy, social prescribing, rehabilitation, palliative care or help from a specialist service. Palliative care is not restricted to the final stages of life; it can also help people living with serious illness manage symptoms and protect quality of life.

Sometimes the greatest relief is simply not being alone

Talking does not cure chronic illness. It does not restore lost health or provide an easy answer to every difficult decision.

What it can do is change the experience from “I am facing this by myself” to “someone else understands what this is like.”

That may sound like a small change, but when illness has become a constant presence, being heard and understood can make it feel more bearable. Sometimes one honest conversation is enough to remind us that we are still connected to other people—and that our experience matters.

Further information

This information is intended to support, not replace, discussions with your healthcare team. If you are experiencing severe emotional distress or feel that you may harm yourself, seek urgent help through your local emergency or crisis service.

by GAtherton

A man and woman sitting together at home in a quiet, supportive conversation.

Adjusting to a lifelong diagnosis: emotional support for people with aspergillosis and those close to them

Being diagnosed with a chronic illness can affect much more than physical health. Even when receiving a diagnosis brings relief or finally explains years of symptoms, it may also bring fear, grief, anger and uncertainty about the future.

These reactions are not a sign of weakness, nor do they mean that your physical symptoms are “all in your head”. They are understandable responses to being told that a health condition may require long-term treatment, monitoring and changes to everyday life.

There is no single “correct” response to diagnosis

People respond to an aspergillosis diagnosis in very different ways. You might feel:

relieved that your symptoms finally have an explanation;
shocked or emotionally numb;
frightened about treatment or the future;
angry about delays in receiving a diagnosis;
grief for the health, independence or plans you expected to have;
frustrated that other people do not understand the condition;
guilty about needing help from family or friends;
anxious about symptoms, test results, scans or appointments.

These feelings may come and go. They may become stronger during a flare-up, medication change, hospital admission or period of uncertainty. Some people struggle immediately after diagnosis; others cope initially and find that the emotional impact arrives later.

What can make aspergillosis particularly difficult?

The emotional effects of chronic illness are not unique to aspergillosis, but people with aspergillosis can face some particular pressures:

The diagnosis may follow months or years of unexplained symptoms.
Aspergillosis is uncommon, and many healthcare professionals and members of the public know little about it.
The course of the illness can be difficult to predict.
Symptoms such as fatigue, breathlessness, pain and persistent coughing can restrict daily life while remaining largely invisible to other people.
Treatment may continue for months or years and can cause troublesome side effects.
Repeated blood tests, scans and appointments can create cycles of anxiety.
People may become worried about mould, gardening, compost or the safety of their home.
Illness may affect employment, finances, relationships, independence and social life.

It is possible to be grateful for treatment and support while also feeling angry, frightened or exhausted by the situation. Those feelings can exist together.

Adjustment does not mean giving up

People are sometimes told that they need to “accept” their condition. This can sound as though they should approve of what has happened, stop hoping for improvement or remain positive all the time.

Adjustment means something more realistic: gradually learning how to live alongside the condition while retaining the parts of life, relationships and identity that matter to you. It may involve changing expectations, finding different ways to do things and recognising what is—and is not—within your control.

This is rarely a straight path. A person may feel well adjusted for months and then struggle again following a setback. Needing further support does not mean that previous progress has been lost.

When should you ask for help?

Distress following a major diagnosis can be a normal response, but support may be helpful if anxiety, low mood or fear:

persists or continues to worsen;
interferes with sleep, eating, relationships or everyday activities;
makes it difficult to attend appointments or take medication;
causes you to withdraw from other people or activities you value;
leads to repeated checking, reassurance-seeking or overwhelming fear about symptoms;
leaves you feeling hopeless or unable to cope.

You do not need to wait until you reach a crisis. You also do not need a formal mental-health diagnosis before asking for support.

A pathway to support

1. Tell someone in your healthcare team

You could speak to your GP, specialist nurse, hospital doctor, pharmacist or another healthcare professional you trust. Explain how the condition is affecting your life emotionally as well as physically.

It may help to say something direct, such as:

“Since receiving this diagnosis, I have been struggling with anxiety and low mood. It is affecting my sleep and daily life. What psychological support is available to help me adjust to living with a long-term condition?”

Your GP can also consider whether symptoms such as poor sleep, agitation, low mood or extreme fatigue might be affected by medication, hormone problems or another physical cause. Steroids and some other medicines can affect mood and sleep, so significant changes should be discussed with a clinician rather than assumed to be purely psychological.

2. Ask about NHS Talking Therapies

In England, adults can usually refer themselves to NHS Talking Therapies for anxiety and depression without first seeing a GP. You do not need to have an existing mental-health diagnosis.

Some local services have therapists or programmes specifically for people living with long-term physical health conditions. When making a referral, explain that your anxiety or low mood is connected to living with chronic respiratory illness.

Services and referral routes differ in Scotland, Wales and Northern Ireland. Your GP or local NHS website can direct you to the appropriate service.

3. Ask about clinical health psychology

Clinical health psychologists specialise in the relationship between physical illness, emotional wellbeing and behaviour. They may help people cope with diagnosis, treatment, uncertainty, loss of function, medical trauma or fear of deterioration.

These services are not available in every area and referral criteria vary. Ask your hospital team or GP whether there is a clinical health psychology, physical health psychology or long-term conditions psychology service locally.

4. Use peer support

Speaking to other people who understand aspergillosis can reduce isolation and provide practical reassurance. The National Aspergillosis Centre supports a range of patient support groups and meetings.

Peer support is valuable, but it does not replace professional help when distress is severe or persistent. Online discussions can also increase anxiety if they expose you to frightening experiences that do not reflect your own condition. It is reasonable to step away or limit how much you read.

5. Involve family and friends

People close to you may want to help but may not understand what you need. It can be useful to tell them whether you want practical help, company, information, or simply someone to listen without immediately trying to solve the problem.

