Notes for use These slides summarise the BLF report on our work in 2016. The full report with more detail can be found at www.blf.org.uk/pf. The slides in this presentation can be used publically, so long as the BLF is acknowledged.

Hope, help and a voice for pulmonary fibrosis Our work: Jan 2016 – Dec 2016 www.blf.org.uk/pf

Who we are We empower people affected by lung disease through support, services and information We campaign for healthy lungs and clean air We fund research to find cures and treatments for lung disease

We’re making sure pulmonary fibrosis is a priority blf.org.uk/pf

Patient voice is part of everything we do Over a quarter of our Patient Think Tank have or care for someone with pulmonary fibrosis They provide advice and feedback on key strategic decisions, and their ideas help inform all our work from research to media patientvoice@blf.org.uk

Providing information and support

Launched new Living with pulmonary fibrosis booklet Explains what pulmonary fibrosis is, diagnosis and treatments First clear lay explanation of terminology and classification of ILDs New section on breathing techniques blf.org.uk/publications

Updated our web information Over 250,000 visits in year to our IPF web information Launched new pulmonary fibrosis web hub in Sep 2016, with almost 50,000 visits in first 3 months blf.org.uk/pf

Told patient experiences through our blogs David’s story on living with IPF towards the end of life Now ranking at the top of Google search results internationally for relevant search terms blf.org.uk/your-stories/ipf-final-stages

Organised pulmonary fibrosis support group networking conferences Support group members shared their valuable experiences and learnt more about running a group 64% of local pulmonary fibrosis support groups attended blf.org.uk/support-in-your-area

Provided advice through our helpline One in ten calls to our helpline are related to pulmonary fibrosis We have fully qualified nurses and expert advisers able to help

Raising awareness and influencing

Told patient and family stories through the media Over 100 new articles on pulmonary fibrosis in the media Potential media reach of 180 million

Campaigned to improve services Held ILD care pathway roundtable with 30 experts from across the UK Inc. specialist ILD services, GPs, patient and family members, commissioners and other PF charities Recommendations from this will be used to inform a policy report being published in 2017

Across the UK Wales Represented patients in a new ILD service proposal for Wales and campaigned for implementation. New ILD service was funded by the Welsh Government in April 2016 Scotland Member of the Scottish National Advisory Group for ILDs, to improve the quality of care for patients  Northern Ireland Part of the working group working group that’s considering the future of ILD services in Northern Ireland England Represent patients at NHS England Specialised Respiratory Clinical Reference Group, which writes the specifications for ILD services

Research

Published new data in our Battle for breath report 32,500 people live with IPF in UK Prevalence rate of around 50 cases per 100,000 is over double NICE’s previous estimate of 15-25 cases NICE is the National Institute of Health and Care Excellence British Lung Foundation (2016). Battle for breath. www.blf.org.uk/what-we-do/our-research/the-battle-for-breath-2016 blf.org.uk/what-we-do/our-research/the-battle-for-breath-2016

Funded five new research studies Including: Singing for breathing in idiopathic pulmonary fibrosis Anne-Marie Russell Royal Brompton Hospital Evaluating the effectiveness of singing for breathing in patients diagnosed with a restrictive lung condition – IPF or NSIP. With 12 group workshops over six months. Amount: £10,000 Duration: 10 months

Funded five new research studies Including: A human model of lung fibrosis Dr Katy Roach University of Leicester Ensuring that a model of a human lung with IPF is suitable and can be used to study and develop effective treatments for IPF. Amount: £24,072

We’re committed to fund an extra £300,000 of ILD research by end of 2017 blf.org.uk/your-stories/making-progress-with-pulmonary-fibrosis-research

Thank you to all our supporters who made this possible Mari “Les was everything to me. Losing him was so hard. Pulmonary fibrosis is such an insidious, shockingly cruel condition. That’s why I decided to start fundraising. If the money can go to research which can help other people, then it’s worthwhile.” blf.org.uk/your-stories/falling-from-13000-feet-to-fight-ipf

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