A key aim of Action for Pulmonary Fibrosis has been to increase the number of IPF support groups and to make them accessible to as many patients as possible. We have helped to grow the number of patient support groups in the UK from 3 in 2013 to over 60 in 2018. We have a dedicated Support Group Co-ordinator, Lorna McLauchlan, who is actively helping to set up more patient support groups across the UK as we know the educational and emotional support benefits that these groups provide to IPF patients and carers is huge and make such a difference to their lives. Our Trustees, who all have a personal connection to the condition try to visit as many as possible.
Giving you a voice
In the last four years APF has become recognised at the national level, being consulted on issues relating to IPF, we have presented to a parliamentary respiratory group and contributed to NICE consultations and guidance documents. Our previous Chair, Karen Hughes represented patients at a national and global level, she is a core part of the European IPF Advocacy Group which has developed a European IPF Patient Charter to be presented to the European Parliament and spoke in America at a conference focussed on improving IPF research and care. Our current chair, Steve Jones is on the board of the EU-IPFF which is carrying on the European advocacy for better treatment for IPF patients.
Voice of the Patient
In 2016 we created our “Voice of the Patient” Council, placing patients at the heart of the charity. We now have over 30 members – and growing – who represent patients across the UK and help us drive and deliver our work. Our charity Ambassador, and trustee, Tony Gowland, delivers a unique perspective on being an IPF patient and delivers a Voice of the Patient blog series and v-logs.
Raising awareness with the medical profession
The lack of knowledge about IPF amongst the medical profession generally is well recognised and leads to difficulties for many patients when requiring treatment from GPs and local hospitals. There is also a need for more trained ILD nurse specialists. We are a founding sponsor of the newly-formed professional Interstitial Lung Disease nurse network ILD-INN, and we have partnered with them to deliver IPF training sessions to health care professionals in primary care across the UK. The sessions are focused on helping identify early signs of IPF to aid prompt and accurate diagnoses. Action for Pulmonary Fibrosis supports current training and is looking for ways to engage with more non-specialist staff to improve the level of understanding of the disease more widely across the NHS.
We launched The Mike Bray IPF Research Fellowship, a £300,000 grant to fund major IPF research project. The grant that will be awarded over three years to an outstanding research project, which enhances understanding of the causes of IPF or advances treatments. It is named after and in memory of the charity’s founder and former chairman, who passed away earlier this year.
We offer travel grants for young researchers in the field of IPF to attend conferencees all over the World. We are committed to funding much needed research towards IPF and we will be making a significant research investment later this year.