People with IPF shouldn’t be ignored

Steve Jones is the chair of Action for Pulmonary Fibrosis (APF) and a member of the Taskforce for Lung Health. He had idiopathic pulmonary fibrosis (IPF) for 8 years and received a lung transplant in 2016.

Steve Jones

After I recovered from my lung transplant, I wanted to give something back. I joined APF as a trustee and for the last 2 years I’ve been the chair. I represent APF and pulmonary fibrosis patients on bodies such as the Taskforce for Lung Health.

What the Taskforce wants for people with IPF – and how we can do more

The Taskforce for Lung Health has 2 main recommendations on IPF:

  • to work together with the government and the pharmaceutical industry to improve patient access to anti-fibrotic drugs
  • to fully implement the NICE quality standard to ensure people living with IPF have access to beneficial supplementary oxygen. This involves revising the British Thoracic Society’s guidelines on oxygen therapy to take full account of IPF patients

The Taskforce for Lung Health also makes other recommendations on early diagnosis and pulmonary rehabilitation (PR).

Getting oxygen therapy guidelines right is also very important for people with IPF. It’s concerning that some community nurses don’t realise the importance of oxygen for people living with pulmonary fibrosis or understand how rapidly their oxygen needs can change. They’re used to dealing with COPD patients, whose needs are different.

More often than not, health policy focuses mainly on COPD, lung cancer and asthma. We want the needs of people with IPF and pulmonary fibrosis to be addressed as well. It’s hard to believe, but in some parts of the country, people with IPF are still refused PR - because they don’t have COPD!

People with IPF shouldn’t be ignored

IPF progresses rapidly, with people living on average only 3 - 4 years after diagnosis. There are 2 drugs available that can slow progression and extend life by up to 2 years. 

It’s unfair and illogical that IPF patients have to wait until their lung function has fallen to 80% before being given one of these medicines. About one third of patients diagnosed with IPF are in the early stages of the disease and have a lung function over 80%. They would benefit enormously if drugs could be prescribed on diagnosis.

IPF is the fourth biggest respiratory cause of death in the UK. And the number of people diagnosed with IPF is increasing every year.

Despite this, some IPF patients feel they are invisible when they see the huge amount of resources and attention paid to patients with other long-term conditions, including other respiratory conditions. That’s why it’s so important that the needs of people with IPF are included in the Taskforce’s work.

Support our research during IPF week 2019

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13 September 2019