Bristol Support Group
The Bristol Pulmonary Fibrosis Support Group
This group first met in March 2013 and I think we were all amazed, and delighted, at the large turnout.
It was clear from the outset that the members would very much be engaged in deciding how the group would develop – from agreeing a logo for the group to discussing possible topics for future meetings. The Group members are all at different stages of PF; some have been living with the illness for several years (one has recently had her tenth anniversary) and some much more recently. One gentleman had received his diagnosis that morning. What everyone gained from that first meeting was the feeling of not being alone; that finally there was a group specifically for PF sufferers.
Our meetings combine a mix of information and practical advice. At our first meeting Dr Adamali from the Bristol Interstitial Lung Disease (BILD) Service gave us an overview of the different conditions that come under the umbrella of pulmonary fibrosis and how BILD diagnoses and supports patients. Heather Lamb, the group organiser came armed to the second meeting with some well-researched travel information and Marilyn Crump, from the British Lung Foundation, brought BLF Travel Packs. The meeting was rounded off with updates on Pirfenidone and details of the launch of Pulmonary Fibrosis UK.
Jo Reed a specialist respiratory therapist gave a talk on managing breathlessness at our third meeting followed by a session of relaxation techniques with Shanti. It was good to be shown simple ways to clear our minds and keep the world at bay for a short while. At out next meeting Professor Millar, who heads the BILD Service (and is Chair of BALR) stretched the old grey matter speaking about latest research developments in PF. In October, representatives from Air Liquide lead a very useful session on home oxygen. It gave members a welcome opportunity to ask questions about the day to day problems of living with oxygen.
Past talks have included:
- Lung Function – where we learned about the tests we all undergo
- Living with PF from the Head of the Psychology unit-an update on latest research into PF
- Help for carers – a talk by Age UK
- An update on research into PF and treatments by our resident pharmacist
- Action for Pulmonary Fibrosis- information about how the charities is working to support patients
Our meetings are attended by various members of the Respiratory Team at Southmead Hospital who come along to help and give advice and support. The ability to get to know staff outside of the usual hospital environment makes visits to clinic far less stressful. This has been particularly useful during the move to our amazing new Brunel Building – a state of the art brand new hospital for Bristol.