Family members and carers may also need support. Chronic illness changes shared routines and plans, and its emotional effects are rarely confined to one person.

If you are supporting someone with aspergillosis

A diagnosis of chronic illness can also affect partners, relatives and close friends. You may be worried about the person’s health, uncertain about the future or unsure what to say. You may also find yourself taking on new practical or caring responsibilities.

You do not need to have all the answers. Often, the most useful starting point is to listen and acknowledge what the person is experiencing.

Ask what kind of support they want

Different people need different things—and those needs may change from day to day. Rather than assuming, you could ask:

“Would you like me to listen, or would you like help thinking about what to do?”
“Would it help if I came to the appointment with you?”
“Is there one practical thing I could take off your plate this week?”
“Do you want to talk about it, or would you prefer some ordinary company?”

Some people want to learn everything about their condition immediately. Others need time before they can take in more information. Try to follow their pace rather than forcing conversation or reassurance.

What may not help

Comments intended to be encouraging can sometimes leave a person feeling unheard. Try to avoid:

insisting that they must remain positive;
comparing their illness with somebody else’s;
repeatedly telling them not to worry;
offering unproven treatments or alarming information found online;
assuming that looking well means they feel well;
taking over decisions they are still able to make themselves.

It is usually more helpful to acknowledge uncertainty honestly: “I can see why this is frightening. You do not have to deal with it alone.”

If you are worried about their mental health

You may notice that the person has become increasingly withdrawn, hopeless, distressed or unable to manage everyday life. Choose a quiet moment and describe what you have noticed without criticising or diagnosing them:

“You have seemed very low and overwhelmed recently, and I’m worried about you. Could we talk to your GP or someone from your healthcare team together?”

It is reasonable to ask directly whether someone is thinking about harming themselves or feels that life is not worth living. Asking the question does not put the idea into their head. Listen calmly, take the answer seriously and seek urgent help if necessary.

If there is an immediate risk to life, call 999. If urgent mental-health help is needed in England, call NHS 111 and select the mental-health option. Samaritans can be contacted free at any time on 116 123.

Look after your own wellbeing too

Supporting someone with chronic illness can bring fear, exhaustion, frustration, guilt and grief. These feelings do not mean that you care any less.

Try to maintain your own relationships, interests, rest and healthcare. Speak to your GP if caring responsibilities are affecting your mental health. You may also be entitled to a carer’s assessment through your local council.

Support does not have to come only from relatives. Friends can help by remaining in contact, continuing to include the person and accepting that plans may sometimes need to change.

Small things that may help during adjustment

Self-care cannot remove the realities of chronic illness, but some approaches can make the emotional burden more manageable:

Learn about the condition gradually from reliable sources rather than trying to understand everything at once.
Write down questions before appointments.
Keep a record of symptoms and treatment without allowing monitoring to occupy the entire day.
Maintain regular contact with people who make you feel supported.
Plan enjoyable or meaningful activities within your available energy.
Use pacing to avoid repeated cycles of overactivity and exhaustion.
Notice when online searching or repeated checking is making anxiety worse.
Allow yourself to have difficult days without interpreting them as failure.

The NHS Every Mind Matters website has further guidance on mental health and physical illness.

If you need urgent help

If you need urgent help for your mental health in England, call NHS 111 and select the mental-health option, or ask for an urgent GP appointment. The NHS provides more information about where to get urgent mental-health help.

If you or somebody else is in immediate danger, call 999 or go to A&E.

You can also call Samaritans free on 116 123, at any time of day or night, from anywhere in the UK or Ireland.

If you live outside the UK, use your local emergency number or mental-health crisis service.

Mental-health support is part of living well with physical illness

Asking for psychological support does not undermine the reality or seriousness of aspergillosis. Physical illness and emotional wellbeing influence one another, and both deserve attention.

A diagnosis may become part of your life, but it does not have to become your entire identity. With time, appropriate medical care and the right emotional support, many people find ways to live meaningful lives alongside an uncertain or lifelong condition.

Important: This article provides general information and is not a substitute for individual medical or mental-health advice. Speak to a healthcare professional if you are concerned about your mood, anxiety, medication or ability to cope.

by GAtherton

Illustration of inhaled itraconazole being delivered into the lungs as a potential treatment for ABPA

Aspergillosis Weekly Research Update

Inhaled itraconazole shows promise for ABPA

Week ending 21 July 2026

This week brought encouraging early results for an inhaled form of itraconazole,
alongside new research into chronic pulmonary aspergillosis (CPA), lung surgery
and the effects of influenza on our antifungal immune defences.

Paper of the week: inhaled itraconazole for ABPA

A phase 2 clinical trial has produced promising results for an inhaled form of
itraconazole in adults with asthma and allergic bronchopulmonary aspergillosis
(ABPA).

Itraconazole is normally taken by mouth. It can help reduce the amount of
Aspergillus in the airways, but oral treatment can cause side effects,
interact with other medicines and produce unpredictable drug levels.

PUR1900 is a dry-powder form of itraconazole designed to deliver the drug
directly into the lungs. The aim is to produce higher concentrations in the
airways while reducing the amount of itraconazole circulating through the rest
of the body.

What did the trial find?

The trial included 43 adults with asthma and ABPA. Participants received either
20 mg or 40 mg of inhaled itraconazole, or a placebo, once daily for 16 weeks.

Compared with placebo, people receiving the 40 mg dose experienced:

An average placebo-adjusted improvement in FEV₁ of approximately 0.28 litres.
Better asthma-control questionnaire scores.
A reduction in total IgE, a marker associated with allergic activity.
No serious adverse events during the trial.

The lower 20 mg dose did not produce the same pattern of improvement.

What does this mean?

These are encouraging results because delivering itraconazole directly into the
lungs could potentially reduce some of the toxicity and drug interactions
associated with oral treatment.

