SWANSEA AND AREA SUPPORT GROUP FOR PULMONARY FIBROSIS
SUMMER NEWSLETTER SEPTEMBER 2015
Welcome
Hello members and welcome to our mini Summer Newsletter which is being sent out to our support group members. Well, summer came and went very quickly didn’t it?! Can you believe that our group met for the first time on 15th June, only 3 months ago? Since then we have met each month at our excellent premises at Penual Baptist church. We owe a debt of thanks to Glyndwr Prideaux, Secretary at the church and his committee for their kindness in allowing us this facility. I am sure you will agree that at Christmas a donation to the church would be appropriate.
Good attendances
We have enjoyed very good attendances to our meetings with a range of patients, carers and medical staff. I am sure that all patients and carers are very grateful to the support of the medical team under Dr Kim Harrison and as managed by specialist nurse Cheryl Owen. From the start we have been totally spoilt by some sumptuous afternoon cakes brought in by Cheryl and her workmates and complemented by contributions from the group members. Who needs Mary Berry I say!
New Co-ordinating Committee
We have already set up a small co-ordinating committee as follows:
David Rees (Patient and Chair)
Mary Warren (Carer)
Fred Elgie (Patient)
Jill Brown (Carer and Secretary)
At our next meeting we plan to circulate our names, e-mail and telephone numbers for members in the event someone needs to talk about anything of relevance or just talk! We are not medical people but someone outside your immediate circle of support to talk with can help now and then with hopefully an independent view for you - let’s see how that goes.
Name and Constitution of our group
We have agreed the name of our group as The Swansea and Area Support Group for Pulmonary Fibrosis, which can cover our friends in Llanelli and nearby. We have also prepared a simple one page Constitution for the group to enable us to work under some basic rules so we all know where we stand and also to enable us to open a bank account to receive income including grants as well as incur appropriate expenses as part of the need for us to be self sustainable.
Charitable Support
Our friends at Action for Pulmonary Fibrosis have generously offered a grant of £300 which we are all very grateful to receive. On that score I must thank Karen Hughes a Trustee at that charity for her help in setting us up together with the medical team at Morriston.
We have already raised some funds from donations by members at our meetings for the refreshments and for the raffle. At present I hold £91.20p from donations and the raffle held at the last meeting which will be paid into the bank in due course.
Topics for future meetings
The co-ordinating committee has met to discuss matters and some possible topics for future discussion (accepting that Cheryl and the team cannot work miracles on whom they can identify to come along to our meetings).
Ideas include:-
-Managing breathlessness.
-Chest clearance techniques.
-Yoga/Pilates/exercise therapies.
-Pulmonary rehabilitation and exercise maintenance.
-Using Oxygen. When is it needed? Equipment plus oxygen for getting around including holidays.
-Anxiety and Panic attacks re breathing.
-Palliative care and what it means.
-Disablement driving badges and IPF/Disability benefits.
-Weight loss and gain in the context of having IPF ie diet issues.
-New treatments e.g. Pirfenidone and Nindotab.
-Support in the community and who can help?
-IPF awareness events PLUS more light hearted Social events!!!
October Meeting
Speaker –Sue Davies
At our next meeting Sue Davies, the specialist Respiratory physiotherapist, by popular request, will be talking about chest clearance problems and how to relieve the ‘need to cough’ symptoms.
“IPF World Week “ commences 5 October and we hope to produce with Cheryl’s help a press release and photo or two for the Swansea press publicising our existence, cause and to promote global interest in our medical condition which remains largely unknown to the public - let’s do our little bit to educate them locally.
On that score it was great to hear that Dr Harrison is to be a key note speaker at a media launch in the Welsh Assembly with the British Lung Foundation promoting IPF World Week. His passion in educating people about Pulmonary Fibrosis in general is fantastic and long may it continue.
Dates for next meeting in 2015
As usual the last Monday in the month
28 September 3pm
26 October 3pm
30 November 3pm
Christmas break
2016
25 January 3pm
DAVID REES
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