Thought For The Week #2 | with Chair of Trustees Steve Jones

4
January 2021

Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?

Each year about 8,000 people in the UK die of pulmonary fibrosis - 5,500 people from idiopathic pulmonary fibrosis (IPF) and 2,500 from other types of progressive pulmonary fibrosis . Pulmonary fibrosis accounts for 1.5% of all deaths in the UK.

Despite this, the general public is often unaware of pulmonary fibrosis.

Almost everybody has heard of leukaemia, which kills under 5,000 people each year, but few people know about pulmonary fibrosis.

If you were to walk down your local high street and ask 100 people if they have heard of pulmonary fibrosis, I doubt whether more than 10 people would say ‘yes’. If you then asked those 10 people to tell you something about the disease, hardly anybody would be able to do it.

It’s as though we are invisible. This lack of awareness makes it difficult to discuss our illness with family and friends and can lead to feelings of isolation and loneliness.

But, it’s not just the general public. It seems, at times, that some health care professionals do not know enough about the disease. GPs too often fail to recognise the signs and symptoms of fibrotic lung disease, which delays referral to hospital for diagnosis and treatment. Similarly, many nurses need awareness training on diagnosis and treatment of the disease.

Let’s make 2021 the year when we change this!

Over the last few years we have managed to get stories on pulmonary fibrosis inro the national, regional and local press, on the TV news and radio. We have also become more active on social media. But, we need to do more!

Let’s make it our New Year’s resolution to get a story about living with pulmonary fibrosis into our local press and media. And, let’s use fundraising events both to raise money and educate those attending about what it is like to live with this devastating disease.

If you need support in sending your story, emma@actionpf.org. would be delighted to help you.

Steve Jones

Chair of Trustees

4th January 2020