However, this was a small exploratory study. Only nine participants received
placebo, and the study did not have one prespecified primary outcome against
which success or failure would be judged. The results therefore need confirmation
in a larger phase 3 trial before inhaled itraconazole could become a routine
treatment for ABPA.

PUR1900 remains an investigational treatment and is not currently available on
prescription.

Read the study on PubMed
View the journal article

Chronic pulmonary aspergillosis and sarcoidosis

A new clinical review examines the difficult relationship between pulmonary
sarcoidosis and chronic pulmonary aspergillosis.

Advanced sarcoidosis can cause fibrosis, cavities and structural changes in the
lungs. These damaged areas may provide an opportunity for Aspergillus
to grow and CPA to develop.

The two conditions can be difficult to separate because both may cause:

Increasing breathlessness.
Persistent coughing.
Fatigue and weight loss.
Changes on chest scans.
Declining lung function.

This creates an important treatment dilemma. Corticosteroids and other
immune-suppressing medicines may be needed to control active sarcoidosis, but
they can also make fungal infection more difficult to control.

The practical message is that deterioration in someone with fibrotic or cavitary
sarcoidosis should not automatically be assumed to represent worsening
sarcoidosis. CPA may need to be investigated before immunosuppressive treatment
is increased.

This article is a review of existing evidence rather than a new clinical trial,
but it draws attention to an important and sometimes overlooked association.

Read the review on PubMed
View the journal article

Could smaller operations preserve more lung in CPA?

Surgery can sometimes remove localised CPA, particularly a simple aspergilloma
or an affected part of the lung causing repeated bleeding. Surgery is not
suitable for everyone because many people with CPA already have reduced lung
function or extensive underlying lung disease.

A 15-year study examined 151 people with CPA who underwent video-assisted
thoracoscopic surgery, commonly called keyhole lung surgery. Researchers compared
removal of an entire lung lobe with smaller, sublobar resections that preserved
more healthy lung tissue.

People receiving a smaller resection experienced less loss of lung function.
Overall complication rates were similar in the two surgical groups, as were the
observed recurrence rates. Across all participants with sufficient follow-up,
CPA recurred in approximately 11%.

CPA operations remained more technically difficult than comparable lung-cancer
surgery. Severe adhesions and lesions larger than 3 cm were associated with a
greater risk of postoperative complications.

The study suggests that a lung-sparing operation may be possible for carefully
selected people with localised disease. It does not prove that a smaller operation
is suitable for everyone: the study was retrospective, conducted at one centre
and did not randomly assign people to the different surgical approaches.

Read the study on PubMed
Read the full open-access article

Research corner: why can influenza increase the risk of aspergillosis?

Influenza-associated pulmonary aspergillosis, or IAPA, is a serious complication
that can develop in people admitted to intensive care with severe influenza.
It can occur even when someone did not previously have the traditional risk
factors for invasive fungal infection.

Two linked laboratory studies have investigated how influenza changes the immune
environment inside the lungs.

One study found widespread changes in lung immune cells, including functional
problems in particular groups of neutrophils. Neutrophils normally play a central
role in recognising and killing invading Aspergillus.

The second study examined a signalling molecule called interleukin-27, or IL-27.
Its results suggest that IL-27 may help protect against IAPA by limiting an
unhelpful type-2 immune response while strengthening antifungal activity.

Together, the studies help explain why recovery from influenza is not simply a
return to normal immunity. The infection can leave temporary defects in the
lungs’ ability to control fungi.

These studies used experimental models and have been released as preprints,
meaning they have not yet completed formal peer review. They do not currently
change how IAPA is diagnosed or treated.

Read the neutrophil study
Read the IL-27 study

What are this week’s main messages?

Inhaled itraconazole produced promising improvements in a small phase 2 ABPA
trial, particularly at the higher dose.
Larger trials are required before inhaled itraconazole can become a routine
treatment.
CPA should be considered when someone with fibrotic or cavitary sarcoidosis
experiences unexplained deterioration.
Smaller lung resections may preserve more lung function in carefully selected
people with localised CPA.
Influenza can disrupt several parts of the lung’s antifungal immune response,
helping to explain the development of IAPA.

by GAtherton

A patient speaking confidently with a healthcare professional while a companion takes notes during an appointment.

Speaking up about your healthcare: self-advocacy and independent advocacy


Last reviewed: July 2026

If you have concerns about how your condition is being investigated or managed, it can sometimes feel difficult to make yourself heard. This may be especially challenging with a rare condition such as aspergillosis, where healthcare professionals outside specialist services may have limited experience of the disease.

Advocacy means helping your views, questions and wishes to be understood. You may be able to advocate for yourself, ask a trusted person to support you, or use an independent advocacy service.

Speaking up does not mean being confrontational. It means working with your healthcare team to understand your care, participate in decisions and raise concerns when something does not seem right.

Before an appointment

A little preparation can make it easier to explain what matters most to you.

Write down your two or three most important questions.
Make a brief timeline of new symptoms, treatment changes or important events.
Bring an up-to-date medication list, including inhalers, steroids, supplements and non-prescription medicines.
Record how the condition is affecting everyday life, not only individual symptoms.
Decide what you hope will happen next—for example, a clearer explanation, a medication review or a follow-up plan.
Ask whether a family member, friend or carer can attend with you.

You can say at the beginning of the appointment:

“I have three things I particularly need to understand today. Can we make sure we cover them before the appointment ends?”

Questions you are entitled to ask

You can ask your healthcare professional to explain:

what diagnosis they think you have and how certain they are;
what your test or scan results mean;
what the available treatment options are;
the expected benefits, risks and side effects of treatment;
what monitoring will be needed;
what alternatives are available;
what might happen if you decide not to have a treatment;
who to contact if symptoms or side effects worsen;
when your condition and treatment will next be reviewed.

If an explanation is unclear, it is reasonable to ask for it to be repeated in plain language. Before leaving, try to confirm the plan:

“Can I check that I have understood? The next step is … and I should contact … if … happens.”

