We worked together to make a difference in IPF World Week 2017!
In IPF World Week we had a plan; to bring the entire IPF community together to raise awareness of IPF and to help those who are affected.
Over the course the week we reached out to you on social media, on our website and in person and in turn you showed your support for us by holding events all around the UK and by fundraising and donating.
So what did we do in IPF World Week to make a difference?
We launched The Mike Bray IPF Research Fellowship
The £300,000 Fellowship will be awarded over three years to an outstanding research project, which enhances understanding of the causes of IPF or advances treatments. The funding has been raised purely through the commitment and generosity of individual fundraisers and those who have made donations in memory of a loved one, often at a very difficult time in their own lives. Our supporters told us how important it was that the money they raised went towards research – we listened. We are hugely grateful to all our supporters who have made this significant contribution possible.
We held a Voice of the Patient event and listened to and learned from patients, families and carers about how we could best support them
To mark the start of IPF World Week, Action for Pulmonary Fibrosis hosted a Voice of the Patient charity day to listen to and learn from patients. Over 50 patients and fundraisers attended the day at The Belfry Hotel. Trustees and APF support staff presented charity news and held a very productive session listening to the experiences from you – the patients, carers and families. We learnt that you would like us to focus on ways we can help provide support for carers and loved ones of patients, during what can be a challenging and often overwhelming time. Patients told us how important the dialogue with their doctors was both at the initial stages of diagnosis and during follow-up care. It was felt that further education of GPs at primary care level would make a real difference to the patient experience and lead to better outcomes.
We shared personal stories about how IPF has had a devastating impact on families and loved ones
IPF has a devastating effect on those left behind. We heard from many of you about how late diagnosis can cut short the life of loved ones. Stephen Morgan-Hyland shared his story with us about his dad Tony Hyland who received an IPF diagnosis just nine days before he died.
We joined the global campaign “Listen for the Sounds of IPF” with the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF)
The campaign highlighted the importance of recognising early signs & symptoms of IPF and of accelerating patient referral to a respiratory specialist. We shared infographics about symptoms to look out for as well as the ideal diagnostic path. We know how important this issue is to you and that more needs to be done to educate doctors so that they recognise symptoms of IPF at an earlier stage.
We joined forces with two other leading charities to ask the Minister for Health to work with NICE to make anti-fibrotic drugs available to more IPF patients
Action for Pulmonary Fibrosis joined forces with two other IPF charities, the British Lung Foundation and the Pulmonary Fibrosis Trust to ask the Health Minister Lord O’Shaughnessy to make anti-fibrotic drugs available to all patients who could benefit.
Currently, the two drugs available – Pirfenidone and Nintedanib – can only be prescribed for people whose lung function is between 80% and 50%. This despite the fact that one third of IPF patients are in the early stages of the disease. Such patients still have over 80% lung function and would benefit from the drug.
APF strongly recommends that NICE should change its guidance to make anti-fibrotic drugs available to all diagnosed IPF patients.
We launched our new materials for healthcare professionals to help patients and families
As part of our commitment to educating and helping healthcare professionals we launched some new useful materials for HCPs. We developed a leaflet called “Pulmonary Fibrosis We are here to help” for HCPs to give to patients when they have just been diagnosed. We have also produced a poster that can be put up on hospital and clinic notice boards to let patients and families now about our charity, what we can offer them and where their local support group is. We also refreshed our main charity leaflet – it now has more up to date information about pulmonary fibrosis, our charity, our achievements and our aims.
We promoted our inspiring nurses lecture series in partnership with the ILD INN to educate nurses
We have teamed up with the ILD INN to deliver a lecture series about how to detect and recognise early symptoms of IPF in patients presenting to their GPs for the first time with what can often appear to be a chest infection or persistent asthma. We delivered lectures inn 2017 all over the UK to groups of nurses and in IPF Week announced that we will be continuing the series in 2018. The presentations delivered by the ILD specialist nurse committee feature vital facts and latest research info to help practice and community nurses to spot early symptoms and thereby speed up time to and accurate IPF diagnosis. This helps to make sure that IPF patients can start on their treatment pathway at the earliest possible opportunity.
We shared your wonderful pictures from events you held all over the country to raise funds and awareness for us!
Your support has been phenomenal! You have held events all over the country in support of our charity and IPF World Week. Nurses and support group members have held awareness stands in their hospitals and we sent out over 3000 IPF Week wristbands to supporters to help spread the word. It really has been a team effort from the entire IPF community and we have had the most successful awareness week yet. Thank you to everyone who wore a wristband, took part in an event, baked a cake and talked about IPF on social media. #UNITE4IPF