Interstitial lung disease assessment (Assessment for interstitial lung disease (ILD))
A set of tests and specialist review to find out whether you have interstitial lung disease (scarring or inflammation of the lung tissue), which type, and how to manage it.
✓ Medically reviewed by a GMC-registered consultant · last reviewed September 2026 · next review September 2027 · how we review
In short
- An ILD assessment works out whether you have interstitial lung disease, which type, and what may have caused it, using several tests together.
- It usually needs breathing tests, a detailed CT scan, blood tests and sometimes a biopsy, reviewed by a specialist team — no single test gives the answer.
- Reaching the right type matters because different ILDs behave very differently; the assessment cannot reverse existing scarring.
- It is normally NHS-led, often through a specialist centre; sometimes the diagnosis remains uncertain even after thorough testing.
A plain-English summary. The detail — including risks and recovery — is below.
At a glance
A general guide. Your specialist will give you advice for your situation.
Works out whether you have ILD and, importantly, which type
A surgical lung biopsy is not suitable for everyone, especially if lung function is very poor or the result would not change treatment.
There is usually no physical recovery and you can go straight back to normal activity. The main thing is waiting for results to be brought together.
Results explained by a specialist after team (MDT) review, with time for questions.
There is usually no physical recovery and you can go straight back to normal activity. The main thing is waiting...
You may have a sore throat and a cough for a day or two, and if sedation is used you should not drive or make...
This needs an anaesthetic and usually a hospital stay, with chest discomfort and a recovery over a couple of...
Reaching a diagnosis usually takes weeks because results are discussed together by chest, radiology and pathology...
What is an interstitial lung disease assessment?
Interstitial lung disease (ILD) is a group of conditions where the lung tissue itself becomes inflamed or scarred, making the lungs stiffer and breathing harder. It is different from asthma and COPD, which mainly affect the airways. Idiopathic pulmonary fibrosis (IPF) is one well-known type.
An ILD assessment is the process of working out whether you have ILD, which type, how active or advanced it is, and what is likely to have caused it. It is an assessment made up of tests, not a single operation.
It usually combines breathing (lung function) tests, a detailed CT scan of the chest, blood tests and sometimes a biopsy. Because no single test gives the whole answer, the results are normally reviewed together by a specialist team — a process that is considered the best way to reach an accurate diagnosis.
Reaching the right diagnosis matters because the many types of ILD behave very differently and need different treatment. The assessment guides care, but it cannot reverse scarring already present, and sometimes the picture stays uncertain even after thorough testing.
Types, options & approaches
There may be different ways to do this. The right approach depends on the clinical question and your circumstances.
HRCT scan vs lung biopsy
| Aspect | HRCT scan | Lung biopsy |
|---|---|---|
| What it shows | Pattern of scarring on imaging | Lung tissue under the microscope |
| How invasive | Usually not painful scan | Keyhole surgery or telescope test |
| When used | Almost always, early | Only if diagnosis stays unclear |
| Main risk | Radiation, incidental findings | Bleeding, air leak, anaesthetic risk |
Many people are diagnosed without a biopsy when the scan, blood tests and specialist review point clearly to a type. A biopsy is reserved for when the picture remains uncertain and the result would change treatment.
Preparing for your test
- Bring details of your symptoms, especially breathlessness and cough, and how they have changed over time.
- List your jobs and hobbies, as some dusts, moulds, birds and chemicals can cause ILD.
- Bring a full medicine list, as some medicines can affect the lungs.
- Mention any joint, skin or autoimmune symptoms, and any family history of lung fibrosis.
- Tell the team about smoking history and any previous chest infections or radiotherapy.
- Ask whether any test needs special preparation, and whether a biopsy might be needed.
- Consider bringing someone with you, as the assessment can involve a lot of information.
What happens
An ILD assessment is a series of appointments and tests, not a single procedure. A specialist asks in detail about your breathlessness, cough, work, hobbies, medicines and other health problems, and listens to your chest, often for fine crackles, and looks at your fingers for clubbing.
You will usually have breathing (lung function) tests that measure how stiff your lungs are and how well oxygen passes into the blood, and a high-resolution CT scan of the chest. Blood tests look for causes such as autoimmune disease. Your oxygen may be checked at rest and during a walk.
If the diagnosis is not clear from these, a sample of lung tissue or fluid may be taken, either by a telescope test (bronchoscopy) or, less often, by keyhole surgery, which involves an anaesthetic and a short recovery.
The results are then usually discussed by a specialist team of chest physicians, radiologists and pathologists, who agree the most likely diagnosis and a plan. You are seen again to explain the findings, what they mean and the options, which can take weeks from start to finish.
Is this test right for me?
