Giving people like me a chance to make their voice heard

John has idiopathic pulmonary fibrosis, or IPF. He explains how he's making a difference.

I was diagnosed with IPF in 2015. Since then, I’ve tried to help raise awareness of this little-known but deadly disease among the public, health care professionals and politicians.

My diagnosis was a big shock. I've never smoked and I’m relatively young, but I've since found that that doesn’t count for much. I've also found that there are large gaps when it comes to IPF and other lung diseases: gaps in knowledge, gaps in research, gaps in funding, gaps in treatment and gaps in support for patients.

IPF has no cure. It’s life-limiting at best and severely life-shortening at worst. These gaps shocked me almost as much as my diagnosis.

Despite the high number of people living with lung disease, the approach to dealing with it lags behind other diseases like cancer. Over 32,500 people live with IPF in the UK today - a huge number for what’s considered to be a rare disease.

I know there’s been great progress in the diagnosis and treatment of cancers. That’s meant much-improved outcomes and survival rates for people living with those diseases. Things have got better partly because the government and health system have come up with a strategy. IPF has a worse outlook than many cancers, so why can't we learn from the successful approach to cancer and apply the lessons to lung disease?

When I was asked to join the Taskforce for Lung Health, I felt obliged to help give everyone living with any lung condition a voice. I’m involved with a support group for people like me at my local hospital and that means I think I’m in a great position to help.

I really hope that the Taskforce will have a real and lasting impact. I hope it’ll improve diagnosis and treatment. I hope it’ll mean that we can come up with a better plan for preventing lung disease in the first place. I’m worried about how common lung disease is becoming, so it’s important to stop people getting it in the first place.  

The Taskforce for Lung Health represents so many different organisations with different perspectives, and that can only make it more likely that we’ll change things for good.

So much more needs to be done to understand what lung health really looks like in England. That means we need to work out how to diagnose people early, what treatments are best, and how people can access those treatments in a fair and equal way. Getting great treatment shouldn’t depend on your postcode.

The Taskforce really cares about people’s own experiences and it gives everyone living with a lung condition an opportunity to tell our story.

They want to know about what’s helped me on my journey. They want to know what we need to do more of and what to do less of. They want to know how I coped with my diagnosis. And you can make your voice heard too. Think about your own experiences and tell the Taskforce about them. If you’re a carer or relative of someone with a lung disease, you should share your experiences too. Together, with the Taskforce’s help, we can achieve a better future for lung health and patients like me.


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30 April 2018