We want better care for people with pulmonary fibrosis, who are at high risk of being worse off than before Covid-19.
The time for ACTION is now
Sign our petition
We ask UK politicians and the Secretary of State for Health and Social Care: to fund a health service for people with pulmonary fibrosis (PF) that is equal to cancer care.
We’re calling on politicians across the UK to ensure everyone diagnosed with pulmonary fibrosis has access to all the help, care and information they need – from access to anti-fibrotic treatments, managing breathlessness and help with keeping active. This isn’t a substitute for a cure, but an essential lifeline to make sure no one has to wait in distress, isolation or uncertainty.
We need your help to get this vital support provided as quickly as possible
Can you send a message to your elected representative(s) today and ask them to back our call? We know that politicians listen and respond to their local constituents, so this is the best way to get them to take action quickly on this urgent issue.
More about the change we want to see
Pulmonary fibrosis is on the rise. We warmly welcome the advances in healthcare that are likely to improve early diagnosis of lung scarring.
But, the healthcare system for people living with pulmonary fibrosis isn’t able to cope with increased patient numbers. Covid-19, cost of living crisis, long term under investment in respiratory health are all contributing factors.
What patients and healthcare professionals tell us
- Diagnosis is taking too long. Too many people living with pulmonary fibrosis are misdiagnosed or diagnosed to late as they’ve been unable to see the GP face to face.
- Not everyone with pulmonary fibrosis has the right to life pro-longing treatments at the point of diagnosis. People with idiopathic pulmonary fibrosis have to wait until their lung function drops below 80%. This is not right.
- Access to supportive treatments depends on where you live. With no cure, getting support to manage a chronic cough, breathlessness and anxiety, moving around with oxygen, help to stay active or preparing for the end of your or a loved one’s life is vitally important. But access to the range of support is too variable across the UK. This isn’t fair.
- There aren’t enough specialist ILD nurses. People affected by pulmonary fibrosis tell us they love their specialist nurses. ILD teams tell us their business cases to increase nurse hours are repeatedly turned down. This must be reversed.
Our five point plan can help
- GPs need to better spot the signs and symptoms of pulmonary fibrosis and know there is greater access to anti-fibrotic treatments.
- Policy makers must remove the 80% threshold in lung function tests before anti-fibrotic treatments can be prescribed.
- A united voice. More than anything, pulmonary fibrosis requires people affected by pulmonary fibrosis, clinicians and professionals in the sector to have a shared vision of care and the ability to respond with one voice when things need changing.
- Share best practice. There are many examples of innovation within respiratory healthcare services, ensuring people with pulmonary fibrosis get the timely access to care the treatment they need. We want increased opportunities for healthcare professionals and people affected by pulmonary fibrosis to come together more often, share best practise and support each other to put changes in place.
- Co-design a healthcare journey that is timebound, transparent and holistic. People affected by pulmonary fibrosis and their healthcare professionals want a shared standard of care reducing variation and giving everyone timely access to the very best of care.
What people tell us
As a person living with pulmonary fibrosis, I love my ILD team. But I want them to be well supported in their roles. I want a service that is comparable to cancer care: time bound, transparent and tailored.
You mention cancer and the world is supportive. You mention pulmonary fibrosis and the world knows nothing.
I’m devastated to even say this, but sometimes a patient dies before I even get to see them.