A good consultation should explore whether it's the right choice for you now — including reasons to wait or consider something else.
May not be suitable if…
- A surgical lung biopsy is not suitable for everyone, especially if lung function is very poor or the result would not change treatment.
- Where breathlessness is clearly due to another cause, such as heart failure, that should be assessed rather than assuming ILD.
- Rushing to a label from a single test is unwise, as ILD diagnosis needs results reviewed together.
- People who are acutely unwell may need stabilising and urgent care before elective assessment tests.
Delay or rearrange if…
- You have a current chest infection, which can change scan and test findings.
- You are rapidly deteriorating and need urgent rather than routine assessment.
- Key results or old scans that would help comparison are missing.
- A biopsy is being considered but your breathing is currently too unstable for it to be safe.
- You are pregnant or might be, which affects whether a CT scan should proceed and how.
Alternatives to discuss
- Careful monitoring with repeat tests where the picture is mild or unclear, rather than immediate biopsy.
- Non-surgical sampling (bronchoscopy) instead of surgical biopsy in suitable people.
- Reviewing exposures and medicines that could be causing lung changes.
- A second specialist opinion or referral to an ILD centre where the diagnosis is difficult.
- Assessing and treating other causes of breathlessness first.
Before you decide
Use this as a shared-decision checklist. The aim is not just “can this be done?”, but whether it is right for you, now, with the risks and alternatives clearly understood.
What matters most to me?
Think about symptoms, daily life, work, caring responsibilities, sport, fertility, travel, appearance and anxiety — the right choice depends on your priorities, not just the medical facts.
What are all my options?
Ask about waiting, monitoring, medicines, rehabilitation, a smaller or larger procedure, a different test, NHS referral, or a second opinion where that would help.
What would make me pause?
Active infection, pregnancy, unstable medical problems, smoking, medicines that increase bleeding, poor support at home, or feeling pressured are all reasons to slow down and get tailored advice.
What happens if I do nothing today?
For some problems, waiting is safe; for others, delay can make treatment harder. A good consultation should explain the trade-off in plain English.
Comfort, sedation or contrast choices
If local anaesthetic, sedation, contrast or pain relief is used, ask what is planned, why, and what it means afterwards.
Benefits
- Works out whether you have ILD and, importantly, which type
- Helps identify a cause that can sometimes be removed or treated
- Measures how advanced and how active the condition is
- Guides the right treatment, which differs greatly between ILD types
- Gives a baseline so change over time can be tracked
- Allows honest discussion of what to expect and what support is available
Risks & complications
- Anxiety while waiting for results and a diagnosis
- Radiation exposure from CT scanning
- Breathlessness or tiredness during breathing and walking tests
- Sometimes an uncertain diagnosis even after thorough tests
- Incidental findings on the CT scan that need further tests
- Needing repeat or additional tests to clarify the picture
- Reaction to contrast dye if used for the scan
- Discomfort or minor bleeding from blood tests
- If a biopsy is done: bleeding, an air leak from the lung (pneumothorax), infection or anaesthetic complications
- A flare of the lung condition triggered by a biopsy in vulnerable people
- Serious reaction to sedation or contrast
Most of the assessment is non-invasive and low-risk; the main burdens are radiation from CT, the worry of waiting, and the chance of an uncertain result. The higher-risk part is a surgical lung biopsy, which is only done when the diagnosis would otherwise stay unclear and the result would change treatment. Ask why each test is needed, whether a biopsy is really necessary, what the risks of biopsy are for you, and when the specialist team will review your results.
Published figures to discuss
How likely the tests are to give a firm diagnosis, and the risks of a biopsy, depend on the pattern of disease, how advanced it is, other health problems and which tests are used. A high-resolution CT does not give a definitive answer in every case, and a proportion of people need tissue sampling or remain without a precise label even then. This guide describes these uncertainties qualitatively rather than quoting exact figures, which vary between studies and centres.
| Figure | Reported range | How to interpret it | Source / confidence |
|---|---|---|---|
| HRCT giving a confident pattern diagnosis | Variable; depends on the CT pattern and clinical context | Some scans show a typical pattern; others need multidisciplinary discussion, repeat imaging or tissue sampling. | Guide sourcesClinical context |
| Need for biopsy or bronchoscopy | Recognised minority | Biopsy risks depend on technique and lung reserve. Frailty, oxygen need and pulmonary hypertension change the risk-benefit balance. | Multidisciplinary diagnosis of interstitial lung disease — PMCncbi.nlm.nih.govSource-linked context |
| Progression despite treatment | Variable by ILD subtype | Some inflammatory ILDs respond to immunosuppression, while fibrotic ILDs may progress and need antifibrotic or transplant discussions. | Guide sourcesClinical context |
| Missed exposure or autoimmune cause | Recognised | Birds, mould, occupational dusts, medicines, reflux and connective-tissue symptoms should be actively asked about, not left to chance. | Guide sourcesClinical context |
These are literature figures, not a personalised prediction. Your own risks and likely benefits depend on your circumstances, your health, and how your care is carried out and followed up.
