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Launching our IPF report

Penny talks about launching our report in Parliament.

Like most people, you’ve probably heard of the most common respiratory diseases: asthma, bronchitis and lung cancer. But there are other, less well-known lung conditions that are also in urgent need of attention.

Respiratory diseases are among the leading causes of death worldwide. In the UK, they affect one in five people, and are the third most common form of death.

This week we held an event in Parliament with MPs from across the political parties, as well as people living with IPF, their families, carers and health care professionals, to help tackle one of those rarer conditions: idiopathic pulmonary fibrosis.

When you have IPF, inflammation or scar tissue builds up in your lungs, making them thick and hard. This build-up of scar tissue is called fibrosis. As your lungs become stiffer and lose their elasticity, they are less able to take oxygen from the air you breathe. It’s a chronic, progressive lung disease that affects around 15,000 people in the UK, and will kill around 5,000 people this year.

All these people joined us to launch the first ever IPF patient experience report, which we’ve called Lost in the system. We’ve spoken to more than a hundred people with IPF, and the people who look after them, from around the country about their views and experiences. A number of people reading this will be among them. If this includes you, thank you for helping us make the voice of those affected by IPF – your voice - heard in parliament.

We’ve also taken in information kindly provided to us by a number of NHS Trusts throughout England.

The result is a report that covers some great inroads that are being made to fight this disease. In June 2013, the National Institute of Health and Care Excellence (NICE) published its guidelines for how IPF should be treated. And last month they published their quality standards, which are designed to drive improvements in the quality of care given to people with IPF.

Both of these publications were positive milestones for people with IPF, their families and carers, and today we reach another milestone for IPF. However, our IPF report also highlights a number of discrepancies between the standards of care that are recommended by NICE, and the standards that many patients are experiencing in practice.

We’ve heard from people who had to wait a long time to be diagnosed. People who couldn’t get access to the information about the disease that they needed. People who weren’t offered the right assessments for oxygen therapy, who didn’t get the access to exercise support that they needed, or who found their care disjointed and uncoordinated.

This all needs to change if we are to seriously tackle this disease. For a long time IPF was neglected in relation to other diseases that affected similar numbers of people.

Whilst improvements to IPF care are being made, there is still a disparity between what care should look like in this country and the reality for many  people. This is something we must change. And though this change will take time, by working with doctors, nurses, people with IPF, carers and politicians - as we have done today - we will make that happen.

You can download our IPF report to read about all our findings. We rely on your donations for campaigns like this - can you make a contribution today?


This survey shocks me to the core and yet as a NHS worker I was not aware of this condition until my father in law was diagnosed with IPF in August 14. However , GP sent him for cardiovascular tests rather than a lung x ray . Unnecessary delays followed before x ray organised and eventual referral to consultant. Now in a major teaching hospital and referred to GI specialist but GP dilatory and no help from ILD respiratory nurse or pulmonary rehab despite repeated requests. Seems lack of knowledge and because no known cure that it is indeed a patient suffering and as you say, lost in the system.

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26 February 2015