Developing an IPF Patient Group in the UK

1. Developing an IPF Patient Group in the UK Helen Parfrey Geraldine Burge

2. IPF Patient Group • Is there a need for a UK group? • What are the benefits of a patient group? • What are the practical issues for establishing a patient group?

3. The benefits and barriers to establishing a patient group Support for patients and carers Fear of meeting people with more severe disease Forum for families to discuss experiences Ability to travel to group meeting Education for patients and healthcare workers Little incentive to get involved with a patient group due to a lack of recommended treatments Promote awareness of IPF Involvement in patient groups is at the discretion of the individual patient Identify needs

4. Practical issues for setting up a patient group • Clearly defined aims and objectives • Methods of communication • Charitable status • Independent group or partnership with existing organisation • Integrate with other pulmonary fibrosis groups

5. Objectives to be patient focused • Support • Education • Research – clinical trials network, scientific committee • Raising awareness – lobbying, media, IPF day • Social and recreational activities • Fundraising activities

6. Communication • Website • Newsletter • Leaflets • Patient Information Days • Local group meetings

7. What is needed to set up a patient group? • People to set up and run the group • Register for charity status (income ≥ £5000) • Voluntary organisation • Benefit to the public • Objectives comply with charities act • Trustees • Governing document • Marketing - name, brand, logo • How to raise funds for running charity?

8. What resources already available?

9. Challenges to face • Demonstrate need for patient group • Considered rare disease • Number ofpeople with IPF • Maintain momentum • Financial constraints

10. Is there the need for an IPF patient group?