The group was founded in 2011 with the principal aim of establishing a forum to promote discussion among patients and family members affected by pulmonary fibrosis and to provide information. The initiative for the group came from ILD Specialist Nurse, Emma Harris, and interstitial lung disease (ILD) Consultant, Dr Helen Parfrey, at the Royal Papworth Hospital.
At the time there were only a few other support groups in the UK, but their value was clear. They provided a means for patients and family members to learn more about the disease, its management, and to meet with others living with the condition to gain mutual support.
With the intention that the group would be patient-led, a group of volunteers came forward to form the first committee. Early committee members included, Mike Bray as Chair, Graham Wick as Secretary, John Morgan and Fran Knights. Additional members joined the committee during the following year including Peggy Thorpe, Joe Cornish, Rod Harris, T. Sandeman-Charles and a representative of the Papworth Hospital Charity which looked after the group’s funds.
Mike Bray stood down as Chair in December 2013 to devote himself to the new national charity – Action for Pulmonary Fibrosis. He was replaced by Fran Knights, who served until late 2014, when Ron Flewett – our current Chair – took over. Graham Wick (2011-12), Elizabeth Bray (2012-13), Marilyn Jones (2013-15), Peter Burns (2015) and Steve Jones (2015-19) have served as Secretary of the group. In April 2019, Steve Jones stepped down as Secretary to focus on his new role as APF Chair, handing the reins to committee member Ron Fish.
The support group originally met four times a year at Papworth Hospital but soon membership grew to a point that the hospital room was too small. Accommodation was found at the Hub in Cambourne and the frequency of meetings increased to six times a year.
The number of members increased rapidly and by 2013 there were more than 60 patient members. Many were accompanied at meetings by their partner or a family member.
Mindful that patients across East Anglia were unable to travel to Cambourne for regular meetings it was decided to arrange a regional event. In autumn 2013 the first East Anglia Pulmonary Fibrosis Awareness Day was held at Duxford Imperial War Museum. Invitations to the event were sent to hospitals treating PF patients across East Anglia. The agenda included an update on PF treatment and research, lung transplantation, personal experiences of patients and information on the recently established charities – Action for Pulmonary Fibrosis and the Pulmonary Fibrosis Trust, as well as the British Lung Foundation’s work focusing on PF. Although the event was still largely attended by Papworth group members, patients from other hospitals also attended, so a start was made to supporting patients across the region. The event was funded by a grant obtained by Dr Parfrey and by a contribution from BLF, who used the occasion to launch their IPF Patient Charter, which was supported by APF.
In 2017, the Support Group joined with Action for Pulmonary Fibrosis to help form and support three new support groups in the region at Bedford, Chelmsford (Mid-Essex) and Bedford.
In January 2019, PHPFSG became financial independent from the Royal Papworth Hospital, while remaining closely affiliated in the delivery of patient support.