Case Study: Action for Pulmonary Fibrosis

Wed 1 Nov 2023

Befrienders with Action for Pulmonary Fibrosis are trained volunteers who can offer a listening ear to anyone with pulmonary fibrosis, their carers, and family members over 18.

A Befriending Networks member, Action for Pulmonary Fibrosis provides training and ongoing peer support to their volunteers. They come from a range of backgrounds, including those with pulmonary fibrosis, carers, former carers, and people with no lived experience of the medical condition but who want to support others.

Support when it’s needed most

Pulmonary Fibrosis (PF) is a life-changing medical condition that makes it increasingly hard to breathe. There is no known cure, and treatments are limited.

Through lived experience, volunteers understand how tough life with PF can be. They give a few hours each week to offer peer support by phone.

In 2020, Linda’s partner Eric died suddenly at the age of 61 from PF. Shortly after his death, Linda found some comfort through Action for Pulmonary Fibrosis’ befriending service.

'When Eric was initially diagnosed with pulmonary fibrosis in 2018, as a family we were almost pleased – at least it’s not lung cancer, we thought. There’s so little known about pulmonary fibrosis even today. I ended up learning about it mostly through TV, there was a storyline about PF on Coronation Street, and it featured on 24 hours in A&E – that’s when I started to realise its severity.' 
'Eric’s death was traumatic for many reasons. Firstly, lockdown, which made it difficult to visit Eric during the last days of his life and denied us and him a proper funeral. Secondly, our family was not made fully aware of what a life-threatening and life-limiting condition PF can be, this meant his sudden decline came as a shock to us all. Hospital communication was also poor, and we were all just left feeling confused and alone.' 

The value of befriending 

'I found Action for Pulmonary Fibrosis myself and the befriending service sounded like exactly what I needed. My befriender, Elaine, was my lifeline during this time. Her direct experience was invaluable, and it helped that she wasn’t a family member, it meant I could open up to her without fear of upsetting anyone. I was talking to someone who understood what I was going through. It made my family feel better as well, to know that I had some kind of coping mechanism, especially at a time when I couldn’t see them because of COVID restrictions. She was the one-on-one support that COVID had robbed me of.'
'I spoke to Elaine for three years. To begin with, we spoke every week but, over time, the time between calls naturally grew. I really can’t thank her enough for her support during that time. I still deal with grief every day, it never goes away, but little things like speaking to Elaine and going to a bereavement support group helped.'

Become a befriender

If you would like to find out more about becoming a befriender, please visit the Action for Pulmonary Fibrosis profile on the Befriending Networks Directory.