Support Group Newsletter
APF have produced a support group newsletter which has support group news, updates, tips and stories for patients and families. We will be producing two a year.
Download the Spring Edition of the Support Group Newsletter
Specialist ILD centres in England
You may need access to a specialist ILD centre throughout your treatment so it is important to know where these centres are.
View the specialist ILD centres in England
NICE Guidelines on IPF
An IPF Guideline for medical professionals was approved in 2013 which sets out how diagnosis should be carried out and the treatment and management of the disease that patients should expect.
Download the NICE Guidelines on IPF
View the NICE Guidelines on IPF
NICE IPF Quality Standard 2015
In January 2015, NICE, the National Institute for Health and Care Excellence, issued a new quality standard for the care of people who have idiopathic pulmonary fibrosis.
Download the NICE Quality Standard 2015
View the NICE Quality Standard for Idiopathic Pulmonary Fibrosis published January 2015
PDF versions of some of the key sections on our website
Download the Coping with breathlessness section
Download the Travelling away from home section
Download the Lung transplantation
Download the Hoping for the best planning for the worst by Annette Duck section
Improving care for patients with idiopathic pulmonary fibrosis (IPF) in the UK: a round table discussion
This article is the result of a recent round table discussion held at BMA House chaired by Dr David Thickett. Its purpose was to outline the challenges facing both patients and doctors in managing idiopathic pulmonary fibrosis. A number of recommendations for service development and research have been identified.
Useful links
Read the European Respiratory Journal article “European IPF Patient Charter: an SOS to the world” by
Bruno Crestani.
View GP article about Action for Pulmonary Fibrosis on the Journal of Practice Nursing website
You will need to register on the website to access the article.
Useful websites
IPF World
Rare Disease Day
IPF European Patient Charter
Time for IPF
British Lung Foundation
Pulmonary Fibrosis Trust
www.pulmonaryfibrosistrust.org
The ILD Interdisciplinary Network
The ILD Interdisciplinary Network