Voice of the Patient Council launches first meeting in IPF World Week
Action for Pulmonary Fibrosis is proud to give a voice to patients with IPF and we now have our own patient council to help us deliver exactly what patients and families need.
The inaugural meeting of the APF Voice of the Patient Council was held on the first day of IPF World Week (Sept 17-24) and brought together people from all over the UK.
Council membership now stands at 24 but if you would like to join we’d love to have you. Click here to sign up to the Voice of the Patient Council.
The Council will meet at least twice a year and members will be in regular contact with APF trustees and staff via email and telephone throughout the year. The focus of the Council is to help APF develop policies, strategies and projects that will achieve our Vision…that everyone affected by pulmonary fibrosis has a better future.
We may ask members to take part in working groups, comment on literature, contribute to reports and surveys or help represent the charity at various events.
The first meeting on Saturday, September 17th included a fascinating presentation on the developments in IPF care and treatment over the years: “IPF – Past, Present…and Future?” – by APF Trustee Dr Simon Hart, Respiratory Consultant at Hull & East Yorkshire Hospitals Trust.
Chair Elect, Karen Hughes, looked back at the charity’s achievement’s over the past three years since it first began and Action Ambassador, Tony Gowland, told Council members of his work for the charity.
Action’s new Support Group Co-ordinator, Lorna McLaughlin, talked about her work supporting existing groups and setting up new groups, working closely with APF Chairman, Mike Bray, who was unable to attend the meeting as he was speaking at the first meeting of a new support group in Dundee.