What is OneVoiceILD?

We are stronger when we speak as One Voice.

  • OneVoiceILD looks to drive transformative system change within the NHS to improve ILD and PF care. That means we're reimagining how the system fits together to be more efficient and provide better outcomes.
  • Building from the issues highlighted in our survey, we're proud to have collaborated with a Lived Experience Panel to develop essential guidance in the form of an Integrated Care Pathway.
We believe that the patient voice should be at the heart of everything we do.
                            - Bradley Price, Director of Policy and Public Affairs at APF

Our newly published INTEGRATED CARE PATHWAY is one way we will drive change to ensure:

  1. DIAGNOSIS is faster and more accurate
  2. MANAGEMENT of your condition is consistent, with more care available closer to home
  3. ACCESS to support is available at all stages of your journey, wherever you live.

How does it work?

We believe in the power of OneVoiceILD to create real change for those whose lives have been affected by PF.

To harness this power and ensure we are as effective as possible, we have put together a Steering Group. This is a committee, who will provide strategic direction ('steer') and oversight to OneVoiceILD.

The work of OneVoiceILD will be divided up and focused on by working groups, with members of each group contributing their skills and experience to overcome specific challenges within ILD services.

We will continue to work closely with those affected by PF and ensure that nothing intended for you is developed without you. To keep the lived experience at the heart of all of our activities, we are also setting up a Lived Experience Panel to work side by side with the clinicians, commissioners, researchers end other respiratory professionals in the Steering Group.

We need this change; I don’t want anyone to have the same experience I did.
                                         - Chris, a supporter diagnosed with PF in 2022

Has your life been impacted by PF? Join our Lived Experience Panel

All of the work on the care pathway has been informed by the experiences of patients, carers, friends, families, and all those affected by PF. However, it is still vitally important to ensure our efforts don't just sound good in theory, but create the change we need in practice.

Joining our Lived Experience Panel will help to guide and shape future change and, keep OneVoiceILD on track to create the PF services you want to see. Visit the Share Your Experience page to find out more.

Not found what you are looking for?

If you have any questions about the Lived Experience Panel or want to get involved, please see further information here or OVILD@actionpf.org.