What happens afterwards
For most of the assessment there is no operation and nothing to recover from. 'Afterwards' here means waiting for results and the specialist team's diagnosis. Only if a biopsy is done is there a physical recovery to consider.
- Feeling tired after breathing and walking tests
- No physical after-effects from scans and blood tests
- A wait of weeks before a firm diagnosis
- Sore throat and cough for a day or two after bronchoscopy
- Anxiety while results are gathered and reviewed
Aftercare
- Attend all the tests arranged, as a diagnosis usually needs several together.
- If you had a biopsy, follow the specific aftercare and wound advice given.
- Note any new or worsening breathlessness, cough or chest symptoms to report.
- Bring a list of questions to your results appointment, and someone to support you.
- Stay up to date with vaccinations, as chest infections can be more serious.
- If you smoke, ask for stop-smoking support.
- Make sure you know who to contact while waiting for results and afterwards.
- Work, hobby and exposure history written down
- Full medicine list to hand
- Notes on autoimmune or joint symptoms and family history
- Questions for the results appointment
- Someone to come with you for results
- Understanding of which tests are arranged and when
- Contact details for the ILD team
⚠ Get urgent help if…
- Rapidly worsening breathlessness over days — seek urgent help, as some ILDs can flare
- Severe breathlessness — call 999 if struggling to breathe or speak
- Blue or grey lips or fingertips, or new confusion or drowsiness
- Chest pain, especially if sudden or with breathlessness
- Coughing up blood
- High fever or feeling very unwell with a possible chest infection
- After a biopsy: increasing chest pain, breathlessness, fever or bleeding
Who to contact: your clinician, clinic or test provider first (keep their number to hand). For urgent advice when you can't reach them, call NHS 111. In an emergency, call 999.
General guidance — it doesn't replace the specific advice your specialist gives you.
Results & realistic expectations
A complete assessment ideally gives you a named type of ILD, an idea of how active or advanced it is, and a plan — which might be specific medicines, treating an underlying cause, removing an exposure, or careful monitoring. A clear diagnosis lets your team match treatment to your particular condition.
The assessment cannot reverse scarring that is already present, and for some people the exact type stays uncertain even after thorough tests, so the team may describe the most likely diagnosis and review it over time. A diagnosis is the start of management, not a guarantee of how things will go.
Most ILDs are long-term conditions, so the assessment is the beginning of ongoing care rather than a one-off event. Breathing tests and scans are often repeated to see whether the condition is stable, improving or progressing, and the diagnosis itself may be revisited if new information emerges. Treatment and support are adjusted as things change.
Related tests, treatments or support
An ILD assessment is often combined with looking for related conditions, such as autoimmune disease, reflux, sleep-disordered breathing or pulmonary hypertension, which can occur alongside ILD. It may lead on to pulmonary rehabilitation, oxygen assessment, vaccination and, where relevant, discussion of clinical trials or specialist drug treatment.
Follow-up & long-term care
After the specialist team review, you are seen to explain the diagnosis and plan, with a clear contact for questions. ILD is usually monitored long-term with repeat breathing tests and scans at intervals set by your team. If a biopsy was done, wound and recovery checks are arranged. Your GP and specialist share the plan and any treatment monitoring.
- Repeat breathing tests and scans to monitor the condition over time
- Regular specialist review, often at an ILD centre
- Monitoring blood tests if specific ILD medicines are started
- Pulmonary rehabilitation and, if needed, oxygen reviewed as the condition changes
- Vaccinations kept up to date and prompt treatment of chest infections
Repeat, follow-on and what comes next
- Tests are often repeated over time to see whether the condition is stable or progressing.
- An initial 'most likely' diagnosis may be revised as new information emerges.
- A biopsy is sometimes needed later if the picture stays unclear and would change treatment.
- Treatment is adjusted as the condition and the diagnosis are clarified.
Ask what happens if the result is unclear or needs repeating, and what is included if further tests or follow-up are needed.
What good aftercare looks like
- Results explained by a specialist after team (MDT) review, with time for questions.
- A clear monitoring plan with repeat tests at sensible intervals.
- A named contact for questions and for reporting worsening symptoms.
- Onward referral as needed for rehabilitation, oxygen assessment or specific treatment.
- Joined-up records so your GP and ILD team share the diagnosis and plan.