Contacting your clinical team between appointments

Your clinic letter or hospital correspondence may include contact details for the consultant’s secretary or specialist nursing team. When contacting them:

include your full name, date of birth and NHS number if known;
briefly explain the problem and when it began;
state whether it is getting worse;
say what response you need—for example, advice, an earlier review or clarification of the treatment plan;
keep a record of when you contacted the service.

Email can be useful because it creates a written record, but it may not be monitored continuously. If the matter is urgent, follow the urgent-care instructions provided by your clinical team rather than relying on email.

If you are deaf, have hearing loss or find telephone communication difficult, ask the service to record your communication needs and offer an accessible way to contact you. You may also be able to use Relay UK, which replaced the former Next Generation Text Service.

Ask someone you trust to support you

A family member, friend or carer can:

help you prepare questions;
take notes during an appointment;
remind you about points you wanted to raise;
help explain how the condition affects you at home;
support you emotionally;
help follow up agreed actions afterwards.

Healthcare professionals will normally need your permission before discussing confidential information with another person. Tell the team clearly if you want somebody involved and ask how your consent should be recorded.

Your supporter should help communicate your wishes rather than make decisions for you unless they have the appropriate legal authority.

If you are worried that something has been missed

Explain your concern as specifically as possible. For example:

“My symptoms have become worse despite following the treatment plan. I am concerned that something may have changed. Could you explain what has been ruled out and whether I need further assessment?”

You can ask whether your case should be discussed with another clinician, reviewed by a multidisciplinary team or referred for specialist advice. You can also ask about a second opinion, although access and referral arrangements vary and there is not always an automatic right to one.

Do not wait for a routine complaints process if you develop severe or rapidly worsening symptoms. Use the urgent contact instructions provided by your healthcare team, NHS 111 or emergency services as appropriate.

Contacting PALS

If you cannot resolve a concern directly with the clinical team, contact the Patient Advice and Liaison Service at the hospital providing your care.

PALS can:

help resolve concerns informally;
explain how the hospital’s services work;
help identify the right person or department to contact;
provide information about the NHS complaints process;
tell you where to find independent support.

PALS is part of the NHS organisation, so it is helpful for resolving problems but is not the same as an independent advocate.

What is an independent advocate?

An independent advocate can help you understand information, communicate your views and participate in decisions about your care. Depending on the service and your circumstances, an advocate may:

help you prepare for meetings or assessments;
help you write letters or make phone calls;
attend meetings with you;
help you understand different options;
support you during a complaint.

An advocate does not make decisions for you, provide medical advice or tell you what choice to make.

In some circumstances, a local council must arrange advocacy for a person who has substantial difficulty understanding or participating in decisions and has nobody appropriate to support them. The NHS provides more information about finding someone to speak up for you.

Finding an advocate

Advocacy provision varies between areas. Possible starting points include:

your local council’s adult social care service;
the hospital’s PALS team;
your local Healthwatch;
an independent NHS complaints advocacy provider;
disability or condition-specific organisations.

You can find your local Healthwatch and ask which organisation currently provides advocacy in your area.

Named advocacy providers change between areas and over time, so it is safer to check locally rather than assume that one national organisation covers your location.

If informal efforts do not resolve the problem

Keep a brief written record of:

what happened;
the dates of appointments and contacts;
who you spoke to;
what was agreed;
what remains unresolved;
what outcome you are seeking.

If direct discussion and PALS do not resolve the concern, you can use the NHS complaints process. In England, free NHS complaints advocacy may be available to help you prepare a complaint and attend meetings. NHS England provides information about feedback and complaints about NHS services.

If you reach the end of the NHS complaints process in England and remain dissatisfied, you may be able to ask the Parliamentary and Health Service Ombudsman to review the complaint.

Complaints and advocacy arrangements differ in Scotland, Wales and Northern Ireland, so use the health-service guidance for the country in which you receive care.

Being persistent without carrying the whole burden yourself

If an important question remains unanswered, follow up calmly and clearly. Refer to previous contacts, explain why the issue matters and state what response you need.

However, patients should not have to manage complex healthcare systems entirely alone. If repeated attempts are getting nowhere, involve PALS, your GP, an independent advocate or another appropriate service rather than feeling that you simply have to “push harder”.

A simple advocacy checklist

What is my main concern?
What evidence or examples can I provide?
What do I need explained?
What outcome am I asking for?
Who is responsible for the next action?
When should I expect a response?
Who can support me if the problem remains unresolved?

Important: This information is primarily about NHS care in England. It provides general guidance and is not a substitute for individual medical or legal advice. Seek urgent medical help if symptoms are severe or rapidly worsening.

by GAtherton

Illustration of lungs, a DNA strand and Aspergillus spores representing research into CFTR gene variants and ABPA

Carriers of cystic fibrosis may be at greater risk for allergic bronchopulmonary aspergillosis

Research suggests that some variants in the CFTR gene may be more common among people with allergic bronchopulmonary aspergillosis (ABPA). However, the connection remains uncertain, and carrying one CFTR variant does not mean that someone has cystic fibrosis.

Reviewed and updated: 22 July 2026

What is the CFTR gene?

The CFTR gene provides instructions for making a protein that helps regulate the movement of salt and water across cell surfaces. This contributes to keeping mucus in the lungs and other organs at the correct consistency.

Cystic fibrosis (CF) is usually caused by disease-causing variants in both copies of the CFTR gene—one inherited from each parent. A person with only one disease-causing variant is generally described as a CF carrier and does not have cystic fibrosis.

Nevertheless, research increasingly suggests that some carriers may have a slightly greater susceptibility to certain respiratory conditions. This does not mean that every carrier will develop lung disease.

What did the original ABPA study find?

Researchers at the National Aspergillosis Centre and Manchester Centre for Genomic Medicine studied 156 people with ABPA who underwent genetic screening.

