Referring patients to Action for Pulmonary Fibrosis

“I wish I had heard about you sooner.”

This is something we often hear from the people we support. Help us change this by referring your patients, their families and carers directly to us.

Support for you and your patients

A referral can help you deliver the best care and get the most from your clinical time.

There are no requirements for a referral, and our timely support is bespoke to the individual and their family. We welcome referrals from any health or social care professional.

Natalie, an interstitial lung disease (ILD) nurse from Morecambe Bay, says:

The referral takes a few minutes to do, and it helps ease the stress long term and provides a more holistic approach for our patients.

Why refer to us?

We’re here to support you to provide the best care for people diagnosed with pulmonary fibrosis, their families and carers.

We will:

  • Take non-urgent queries to reduce calls to nurse phone lines.
  • Support people affected by pulmonary fibrosis to be confident with self-management and rely less on healthcare professionals.
  • Help people affected by pulmonary fibrosis access expert and peer support so they can better self-manage.
  • Work with ILD teams throughout a person’s journey with pulmonary fibrosis to ensure cohesive and holistic support.
  • Support people to access local services, including hospices, support groups and carer’s assessments.
  • Be part of an ILD network, supporting healthcare professionals to advocate for the best clinical care.

Send information packs to recently diagnosed patients

When you refer to us, we can send a recently diagnosed information pack directly to your patient. Just select the box in the referral form. You can also view and send digital packs online.

Supported by The Interstitial Lung Disease Interdisciplinary Network (ILD-IN), this pack brings support and information to people who have recently found out they have pulmonary fibrosis. The pack can help people with pulmonary fibrosis to:

  • Learn about the disease
  • Get the most from their appointments
  • Know where to get support
  • Feel like part of a community
  • Have their questions answered

What happens when I refer someone?

  1. The person you refer to us will receive a welcome email or letter within one to two weeks.
  2. About a week after sending the email or letter, we follow up with a phone call. We’ve found that most people prefer to have time to digest the information from their appointment before we contact them.
  3. This phone call is a supportive chat about the person’s experiences with pulmonary fibrosis. From listening to their story, we can offer the support and information that they need. That might be details of local support groups, information on benefits, or signposting to another organisation.

We’ll contact you once we’ve spoken to the person so you know the referral has been successful.

Is patient information secure?

Protecting the information of you and anyone you refer to us is our priority. Please see our privacy policy for more information on how we protect your data.