What you need to know about our IPF statistics

Our new research shows that approximately 32,500 people are living with IPF in the UK. This is more than twice as many as previously thought.

The number of people diagnosed with and killed by IPF each year are also higher than previously thought (6,000 diagnosed and 5,300 killed, compared to the previous figure of 5,000 for both). IPF accounts for around 1 in 100 deaths, and kills more people than conditions like leukaemia and skin cancer.

Given this new understanding of the impact of IPF, we need urgent action to tackle IPF in the UK: more investment in research, better patient access to specialist nurses, and more joined up care between primary care and specialist services.

Look at our IPF statistics in full, or read our quick summary below.

What you need to know

Incidence: 32,500 people live with IPF in UK. Official figures from NICE previously estimated up to 15,000 (NICE, Idiopathic pulmonary fibrosis in adults).

Prevalence: There are around 6,000 new cases diagnosed a year, which is more than the estimate of 5,000 a year commonly used previously (Navaratnam et al).

Mortality: IPF kills around 5,300 a year. This is slightly more the 5,000 a year previously thought (Navaratnam et al). This equates to almost one in 100 UK deaths - and is more than much better-known conditions such as leukaemia, stomach cancer, liver cancer and skin cancer.

Impact on health services: There are nearly 9,000 admissions and 86,000 hospital bed days accounted for by IPF. Although the total impact on health services is relatively low, the impact for each person living with pulmonary fibrosis is higher than for most other lung diseases.

Gender: IPF is around 60% more common in men than women, which is in line with previous research.

Age: IPF can affect people of all ages, but around 85% of diagnoses are made in people aged over 70.

Regional variation: IPF is most common in north-west England, Northern Ireland, Scotland, and Wales. This may be due to links with heavy industry, but the reasons are not fully known.

Link with social deprivation: IPF incidence does not seem to be affected by socio-economic status, which is unexpected due to suspected links with heavy industry. Further research is needed to confirm this and look into the reasons why.

How do we know all this?

These data are the first that we've released from our 3 year epidemiological study.

This study looked at incidence, prevalence, mortality, hospital admission and bed usage data from a range of sources. It included breakdowns by gender, region, age and levels of social deprivation.

They will be published alongside similar data for all lung diseases as part of our major new report next month.

Does this mean rates of IPF are rapidly increasing?

We don’t know whether these figures show that IPF rates are rising or whether this is just a more accurate picture than we’ve had previously.

What we do know is that they show more clearly than ever before that tackling IPF needs to be made a priority in this country.

What needs to happen now?

Supporting people with IPF

This adds more weight than ever to our calls for IPF care in this country to be improved.

We need NICE Guidelines to be followed in full.

We need better signposted pathways of care with rapid access to specialist centres to ensure accurate, early diagnosis and treatment.

Everyone with IPF should be given access to a specialist nurse to help them manage their disease.

This is the kind of attention IPF patients would receive if their disease were a cancer. There is no reason why, given the symptoms and reduced life expectancy associated with IPF, they should continue to endure a lesser standard of access to care.

Research

We still don’t know what causes IPF. There’s no cure – and it usually kills in just 3 years.

It kills more people a year than conditions such as leukaemia.

Yet while over £30m is invested in leukaemia research a year, barely £600,000 is invested in IPF research. This urgently needs to change.