They reported that 18 people—11.5% of the group—had at least one detected CFTR variant. This was higher than the estimated carrier frequency used for comparison at the time. Two patients had variants in both copies of the gene and were subsequently diagnosed with cystic fibrosis.

The researchers suggested that CFTR testing and genetic counselling might be appropriate for selected people with ABPA.

However, this was a retrospective study conducted at a specialist referral centre. The genetic tests used did not identify every possible CFTR variant, and the study could not establish that carrying one variant caused ABPA.

Read the original study in the Journal of Asthma.

What has newer research found?

A large genomic study published in 2025 examined health conditions among people carrying one disease-causing CFTR variant. ABPA was observed more frequently among carriers, with an estimated odds ratio of 2.50.

That result needs careful interpretation. ABPA was uncommon, and the association did not remain statistically significant after the researchers accounted for the large number of conditions being investigated. The study’s overall analysis did not find conclusive evidence that CFTR carriers had an increased risk across the range of cystic-fibrosis-associated conditions.

The researchers also noted that some earlier studies recruited patients who were already receiving specialist care or genetic testing. This can create selection bias: the people included may not be representative of carriers in the wider population.

Read the 2025 study in JAMA Internal Medicine.

Other recent research indicates that CF carriers who develop bronchiectasis may experience more severe disease or particular respiratory infections. These findings support further investigation of CFTR function in chronic lung disease, but they do not prove that carrier status causes bronchiectasis or ABPA.

Read the 2024 study of CF carriers with bronchiectasis.

Should everyone with ABPA have CFTR testing?

Current international ABPA guidance does not recommend routine CFTR genetic testing for every person with ABPA.

A respiratory specialist may consider investigating cystic fibrosis or a CFTR-related disorder when other clinical features raise suspicion. These might include:

bronchiectasis beginning unusually early in life;
recurrent or persistent respiratory infections;
repeated isolation of organisms commonly associated with cystic fibrosis;
chronic sinus disease or nasal polyps;
digestive problems or pancreatic insufficiency;
male infertility caused by congenital absence of the vas deferens;
a family history of cystic fibrosis; or
previous genetic results that require further interpretation.

Depending on the circumstances, assessment could include a sweat test, genetic testing and referral to a cystic fibrosis or clinical genetics service.

Read the revised international guidance on diagnosing and treating ABPA.

What does a positive genetic result mean?

Finding one CFTR variant does not automatically explain a person’s ABPA, establish a diagnosis of cystic fibrosis or indicate that their treatment should change.

There are thousands of known CFTR variants, and they do not all have the same effects. Results need to be interpreted alongside symptoms, medical history, sweat-test results and other clinical findings.

Genetic counselling can help people understand what a result means for them and whether it has implications for relatives or future children.

Does CF carrier status change ABPA treatment?

There is currently no evidence that someone should receive antifungal treatment, corticosteroids, biologic treatment or a CFTR modulator solely because they carry one CFTR variant.

ABPA treatment should continue to be based on the person’s symptoms, test results, lung imaging, underlying condition and response to treatment. CFTR modulators are approved for eligible people with cystic fibrosis; they are not an established treatment for ABPA in people who do not have CF.

The current position

CFTR variants may contribute to respiratory susceptibility in some people with ABPA, but the size and clinical importance of the association remain uncertain. More prospective research involving representative patient groups is needed.

If you have ABPA and are concerned about cystic fibrosis or a genetic test result, discuss this with your specialist team. They can decide whether further assessment or genetic counselling would be useful in your particular circumstances.

This information is intended for general education and does not replace individual medical advice.

by GAtherton

People listening supportively in an aspergillosis peer-support group, with different paths representing individual patient journeys.

Your Story Matters—but It Is Not Someone Else’s Future

Being diagnosed with aspergillosis can be frightening. Many people turn to support groups hoping to meet others who understand, learn what treatment is like and discover how people manage everyday life.

Hearing from someone who has lived through the same illness can provide something that medical information alone cannot: recognition, practical experience and the reassurance that you are not facing it alone.

But there is an important distinction between sharing an experience and predicting another person’s future.

“This happened to me” can be helpful.
“This is what you have ahead of you” may not be true.

Aspergillosis does not follow one path

The word aspergillosis covers several very different conditions. These include allergic bronchopulmonary aspergillosis (ABPA), chronic pulmonary aspergillosis (CPA), Aspergillus bronchitis, aspergilloma and invasive aspergillosis.

They do not have the same causes, treatments or likely outcomes. The US Centers for Disease Control and Prevention notes that different forms of aspergillosis have different symptoms and treatments.

Even people with the same form of aspergillosis can have very different experiences. Their health may be influenced by:

the extent of their lung disease;
asthma, bronchiectasis or another underlying condition;
immune function and other health problems;
how early the disease was recognised;
response to antifungal or other treatment;
side effects and tolerance of medicines;
access to specialist care.

One person’s course—whether difficult or relatively straightforward—cannot reliably tell us what will happen to another.

For more information about how the different conditions compare, see our guide to the different forms of aspergillosis.

Why support groups can sometimes appear frightening

Support groups perform an enormously valuable role. Research across a range of health conditions shows that peer support can reduce isolation, provide practical knowledge and help people cope with illness.

However, the conversations in a support group do not necessarily represent everyone living with the condition.

People are particularly likely to seek help when they are newly diagnosed, experiencing symptoms, having treatment difficulties or feeling worried. Those who are stable or getting on with their lives may have less reason to post regularly. This can make the most complicated experiences especially visible.

Several people describing serious difficulties does not necessarily mean that everyone—or even most people—with the condition will experience the same course.

This does not make those difficult stories any less real. It simply means that they should not be treated as a forecast for somebody else.

Difficult experiences deserve to be heard

People who have endured years of illness may want to protect others from being unprepared. A warning that sounds pessimistic may come from kindness, frustration or the wish to ensure that another patient is taken seriously.

