Action for Pulmonary Fibrosis launched its own patient survey in July 2015 to discover to what extent the NICE Quality Standards had impacted care at ground level for patients.
This survey is the most comprehensive national study undertaken to date into the effectiveness and reach of the NICE Quality Standard across the UK IPF patient population.
We have published the report on the survey to coincide with IPF World Week. APF were supported by Roche Products Ltd. and MHP Health in its development.
The findings point to evidence that good care is not consistently experienced by IPF patients across the country as best practice is not implemented equally across all regions.
Patients endorsed these support services as invaluable in the management of their condition, improving symptoms, independence and personal confidence as a consequence. The provision of a specialist ILD nurse to facilitate access to each stage was particularly highly valued.
What must now be done?
APF proposes to work closely with the NHS and policy-makers to ensure that best practice is better distributed and that every IPF patient gets prompt access to the kind of supportive, ongoing care that they need and are entitled to.
We would propose such action as:
1. An update of the service specification alongside the Quality Standard ensuring that local access to PR, oxygen therapy assessment and availability of treatment information is improved
2. Emphasis to expert clinical teams of the need for patient access to a named specialist ILD nurse with specific IPF training throughout their care plan
3. Creation of more designated specialist centres driving the development of ILD networks to guarantee integration of treatment
How you can help us
We would be grateful of your help in highlighting the issue on social media and by contacting your local paper or MP. We are confident that together we can really make a difference to the quality of patients’ lives right now and in the future.
You can find out who your MP is, and their contact details, here. You can use our letter template to give you some ideas about what to write, and we would encourage you to talk about your own personal experiences about IPF care in your area.
Please click here to download our template letter to MPs which you can edit as you wish.
Thank you for taking action for the thousands of patients suffering from IPF.