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Questions for your healthcare team

Appointments with your healthcare team are a great opportunity to ask questions and learn more about your pulmonary fibrosis. Get the most from your appointments with these simple suggestions.

Making the most of your appointments

To get the most from your appointments, you may want to take someone with you. They can help ask questions, remember details of the conversation, and offer support. Having someone with you can also be helpful if you feel nervous about your appointments.

Some people find it helpful to take notes during appointments.

Remember that you're entitled to have enough time to take in the conversation and have your questions answered.

Your healthcare team

The healthcare professionals in your team will vary. Your medical team might not have all the professionals listed below.

ILD consultant: a senior doctor who will lead your medical treatment. They work alongside other doctors and health professionals to help you make decisions about your treatment.

ILD nurse: a specialist nurse who will support your ongoing care. They can advise on all aspects of pulmonary fibrosis including symptom management and information on your condition.

ILD pharmacist: a specialist pharmacist who will advise on medication.

Physiotherapist: they will support symptom management including breathlessness and getting around and advise on all aspects of physical well-being.

Occupational therapist: they will support you to manage everyday activities alongside your symptoms.

Community respiratory team: a team of different professionals who deliver care at your home or local facilities.

Palliative care team: a specialist team who will support you to have the best quality of life at any point after your diagnosis.

It may be helpful for you to write down the contact details for each member of your healthcare team.

Questions you may want to ask

These questions may help you better understand your diagnosis and the care available to you.

Before diagnosis

What tests will I need?
What will the tests involve?
Will I have to stay in hospital?
How long will it take to get the results?

After diagnosis

Do you know the cause of my pulmonary fibrosis?
Do you know how advanced my fibrosis is?
Is my pulmonary fibrosis progressive?
What treatments can I have? What is the aim of the treatment?
If I choose not to be treated, what would happen?
Can I be treated privately or by a different hospital?
Who will look after me?
Will I get better?
Is there a cure for pulmonary fibrosis?
Could I have a lung transplant?

Coping with pulmonary fibrosis

Where can I get more information about the disease?
Is there any support available for me and my family?
What can I do to help myself?
Is there a patient support group nearby you could refer me to?
Is there a nurse who I can phone from home, if I am worried about anything?
Where can I learn more about managing my symptoms?
What holistic supportive care is available to me?
Can you tell me more about pulmonary rehabilitation and if it is suitable for me?
What vaccinations am I eligible for?

Our website and resources provide general information only. We cannot provide medical advice, treatment or prescriptions, nor can we assess/decide what services or clinicians you should be referred to. Support with these matters will need to be provided by your existing healthcare professional teams.

APF is not responsible for any errors or omissions or for any loss or damage suffered by users resulting from the information published on our website or in our resources.

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