Nobody should feel pressured to make a difficult experience sound positive. Support groups must remain places where people can speak honestly about fear, deterioration, treatment failures and loss.

But honesty also includes acknowledging uncertainty:

“My illness developed in this way, but yours may not.”

That small qualification can make a great difference to somebody who has only just been diagnosed.

Sharing without predicting

Helpful ways to introduce a personal experience include:

“This was my experience, although yours may be different.”
“I have the same diagnosis, but I also have other lung conditions.”
“This happened to me, so it may be worth asking your doctor about.”
“Some people experience this, but not everyone does.”
“Ask your clinical team what they expect in your particular case.”

Try to avoid statements such as:

“This is what you have ahead of you.”
“It will inevitably get worse.”
“That treatment never works.”
“You will end up in the same position as me.”

The same principle applies to reassuring stories. One person doing very well does not guarantee that another person will have the same result. Peer support should offer experience, companionship and useful questions—not certainty that no individual can provide.

For people who are newly diagnosed

If the stories you encounter feel overwhelming, remember:

the person speaking may have a different form of aspergillosis;
they may have additional illnesses or a more complicated clinical history;
support-group discussions may contain a greater proportion of people currently experiencing problems;
treatments and clinical knowledge change over time;
your own healthcare team has information about your tests, scans, medical history and response to treatment.

It is reasonable to ask your healthcare team:

Which form of aspergillosis do I have?
How severe does it appear to be?
What is the purpose of my treatment?
What improvement or stability are you hoping to achieve?
What will you monitor?
Are there particular warning signs I should know about?

These questions can provide more useful information about your likely course than another person’s experience alone.

Making space for every story

A healthy support community needs people who are struggling, people who are improving and people whose condition is stable. It needs realism, but it also needs hope—and neither should be manufactured.

Your experience matters. Sharing it may help someone feel understood, recognise a problem or ask an important question.

But it remains your story, not their prognosis.

The most supportive message we can offer may be:

“I cannot tell you what your future holds, but you do not have to face the uncertainty alone.”

If you would like to meet other people affected by aspergillosis, learn more about our patient support groups and meetings.

The state of play

Damp and mould are no longer regarded simply as cosmetic housing problems. The
World Health Organization guidelines on indoor dampness and mould
concluded that occupants of damp or mouldy buildings have increased risks of respiratory
symptoms, respiratory infections and worsening asthma.

Since then, large reviews and newer studies have continued to associate damp or mouldy
homes with:

the development and worsening of asthma;
wheeze, cough and breathlessness;
allergic rhinitis and fungal sensitisation;
respiratory infections, particularly in children;
hypersensitivity pneumonitis in susceptible people;
fungal disease in a smaller number of clinically vulnerable people;
stress, anxiety and poorer mental wellbeing.

These findings describe increased risks across populations. They do not mean that every
person living in a damp home will become ill, or that every symptom occurring in a mouldy
property was necessarily caused by mould.

Nevertheless, the overall evidence is sufficiently strong that public-health advice is to
prevent persistent dampness and remediate mould promptly. Current
UK Government guidance on the health risks of damp and mould
also makes clear that landlords should respond to the presence of damp and mould rather than
waiting for tenants to provide medical proof.

How our understanding has changed

Before 2000: concern but limited measurement

Doctors and housing researchers had long observed that people in damp buildings reported
more respiratory symptoms, but studies used many different definitions of dampness and
mould.

2009: an international evidence benchmark

The WHO reviewed the available evidence and concluded that preventing or minimising
persistent dampness and microbial growth was the most important protective measure.

2010s: stronger epidemiological evidence

Systematic reviews found consistent associations between visible dampness or mould and
asthma, wheeze, cough, respiratory infections and allergic symptoms. A widely cited
review by Mendell and colleagues
helped establish the modern evidence base.

2022–25: damp housing becomes a major UK policy issue

The death of two-year-old Awaab Ishak after prolonged exposure to mould in social housing
transformed public understanding and accelerated legal reform. The first phase of
Awaab’s Law
came into force for social housing in England in October 2025.

2026: measuring the indoor fungal environment

Researchers are now moving beyond questionnaires and visible mould to analyse the mixture
of fungal material present in indoor air. This does not yet provide a routine clinical test,
but it gives a much more detailed picture of exposure.

What has changed in 2026?

Several new papers have added important pieces to the evidence. They do not overturn the
existing consensus. Instead, they begin to answer questions that older research could not.

1. What fungi are people actually breathing inside UK homes?

The most important new UK exposure study was published in The Lancet Microbe by
Samuel Hemmings and colleagues.

The researchers sampled air in 118 West London households, with repeated
sampling across different seasons. They used passive air samplers, DNA sequencing and
quantitative PCR rather than relying only on visible mould or attempting to grow selected
fungi in culture.

Across 262 indoor and outdoor samples, the researchers detected more than
2,000 fungal genera. Indoor fungal communities were significantly richer,
more diverse and more variable between locations than the communities detected at the
outdoor sampling sites. Indoor communities also showed much stronger seasonal cycling.
:contentReference[oaicite:0]{index=0}

Several medically relevant genera, including Aspergillus,
Penicillium and Wallemia, were enriched indoors. Visible mould was
associated with some of the highest total fungal burdens measured in the study.
:contentReference[oaicite:1]{index=1}

Read the original open-access paper: Hemmings SJ et al. Diversity analysis of indoor and outdoor fungal bioaerosols in UK households
.

Visible mould was not the whole story

One of the most clinically interesting observations involved a home in which no visible mould
was found. A child living there had uncontrolled asthma, confirmed Aspergillus
allergy and repeated hospital admissions.

The total fungal burden in that home was close to the study median, but
Aspergillus was unusually prominent and its estimated absolute abundance was among
the highest in the study. :contentReference[oaicite:2]{index=2}

This single household cannot prove that the exposure caused the child’s hospitalisations.
It does, however, show why visual inspection alone cannot describe the full fungal environment
inside a property.

