Papworth Hospital Pulmonary Fibrosis Support Group

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The Papworth Hospital Pulmonary Fibrosis Support Group

The group provides support and education to people with pulmonary fibrosis and their families.

We encourage the sharing of experiences of people in East Anglia living with pulmonary fibrosis and other similar lung diseases.

The group was established in 2010 by the Papworth specialist nurse Emma Harris and interstitial lung disease consultant, Dr Helen Parfrey with a small group of patients. It originally met 4 times a year at Papworth Hospital.  It has become so popular that it now meets six times a year at The Hub, High Street in Cambourne, Cambridgeshire. It also organises additional meetings, including an IPF Awareness Day, when doctors present latest research findings. Generally, 60-70 people attend the meetings.

The Group is now organised through a committee of members supported by Papworth staff. Meetings usually include a presentation on a topic of interest often led by a medical specialist.  Some more light-hearted activities, such as a picture quiz may be included and a short information session ensures that members are up-to-date with national events and developments related to pulmonary fibrosis.  Occasional social events are also arranged.  In the summer it will be organising an annual picnic at Hinchingbrooke Country Park, Huntingdon and cruises for members on the River Ouse in the Ladybird River Boat.

We always ensure there is sufficient time for informal chat between members of our group. This part of the meeting is highly valued as it allows members to share experiences and provide mutual support.

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