O: What support is available for PF patients?

There are many online and community resources for pulmonary fibrosis patients. Patient groups, education materials, breathing exercises, physiotherapy and exercise classes or pulmonary rehabilitation programs can all help maintain fitness, support lung health and improve breathing.

 

🎥 Watch the Video: What support is available for pulmonary fibrosis patients?

 

Professor Porter discusses the following:

• What support is available for pulmonary fibrosis patients and their families?
• Is there support online or in the community?
• Which exercise classes are good for pulmonary fibrosis?
  • Visit Action for Pulmonary Fibrosis for their exercise videos 
• Where can I find breathing exercises to help with my shortness of breath?
  • Click here to see our breathing control videos 

 

Full Video Transcript

This is a very important question because the National Health Service can do so much, can treat you with medications or oxygen, but actually, we’ve already discussed the time between appointments may be quite drawn out, so you may not see your physician for three months. So, what can you do in the meantime to draw some help from either online or community resources?

I would say there are very good online resources. Action for Pulmonary Fibrosis is a UK-based charity that supports patients with pulmonary fibrosis, and Breathing Matters has patient resources. There are also patient groups; we have one at our hospital that meets every two to four weeks, and they discuss different aspects of pulmonary fibrosis.

There are also online communities. And I think Action for Pulmonary Fibrosis is a great supporter of patient groups, both online and in person (they certainly support our patient group here at UCLH). There are also other in-person resources. We can sometimes arrange a community physiotherapist, but I think, really importantly, is your community gym, which may have classes for patients with lung disease.

Once you’ve checked with your physician that it’s all right for you to take part, then I can really recommend joining an [exercise] class or a group for older people or even older patients. Many of our patients get introduced to exercise through pulmonary rehabilitation, which is organised in the community. And then, from these classes, they’re then advised how to go about continuing their exercise regimes, either at the gym or at home.

We’re hoping to produce some online videos to help with breathing. I can link some of them below. This is to help you use your diaphragm more when you breathe, which is really important. And also some links to other groups and exercise classes that can be done in the comfort of your own home.

 

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[Video published December 2025]