A home can have a potentially important airborne fungal profile even when no large patch of
mould is visible.

What this study does not tell us

This was principally an environmental exposure study, not a clinical trial designed to prove
that particular fungal measurements caused illness.

It does not establish:

a safe or unsafe numerical threshold for indoor fungal exposure;
that greater fungal diversity is necessarily harmful;
that every home should undergo commercial air testing;
that detecting Aspergillus means someone will develop aspergillosis;
that one measurement can predict an individual patient’s symptoms.

Its importance is that it establishes a detailed UK baseline and demonstrates methods that
may support better research and surveillance in the future.

2. Long-term exposure and the development of respiratory disease

A second 2026 study examined dampness and mould exposure over approximately 20 years in more
than 8,400 adults participating in the Respiratory Health in Northern Europe
study.

Long-term exposure was associated with the later onset of respiratory symptoms, asthma and
rhinitis. Exposure reported in both the home and workplace appeared more concerning than
exposure in only one setting.

This is important because much of the earlier evidence was based on cross-sectional studies,
which measure housing conditions and health at roughly the same time. Longitudinal research
is better able to establish that exposure occurred before the new health outcome, although it
still cannot remove every possible confounding factor.

Read: Wang J et al. Dampness and mould over 20 years and new onset of respiratory symptoms, asthma and rhinitis
.

3. Damp housing and mental health

The health burden of damp housing is not limited to the lungs. Living with an unresolved
leak, damaged belongings, unpleasant smells, repeated cleaning, disputes over repairs and
fear for a child’s health can be profoundly stressful.

A 2026 analysis published in the American Journal of Epidemiology found an
association between damp housing and psychological distress. The association was stronger
among people who already had a chronic respiratory condition.

This does not establish that inhaled mould directly causes every mental-health effect. Much
of the burden may arise through the combined effects of physical symptoms, housing insecurity,
financial pressure, disrupted sleep, loss of belongings and difficulty obtaining repairs.

Read: Gatto MR et al. The effect of damp housing on psychological distress: does respiratory health matter?
.

4. Flooding and water-damaged buildings

Climate change and more frequent extreme rainfall are increasing interest in the health
consequences of flooded buildings.

A 2026 study in the Journal of Cleaner Production examined new respiratory symptoms
following major flooding. Indoor mould, flood depth, roof condition, ventilation and other
building characteristics emerged as important predictors.

The findings support an established practical principle: after water damage, buildings need
to be dried, assessed and repaired promptly. Simply redecorating a surface while moisture
remains within walls, floors or furnishings may leave the underlying problem unresolved.

Read: Pakdehi M et al. Impacts of major floods on new human respiratory health symptoms in indoor environments
.

5. Can greener and better-insulated homes remain healthy?

Another important 2026 paper approached the problem from building science rather than
medicine.

The open-access review in npj Materials Degradation, part of the Nature Portfolio,
examined the mould susceptibility of bio-based insulation materials used in modern
construction.

Materials made from plant or other biological sources can reduce the environmental impact of
construction. However, because they contain organic material, some can support fungal growth
if they become persistently wet.

The review found that meaningful comparison between products is difficult because laboratory
testing methods vary and do not always reproduce conditions inside real buildings. The authors
called for standardised testing and better long-term evidence from occupied buildings.

Read: Wildman J et al. Mould susceptibility of bio-based insulation materials in modern construction
Energy efficiency and healthy indoor air are not competing goals. Buildings need insulation, moisture control and effective ventilation to be considered together.

What does all of this mean?

The new studies fit together rather than contradicting one another:

Long-term population studies show that prolonged exposure is associated
with new respiratory disease.
The UK household study shows that indoor fungal communities can differ
greatly from outdoor air and from one home to another.
Mental-health research shows that the consequences extend beyond physical
respiratory symptoms.
Flood research highlights the importance of rapid drying and building repair.
Building-material research shows that moisture resilience must be included
when homes are insulated or refurbished.

We are therefore moving from a fairly broad conclusion—
damp buildings are associated with poor health—towards more detailed questions:

Which fungi and other microbial products are present?
What are their sources?
How does exposure vary through the year?
Which people are most susceptible?
What level and duration of exposure are harmful?
Which repairs and ventilation interventions produce meaningful health improvements?

Why some people are more vulnerable

Most people inhale fungal spores every day without developing fungal disease. Health effects
depend on the person, the building, the mixture of exposures and the duration of exposure.

Greater caution is appropriate for:

babies and children;
people with asthma or severe asthma;
people sensitised or allergic to fungi;
people with ABPA;
people with bronchiectasis, COPD or other chronic lung disease;
people with CPA or another form of aspergillosis;
people whose immune system is significantly weakened;
older people and those with reduced mobility.

For people with asthma, fungal sensitisation or ABPA, exposure may trigger allergic airway
inflammation. In someone with damaged lungs, impaired mucus clearance or substantial immune
suppression, the clinical questions may be different and should be discussed with the
treating team.

Can indoor mould cause aspergillosis?

Aspergillus is common in the wider environment as well as indoors. Detecting it in a
home does not prove that it caused a person’s aspergillosis, and it is usually impossible to
trace an individual infection or allergic response to one particular building.

However, avoiding persistent and unnecessary high exposure is sensible, particularly for
people with fungal allergy, ABPA, damaged lungs or significant immune suppression.

Our guide to reducing exposure to mould and Aspergillus at home
explains practical steps without suggesting that a home can or should be made completely
free of fungal spores.

Should you buy a home mould test?

Routine commercial testing is not normally the first or most useful response to visible damp
or mould.

There are currently no universally accepted health-based numerical limits for total indoor
fungal bioaerosols. A sample may also vary according to the room, season, weather, sampling
method and activity in the home.

