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

2. Hope, help and a voice for pulmonary fibrosis Our work: Jan 2016 – Dec 2016

3. 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

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

5. 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

6. Providing information and support

7. 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

8. 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

9. 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

10. 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

11. 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

12. Raising awareness and influencing

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

14. 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

15. 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

16. Research

17. 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 cases
NICE is the National Institute of Health and Care Excellence
British Lung Foundation (2016). Battle for breath.
blf.org.uk/what-we-do/our-research/the-battle-for-breath-2016

18. 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

19. 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

20. 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

21. 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 feet-to-fight-ipf

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