What Do You Know About Your Rights As An IPF Patient?

In 2013, the British Lung Foundation (BLF) released a Patient Charter for people living with IPF, or idiopathic pulmonary fibrosis. In it, they outline the five basic rights of people with the lung scarring disease. What are they?

  1. Timely and accurate diagnosis and care by skilled specialists
  2. Seamless health and social care services (i.e. providing oxygen)
  3. High quality information about IPF, support services, and the three T’s: Treatments, Trials, and Transplants
  4. End-of-life care
  5. Peer support networks

That sounds like a pretty good list to me.

Anyone living with a chronic or serious illness should at least have the right to be well-informed about their disease and treatment options, and they certainly should have the right to be heard when it comes to treatment decisions.

Of course, that’s assuming they’re getting treatment in the first place.

The BLF may have felt the need to release their charter in the first place because so many people in Wales who are living with IPF have had significant challenges getting a diagnosis and receiving treatment. In fact, in their subsequent report Shining a Light on IPF, the BLF said:

“Patients told us that they struggled to get a diagnosis, felt that GPs and other health care professionals had little understanding of their condition, and felt that they did not get the support and information they needed.”

Citing reports from 2008 to 2014, the pitfalls standing in the way of reasonable care were identified:

  1. A diagnosis must come from a multidisciplinary team, but in order to see a multidisciplinary team, a patient must first be referred by their GP.
  2. Because IPF symptoms can mimic other conditions, GPs might mistake “breathlessness” for asthma or anxiety, and delay referral to multidisciplinary teams.
  3. Few patients are familiar with IPF prior to their diagnosis or might not recognize the seriousness of their symptoms, and therefore don’t push for a referral if their GP doesn’t first suggest it.

Currently, it’s estimated that 15,000 people in the UK live with IPF, and the amount of people developing it every year is only going up.

James Ernest Cassady

James Ernest Cassady

Though "Ernest" is a family name that's been passed down for generations, James truly earned his middle moniker when, at the age of five, he told his mother that "laughing is stupid unless EVERYBODY is happy." Since then, the serious little bastard has been on a mission to highlight the world's shortcomings (and hopefully correct them). In addition to his volunteer work at hospitals and animal shelters, James also enjoys documentaries and the work of William Faulkner. He is originally from Oklahoma.

Follow us