A result showing that fungi are present does not by itself establish:

that the level is dangerous;
that the fungi caused a particular illness;
where the moisture is entering the building;
what repair is required.

Where damp, leaks, condensation or mould are already apparent, the priority is usually a
competent inspection of the building and correction of the moisture source.

What to do if your home is damp or mouldy

Record the problem. Photograph visible mould, staining, condensation, leaks
and damaged possessions. Record dates, affected rooms and previous reports.
Report it in writing. Tenants should notify their landlord or housing
provider and keep copies of messages and repair reports.
Ask for the underlying cause to be investigated. Possible causes include
plumbing or roof leaks, penetrating or rising damp, inadequate insulation, cold bridges,
defective extraction and insufficient ventilation.
Explain relevant health vulnerabilities. State clearly when a household
member has asthma, chronic lung disease, fungal allergy, aspergillosis, immune suppression
or another condition that may increase risk.
Reduce moisture where reasonably possible. Use working extractor fans,
ventilate after bathing or cooking, avoid blocking air vents and dry wet materials promptly.
Do not accept repeated surface treatment as a permanent repair. Cleaning or
painting may remove visible growth temporarily but will not solve an ongoing moisture defect.

Residents should not be blamed automatically for damp and mould. Everyday activities generate
water vapour, but a healthy building should be capable of managing normal moisture through an
appropriate combination of heating, insulation, extraction and ventilation.

Cleaning mould safely

A small, isolated area of surface mould may sometimes be cleaned after the moisture source has
been corrected. Larger areas, recurrent mould, sewage-contaminated water damage or mould within
porous building materials may require professional assessment.

People with severe asthma, significant fungal allergy, aspergillosis or immune suppression
should avoid carrying out extensive mould removal themselves, because cleaning can release
spores and fragments into the air.

More practical guidance is available in our Housing & Environment Hub
.

When to seek medical advice

Contact your healthcare team when:

asthma or breathlessness has become more difficult to control;
you are waking at night because of cough, wheeze or chest tightness;
you are needing reliever medication more frequently;
you have recurrent chest infections or worsening sputum production;
symptoms repeatedly improve away from the building and return after coming home;
you have aspergillosis, fungal allergy or immune suppression and substantial mould exposure;
the housing problem is causing serious anxiety, poor sleep or psychological distress.

Severe breathlessness, blue or grey lips, confusion, collapse, marked difficulty speaking or
a rapidly deteriorating asthma attack requires urgent medical help.

What remains uncertain?

Important gaps remain despite the strength of the overall evidence.

There is no single health-based threshold that defines a safe total indoor fungal count.
No one test captures all spores, fragments, allergens, microbial compounds and co-exposures.
The health importance of a fungal genus depends on species, quantity and individual susceptibility.
Associations observed in populations cannot prove the cause of every individual illness.
More high-quality intervention studies are needed to establish which repairs deliver the greatest health benefit.

A Cochrane review of remediation in damp and mould-damaged buildings found some evidence that repairs can reduce respiratory symptoms, but also highlighted the limited number and variable quality of intervention studies.

The benchmark conclusion in 2026

The current scientific position can be summarised carefully:

Persistent dampness and mould in homes and workplaces are preventable environmental health
hazards. They are associated with asthma, respiratory symptoms, infections, allergic disease
and psychological distress, with greater concern for people who already have respiratory or
immune vulnerability.

The most important practical intervention remains the same: identify and correct the source of
moisture, dry the building and remove damaged or mould-contaminated material appropriately.

What has changed is our ability to examine exposure. New DNA-based studies show that indoor
fungal communities are complex, seasonal and highly variable between homes. This may eventually
allow better exposure standards and more targeted interventions, but the science is not yet at
the point where a commercial air sample can reliably predict an individual person’s health risk.

Further information and support

Selected evidence

Hemmings SJ, Varaden D, Barnes J, et al. Diversity analysis of indoor and outdoor
fungal bioaerosols in UK households: a prospective, observational, longitudinal study.
Lancet Microbe. 2026;7:101379.
View the paper.
World Health Organization. WHO Guidelines for Indoor Air Quality: Dampness and
Mould. WHO Regional Office for Europe; 2009.
View the guideline.
Mendell MJ, Mirer AG, Cheung K, Tong M, Douwes J. Respiratory and allergic health
effects of dampness, mould, and dampness-related agents: a review of the epidemiologic
evidence. Environmental Health Perspectives. 2011;119:748–756.
PubMed.
Varga MK, et al. Childhood asthma and mould in homes: a meta-analysis.
Allergy. 2025.
PubMed.
Groot J, et al. Residential mould and dampness and the risk of respiratory tract
infections and respiratory symptoms in children: a systematic review and meta-analysis.
PubMed.
Wang J, Holm M, Dahlman-Höglund A, Janson C, et al. Dampness and mould over 20 years
and new onset of respiratory symptoms, asthma and rhinitis.
Journal of Hazardous Materials. 2026.
View the paper.
Gatto MR, Li A, Martino E, Bentley R. The effect of damp housing on psychological
distress: does respiratory health matter?
American Journal of Epidemiology. 2026;195:1292–1299.
PubMed.
Pakdehi M, Ahmadisharaf E, Suliman AA, Abdelrazig Y. Impacts of major floods on new
human respiratory health symptoms in indoor environments.
Journal of Cleaner Production. 2026;557:148247.
View the paper.
Wildman J, Shea A, Cascione V, et al. Mould susceptibility of bio-based insulation
materials in modern construction. npj Materials Degradation. 2026;10:29.
View the open-access review.
Sauni R, Verbeek JH, Uitti J, Jauhiainen M, Kreiss K, Sigsgaard T. Remediating
buildings damaged by dampness and mould for preventing or reducing respiratory tract
symptoms, infections and asthma. Cochrane Database of Systematic Reviews. 2015.
View the review.

by GAtherton