APF Responds to Government Announcement

A purple and yellow graphic with a foghorn to signal a petition update
2
February 2023

Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?

Over 11,000 (and counting) people supported our petition believing the government must do more to support the increased NHS funding required to create a care pathway equal to cancer care.

Unbelievable!  If one is reliant on a GP referral, I can't see diagnosis being speeded up.  It's now around 6 years since my cough started and was reported to the GP who said it would just be due to reflux. But I still have no access to treatment, such as it is with delays in the system.  As usual, the focus is on asthma and COPD.

Anonymous, living with pulmonary fibrosis. February 2023

We know that people with pulmonary fibrosis are being diagnosed after too long, despite presenting with symptoms like increased breathlessness, persistent cough, clubbed fingers, crackles that can be heard via a stethoscope and tell-tale links to occupational or family history.

The government's response references that changes to diagnostic pathways are heavily weighted to people with COPD and Asthma. At APF we remain deeply concerned about the lack of priority being given to people with pulmonary fibrosis to urgently access supportive treatments, such as pulmonary rehabilitation, palliative care and oxygen.

“Along with Bolton PF Support Group (BPFSG) I welcome the recent progress outlined in the response from government after APF’s petition received 10,000 signatures, after many years of inaction.
Because of the inaction, BPFSG is leading the way with Bolton Hospital to introduce satellite clinics, a specialist nurse and timely spirometry and Lung Function Tests to support more patients local to home. 
I am pleased that further action is planned after many years of campaigning on this overlooked disease, in particular on early diagnosis because this is crucial to timely and effective treatment. But to find an actual cure, we NEED more research funding and would welcome the governments urgent support on this matter.”

Carol, living with PF

“The government statement talks about what they are going to do in the future. Plans without any definitive timeliness, no financial costings for care, facilities or treatments in place. Soundbites to satisfy the media and not deliverable plans to satisfy the patients and their loved ones.
 Still, the undiagnosed deteriorate without a treatment plan. The diagnosed deteriorate without urgent access to all medications and patients struggle to access overstretched services such as pulmonary rehabilitation that is mostly tailored to people with COPD.
 Tens of thousands of people become unpaid carers for loved ones with PF without support. Thousands of people with PF continue to work without employers understanding the difficulties they endure.
 AND, the drive for change is being led by a charity. Once again APF, is at the vanguard, challenging, questioning, advocating and pushing back.
 Together with APF, Sue and I will continue to strive for people with PF and their loved ones to access the urgent and timely care they need, just like any deserving cancer patient too. I remain a voice.”

Tony, carer of wife with PF

Clinicians and people affected by pulmonary fibrosis are united in our desire to develop a well-resourced and timely care pathway. We are incredibly grateful to everyone who has raised the profile of pulmonary fibrosis so far via the petition. Our next step is to raise the issues at Westminster. We will continue to keep the pressure on.

Louise Wright, CEO

Read the government's response to our petition here.

See our letter to the Department of Health and Social Care.