APF Patient Survey Report 2018

February 2019
Action for Pulmonary Fibrosis has led the largest ever survey of people living with idiopathic pulmonary fibrosis (IPF) – an incurable lung disease which kills 6,000 people each year – in the UK has discovered high levels of misdiagnosis. The report, Giving Patients a Voice has been published (12 March 2019).

What did the report find?

  • More than a third of respondents to the survey (35 percent) had been misdiagnosed, most commonly by general practitioners who commonly assume the patient has asthma, chronic obstructive pulmonary disease (COPD) or cardiac problems.
  • Over half (54%) of IPF patients wait more than six months to be diagnosed. One fifth of respondents (20 percent) took more than two years to be diagnosed correctly. This is a tragedy given that life expectancy is only 3-4 years.
  • IPF kills more people each year than leukaemia, brain or stomach cancer yet receives only a small amount of research funding – making it one of Britain’s ‘hidden killers’
  • Specialist nurses: Almost a third of patients (29%) lack access to a specialist nurse. Those who have access do not always receive the full level of support they need.
  • Pulmonary rehabilitation: Only 53% of IPF patients have completed a course of pulmonary rehabilitation (exercise and education classes) and only 14% receive pulmonary rehabilitation tailored to the needs of IPF patients.
  • Feeling well supported: Only 63% of patients feel well supported in managing their IPF, a drop from 76% in the last survey in 2015

Following this research, Action for Pulmonary Fibrosis is calling for increased focus on earlier diagnosis and investment in respiratory specialist nurses.

Steve Jones, Chair of Action for Pulmonary Fibrosis said:

“Action for Pulmonary Fibrosis is calling on NHS England to prioritise improvement in the rate of diagnosis for this condition. We also want to see renewed commitments to specialist nurses as part of the upcoming workforce implementation plan. We’re encouraged by the recent announcements in the NHS Long Term Plan and will be taking our recommendations on earlier diagnosis and workforce to the NHS, the Department of Health and Social Care and the UK Parliament.”

What did the report recommend?

  • Speedier and more accurate diagnosis so that IPF patients can start treatment sooner. This will require raising GPs’ awareness of IPF, providing them with new diagnostic technologies and reducing waiting times for appointments at specialist and general hospitals.
  • Better access to specialist nurses, who are fundamental to good quality IPF care. This will require increasing the number of nurses in specialist hospitals and increased training for respiratory nurses about IPF.
  • Improved access to pulmonary rehabilitation (exercise and education classes), which is an effective treatment for IPF patients. This will require clinical commissioning groups to prioritise funding pulmonary rehabilitation classes.

Professor Gisli Jenkins
NIHR Research Professor at University of Nottingham

“We need to raise GPs’ awareness of IPF, and provide them with new diagnostic technologies and invest in research if we are to ever to find a cure. We also need to reduce waiting times for appointments at specialist and general hospitals, so that people can be fast tracked into treatment, given these are more effective at an earlier stage in the condition”

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