Although progress is being made in treating pulmonary fibrosis, we are a long way from really effective treatments or a cure

The idea of people affected by illness or loss coming together to form groups to help each other was spearheaded by Donald Macmillan, after losing his father to cancer in 1911. The society he formed grew into Macmillan Cancer Support. Donald Macmillan was a trailblazer who realised that peer support could hugely improve outcomes for patients.

Cancer support is now well developed across the UK yet, for those suffering from many incurable diseases, there is little support available. Pulmonary fibrosis, a progressive lung scarring disease, affecting over 70,000 people in the UK, is one of those diseases. This is why the charity Action for Pulmonary Fibrosis (APF) is spearheading the development of pulmonary fibrosis support groups across the UK.

 

Pulmonary fibrosis support groups are more accessible

 

Working with healthcare professionals and patients, APF has helped grow the number of groups from five in 2013 to 65 today. It aims to have 100 support groups up and running by 2020, so that no pulmonary fibrosis patient will live more than an hour away from a support group.

 

Average life expectancy after IPF diagnosis is three years

 

To be diagnosed with pulmonary fibrosis, is devastating. The prognosis for Idiopathic Pulmonary Fibrosis (IPF), the most common form of the disease, is worse than for many cancers with an average life expectancy of only three years. As the disease takes hold, you become more and more breathless – unable to climb stairs or walk more than 50 or 100 metres on the flat, without resting. You become dependent on supplementary oxygen. Your world closes in on you and you feel isolated. Who can you turn to for help?

 

When your world is shrinking, you need support

 

I speak from experience in saying that the impact of support groups, for many patients, can be life-changing.  I lived with IPF for many years. Joining my local support group transformed my life. I met other patients and their families and felt less alone. I felt supported by other patients and could in turn support them. I learnt more about my disease and felt empowered to manage it better. In the end, I was extremely lucky and received a lung transplant. Sadly, few patients are so fortunate.

Although progress is being made in treating pulmonary fibrosis, we are a long way from really effective treatments or a cure. Patients must battle on in the knowledge that the best they can hope for is that current drug therapies may delay the inevitable. A support group can do so much to help them cope well with that reality.

One of APF’s founding trustees was Wendy Dickinson whose father, Nottingham Forest Football Manager, Peter Taylor, who won two European Cups with his partner Brian Clough, died from IPF in 1990. She says: “when I visit support groups, it is wonderful to see new people walk out of the room after a couple of hours with a smile on their face, even though they may have felt desperate when they walked in. Groups offer advice, information and friendship and, most importantly, the chance to talk to people who are sharing your difficult journey.”