Inaugural Meeting 3rd February 2015 Newsletter
Well, what a day! Fantastic seeing such a great turn out and our thanks to Wendy Dickinson and Action for Pulmonary Fibrosis for the support in bringing this to fruition
We had a fabulous venue and food (great brownies!) kindly sponsored by NFFC but will be moving to our new venue – Edwalton Golf Club for subsequent meetings
The day kicked off with Mike Bray sharing his experience of having IPF and his lung transplant.
Prof Simon Johnson then discussed what IPF is and how it affects the body and after lunch Dr Gisli Jenkins told us how far we had come with the treatment of IPF and explained the various trials ongoing as we seek better treatment or hopefully a cure
As a group we discussed briefly the semantics of the term ‘Palliative care’ and perhaps we needed to be looking more at ‘best supportive care’ for IPF patients. When a cure is not available we need to be looking at quality of life and managing symptoms. This was further reinforced by Sister Jane Newton (Fleming ward) who told us about her plans for 4 palliative (best supported care?) rooms on her ward which would be for our patients use only. APF has kindly sponsored us to get these rooms re decorated and up and running
Suggestions for room names were requested, quite a mixed bunch to be honest. Not sure if the ‘Wallace and Grommit’ room would be acceptable but it certainly made me laugh!
We had a great response to requests for suggestions for topics for the future. Our next meeting is as follows:
Tuesday 14th April. 12 noon until 2 – 2.30pm
Venue: Edwalton Golf Club, Wellin Lane, Edwalton, Nottingham NG12 4AS
(Please see map/directions) Tel 0115 9234775
Tea and coffees in the room but the bar open and bar snacks/meals available for lunch
A talk at 1pm, this times topic is: ‘Exercising with breathlessness’ by a senior physiotherapist. Also, as suggested a ‘good giggle’ will be on the agenda!
So, please come and join us. Looking forward to seeing you there
Julie and the IPF team
Please RSVP by 9th April to
07976 190186