This year our campaign is called: Listen To Our Lungs
Download our campaign pack today or call us for printed copy on 01543 442152
APF is asking you to raise awareness of the disease in your own community and particularly with GP surgeries in your area. Every GP practice in the UK needs to know the five signs and sounds to look out for and what to do next.
Our recent survey of patients revealed that more than a third of patients with idiopathic pulmonary fibrosis (the most common form of pulmonary fibrosis) are misdiagnosed and almost half not diagnosed correctly within six months of visiting their GP with symptoms.
During September, we would like you to contact GP surgeries in your area and provide them with the information and support they need to recognise the signs of pulmonary fibrosis.
Contact your local GP surgery
Contact GP surgeries in your area with the personalised template (this is written with support groups in mind but please adjust if you send this as an individual) and links to contact details for general practices in the UK, Wales, Northern Ireland and Scotland.
We also have merchandise for you to order and posters and notecards about recognising the signs of pulmonary fibrosis on our website for you to print and take or send to GP surgeries.
You’ll need access to the internet, a colour printer, envelopes and stamps or email.
Contact GP surgeries in your area with the personalised template
- Northern Ireland – https://www.nidirect.gov.uk/services/gp-practices
- Wales – https://www.nhsdirect.wales.nhs.uk/LocalServices
- Scotland – https://www.nhsinform.scot/scotlands-service-directory/gp-practices
- England – https://www.nhs.uk/Service-Search
1) Contact the Patient Participation Groups within GP surgeries to ask them to raise the issue of misdiagnosis and late diagnosis with their own practice. You could offer to do a talk, send them posters and materials from the EU-IPFF website and share your own story.
Please let us know if you’ve contacted any of the above so we can monitor our campaign by emailing firstname.lastname@example.org
2) Contact your local & regional media about the campaign. See our template press release and a guide to working with the media which is written with support groups in mind. You can adapt it if you are sending it as an individual patient or family member.
3) Fundraise for Action for Pulmonary Fibrosis and help us find a cure, educate healthcare professionals and set up more support groups across the UK. You’ll find some fundraising ideas and download merchandise order form.
IPF World Week – 14 – 22nd September
You could get involved in the campaign at any time in September but you may want to focus on the special week that highlights Idiopathic Pulmonary Fibrosis – the most common and aggressive form of the disease which has no known cause. IPF World Week is September 14-22. It is spearheaded by The European Idiopathic and Related Disorders Federation (EU-IPFF) in collaboration with charities and patient associations – including Action for Pulmonary Fibrosis – across Europe.
Here is a link to the APF Patient Survey Report –
https://www.actionpulmonaryfibrosis.org/2019/hiddenkiller/ – this link shows the evidence of misdiagnosis and late diagnosis.