We have received well in excess of 700 submissions and we’re now analysing the results.
Some preliminary conclusions should be available early in September so look out for announcements especially in IPF Week starting on September 15th.
In July 2015, Action for Pulmonary Fibrosis (APF) launched its first patient survey. We wanted to understand the extent to which the NICE Quality Standard was being implemented and benefitting people living with Idiopathic Pulmonary Fibrosis (IPF).
More than 300 patients and 18 hospital trusts across the UK participated in the survey. The launch of the 2015 report had a significant impact. It helped to shine a light on the quality of care received by IPF patients and played a key factor in the NHS strengthening its Interstitial Lung Disease (ILD) service specification.
Three years later, APF is conducting a reassessment of the state of care for IPF patients in the UK and we need your help.
The Survey has now closed.
What do we need?
Our 2018 survey aims to assess if care of IPF patients has changed since 2015 and to identify where greater effort is needed by the NHS. We also want to understand how changes in the NHS, over the last three years, have impacted on people living with pulmonary fibrosis and how the needs of the IPF community are evolving.
Responses will be analysed and a report published setting out a series of recommendations for healthcare leaders and policymakers. As was the case in 2015, we hope to raise awareness of the issues facing people living with IPF and to help to improve the care the NHS provides.
We are seeking responses from all parts of the United Kingdom. Whether you live in England, Wales, Scotland, or Northern Ireland – we want to hear from you!
How can you help?
Given your experience of living with IPF, we would really appreciate it if you could take ten minutes to complete the survey, which can be accessed using the link at the bottom of this page.
The survey should be completed by IPF patients or somebody acting on their behalf who is their main carer. The survey can also be filled in for patients who have passed away from IPF on or after 1st July 2017 and who was their main carer. All responses are completely anonymous and confidential so please do not provide any personal information in the box at the end of the survey.
The deadline for responses is 5pm, Friday 13 July. Following this date, the online survey will close and the results will be analysed. Action for Pulmonary Fibrosis is working with MHP Health, a specialist health policy and communications consultancy on analysing the results and preparing a summary report.
Action for Pulmonary Fibrosis continues to work towards a better quality of life for pulmonary fibrosis patients and their families.
Thank you for your support.