Patient Support

Being given a diagnosis of Pulmonary Fibrosis or some such Interstitial lung disease can be a very worrying, and lonely time. Very few people have heard of or understand the disease. In the current climate hospital specialists are sometimes very busy and many people are reluctant to contact them with questions for fear of wasting their time. One of the best things you can do is to join a support group. Talking to other people with the disease can be very helpful, can allay a lot of fears, and help you cope with changing symptoms, and obtain help with strategies with dealing with some of the symptoms. Here in the South West peninsula, served by the specialist ILD Team at Exeter‘s RD&E hospital, we have a number of ways you can get help and advice from other patients. There are also reliable information sources.

Details of Zoom meetings, WhatsApp group, befriending services and other resources can be found on the associated pages.

There are many opportunities to get involved in research projects and clinical trials at various levels, including trial design and results review.https://sites.exeter.ac.uk/eri/patient-support/sw-pf-support-group/