What affects the cost
Costs vary a great deal between people and providers, and we don't publish prices. What matters is understanding what drives the cost and making sure your quote is complete. The main things that affect it:
- Which tests are needed, such as lung function tests, CT scanning and blood tests
- Whether a bronchoscopy or surgical biopsy is required
- Specialist and radiology reporting, and team (MDT) discussion
- Any sedation, anaesthetic or hospital stay for a biopsy
- Repeat tests to confirm or monitor the diagnosis
- Follow-up consultations and any onward referrals
- How the service links with your NHS ILD team and GP
- Which tests are included and the cost of each
- Whether specialist team (MDT) review is included
- What happens, and who pays, if a biopsy is needed
- Who interprets the results and explains the diagnosis
- What happens if the diagnosis remains uncertain
- How monitoring and follow-up are arranged
- How findings are shared with your GP and NHS ILD team
On the NHS? Interstitial lung disease is normally assessed on the NHS, often through a specialist centre where the tests and team review are available; private care is mainly used for a faster assessment or second opinion and should be shared with your NHS team.
You're entitled to your total cost in writing — including reports, follow-up and what happens if the result is inconclusive — before you decide.
Consent traps and marketing red flags
These are not small details. They are often where patients lose choice, time to reflect, or realistic expectations.
Consent traps
- Recommending a biopsy without explaining its real risks and whether it will change treatment.
- Giving a firm diagnosis from a single test without specialist team review.
- Not explaining that the diagnosis may stay uncertain even after thorough testing.
- Not discussing what the results will and will not change for you.
- Not exploring treatable causes or exposures before settling on a label.
Marketing red flags
- Promising a quick, certain diagnosis of ILD from one scan or test.
- Claims that a treatment can 'reverse' lung fibrosis or scarring.
- Offering biopsies or scans without specialist team review of the results.
- Pushing unproven 'lung regeneration' or 'detox' treatments.
- Assessment that does not link back to an NHS ILD service for ongoing care.
Choosing a specialist safely
- Check the specialist is on the GMC Specialist Register for this area.
- Make sure they work at a CQC-registered service, and look for membership of the relevant Royal College or professional body.
- You're entitled to time to consider and to have your questions answered before you agree — the specialist who looks after you should explain it, not a salesperson.
- Be wary of pressure: time-limited offers or deposits taken before you've had time to think are red flags, not bargains.
- You're entitled to your total cost in writing — including any follow-up — before you decide.
Questions to ask your medical professional
Take this to your consultation. A good specialist will welcome every one of these.
- Which tests do I need, and why is each one necessary?
- Will my results be discussed by a specialist team, and when?
- Do I really need a biopsy, and what are its risks for me?
- What type of ILD do you think this is, and could it have a cause we can treat?
- How will you monitor whether my condition is stable or progressing?
- What support is available, such as pulmonary rehabilitation, oxygen or clinical trials?
- Are you on the GMC Specialist Register for this area, and which Royal College or professional body are you a member of?
- Will you be the specialist who carries out my test, and who looks after me afterwards?
- What are the risks for someone like me, and how often do your own patients have a problem or need it repeated or redone?
- What does a realistic result look like — and what can this test not achieve?
- What are my options, including waiting, doing nothing for now, or choosing a different approach?
- Can I have written information, results and aftercare instructions in a format I can use, including any accessibility or communication support I need?
- What is the total cost in writing, including any follow-ups, and how much time do I have to decide?
Frequently asked questions
Is an ILD assessment available on the NHS?
Why does it take so long to get a diagnosis?
Will I definitely need a lung biopsy?
Can interstitial lung disease be cured?
What does the CT scan involve?
What happens after I get the diagnosis?
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How we made this page
Medically reviewed by a GMC-registered consultant. Written in plain English, checked against NHS, NICE, GMC and relevant Royal College / specialist-society guidance, and kept under review. No clinic paid to appear on this page, and we publish no pricing. This is general information to help you prepare — it is not a substitute for advice from your own clinician. How we review our guides →
Source hierarchy: UK regulator and NHS/NICE guidance first, then relevant Royal College or specialist-society guidance, then peer-reviewed evidence for procedure-specific figures where available.
Sources & standards: NHS — Idiopathic pulmonary fibrosis: diagnosis NHS — Idiopathic pulmonary fibrosis British Thoracic Society — Interstitial lung disease guidelines NHS England — Interstitial lung disease service (adult) specification Multidisciplinary diagnosis of interstitial lung disease — PMC
Reviews reflect patients' experience of care, not clinical outcomes. For procedure volumes and outcome data see PHIN.
Last medically reviewed 2026-09-21. Spotted something wrong or out of date? Report an error in this guide.
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