Our IPF project

Our IPF reports

We've produced reports into IPF in England and Wales.

England

Our IPF report for England draws on the first-hand experiences of patients to provide a comprehensive review of IPF care.

The report, which reflects our ongoing commitment to improving IPF care across the country, makes 3 simple recommendations for transforming IPF patient care:

  1. All those providing IPF services to follow NICE guidance (including the quality standard and guidelines) and pathway.
  2. All patients to be given Information Standard-approved information on IPF at the point of diagnosis.
  3. All patients to have access to a specialist ILD nurse to help them navigate their care.

We'd like to thank all patients, carers, nurses and NHS Trusts that responded to our surveys and helped shape the report.

Download our IPF report (PDF 5.24MB)

Wales

Our report looks into the health care experience of people with idiopathic pulmonary fibrosis (IPF) living in Wales.

Patients told us that they struggled to get diagnosis, felt that GPs and other health care professionals had little understanding of their condition, and felt they did not get the support and information they needed.

The Welsh Government’s Respiratory Health Delivery Plan gives a commitment that IPF patients are managed through specialist multidisciplinary team, and that the National Institute for Health and Care Excellence (NICE) guidelines for IPF are implemented.

The Delivery Plan offers a once-in-a-generation opportunity to transform services for IPF. Yet, it appears the needs of IPF patients are not fully being met in Wales.

The report concludes that:

  • More funding for this year, and subsequent years is needed to develop tertiary services and other ILDs
  • All patients need to be given high-quality and accessible information on IPF at the point of diagnosis
  • All patients should have access to a named specialist nurse and consultant with a specialism in ILD

Download our report:

Download our patient experience report (English, PDF 384KB)

Adroddiad ar Brofiad y Claf yng Nghymru (Cymru, PDF 376KB)


Inspiration - IPF report

Boehringer Ingelheim, working with pharmaphorum media, has launched the Inspiration report into IPF. Patients, clinicians and IPF experts highlight the issues facing people with this condition in UK.

Our IPF Project Manager Ruth Sabella looks at what can be done by the government and health care providers to improve quality of care and mortality rates.

Inspiration IPF report - February 2016 (PDF 8MB)