Information for the public

Information and support

Information and support

Your specialist doctor or the specialist lung nurse should give you (and your family and carers with your permission) accurate and clear verbal and written information about idiopathic pulmonary fibrosis. This should include information about the different tests, your diagnosis and how your condition will be managed. You will have the opportunity to talk about how your idiopathic pulmonary fibrosis is progressing and how severe your disease is. Within 6 months of you being diagnosed with idiopathic pulmonary fibrosis, your doctor should also offer you information about ventilation and lung transplantation.

A specialist lung nurse should be available to provide information and support to you and your family and carers throughout your illness.

If you smoke, you should also be given advice, treatment and support to help you stop smoking. See Other NICE guidance for details of our guidance on smoking.

Questions you might like to ask

  • Can you tell me more about idiopathic pulmonary fibrosis?

  • Can you tell me more about how my disease is progressing?

  • Would it help my condition if I made some changes to my lifestyle?

  • Are there any support organisations in my local area?

  • Can you recommend any good sources of information about idiopathic pulmonary fibrosis?

  • Can you provide any information for my family/carers?

  • Can you give me the contact details of a specialist lung nurse who I can contact if I have any questions?

  • Is there any additional support that I might benefit from or be entitled to?

Questions your family or carers might like to ask

  • What can I/we do to help and support the person with idiopathic pulmonary fibrosis?

  • Is there any additional support that I/we as carer(s) might benefit from or be entitled to?

  • Information Standard