Running a PF support group: Q&A with a group leader

People in a support group setting
January 2023

Ellie Kingston is a Community Respiratory Nurse at Bishop Auckland and has been running the Darlington Pulmonary Fibrosis Support Group for nearly a year. The group meets every month at Bishop Auckland Fire Station to share their experiences of pulmonary fibrosis and support one another. In this Q&A, Ellie shares her insights as a support group leader.

What motivated you to become a support group leader?

As a healthcare professional I had already set up a support group for patients with respiratory disease when I worked at a local hospice. This group took off well and patients who did not routinely tap into hospice services did so. For some of those who died at the hospice, their families shared how different the experience would have been without this group and the hospice care.

I have seen first-hand how few groups there are. The lack of support out there for patients with any type of respiratory disease means these resources are so valued and needed for these patients in particular.

What are the most rewarding activities in your role as a support group leader?

The most rewarding part for me has been hearing the response from the group members, telling me how valuable they feel the group is to them. 

What are the challenges you have faced, and what inspires you to keep going?

One of the main initial challenges was finding a venue with parking and facilities which were suitable for people with severe breathlessness etc. Many places were not equipped for people carrying oxygen, with lots of stairs, no lifts and nowhere close enough for people to park and walk.

What inspires me has been the response from people telling me how valuable the group has become and the fact they have access to someone who has knowledge of disease and a passion for caring for them and keeping them informed.

What would you say to someone considering becoming a support group leader?

I would encourage anyone with a passion and an interest in setting up a group or getting involved to do so. Each group touches many lives and can make a huge difference.

Support Groups are a great source of emotional support, information, and advice for people affected by pulmonary fibrosis. With a network of Pulmonary Fibrosis Support Groups across the UK, you can locate your nearest group via the map on our website.

If there isn’t a group in your area, you may wish to set up your own. Anyone affected by pulmonary fibrosis can set up a group, you don’t have to be a healthcare professional. APF will help and support you and put you in touch with other groups.  If you would like more information on setting up a group, please email us on