SWANSEA AND AREA SUPPORT GROUP FOR PULMONARY FIBROSIS

AUTUMN NEWSLETTER OCTOBER 2015

Welcome

Hello members and welcome to our Autumn Newsletter. In SeptemberI welcomed 3 new members Oswyn,Brian and Phil. A warm welcome and do come again.

Attendances

We again had a great turn out for our September meeting with barely enough chairs and once again a wonderful array of cakes served up by Cheryl and her colleagues. Once again thank you for those members who also brought in cakes or raffle prizes.It is very much appreciated. I think of joining Weightwatchers after each meeting as I ‘waddle’out full of delicious cakes !

September Speaker

Sue Davies spoke to us in a very wisely, about Respiratory Physiotherapy and in particular, about how to manage our breathing and how to avoid and/or control anxiety whilst exerting yourself.Keen on vigorous ironing? Don’t do it if it means you are worn out for the day. Keeping clean is compulsory, but ironing is not!) . Do jobs in small doses .Walk to the shops in sections not in one go! Relax using a pillow as a cushion for your arms when getting anxious re breathing. It is all about realising none of us are 21 and we must not set ourselves unreasonable expectations. I hope you found Sue’s talk helpful and as informative as I did.

I should mention that Sue and the support team thought that on reflection, it would be difficult to meaningfully talk to the wider group about coughing techniques , as Pulmonary Fibrosis normally involves a dry’hacking’ cough. It would be better if members with more ‘chesty’ coughs speak with the support staff direct at future meetings for any tips. Some of us who suffer from the a ‘chesty’ cough tend to suck a menthol cough sweet which helps drainage but have a word with the team at a future meeting for suggestions.

Co-ordinating Committee

I have added committeetelephone numbers if you really feel that you need to talk to someone in a low moment but bear in mind we are not medical people:

David Rees (Patient and Chair) 01792 920527

Mary Warren (Carer) 01792896001

Fred Elgie (Patient) 01639 689095

Jill Brown (Carer and Secretary) 01639 845779

Charitable Support

I am in the laborious process of setting up a bank account to lodge our raffle money and donations. We on the committee are really bowled over by the generous way in which everyone who attends makes a contribution from baking to raffle prizes to cash donations.

Last month the receipts were as follows:

Raffle £ 52.60p raffle plus a whopping £127.00 in donations. Marvellous stuff and thank you one and all.

Topics for future meetings

We have sent out a list of topics. All ideas welcome please!

October Speaker

This will be advised by Cheryl when she sends out her monthly announcement.

IPF World Awareness Week commencing 5th October

“IPF World Week “commenced on 5 October and at our last meeting you will have noticed your ‘glamorous‘gang of 4 on your committee sporting Action for Pulmonary Fibrosis Tee Shirts.! Saga models look out! Cheryl also took some group photographs which Cheryl will try and get published via the press office in the local paper to promote the week in a modest way.

Some of you also took a supply of leaflets given to us by Action for Pulmonary Fibrosis to give to GP’s, libraries’ shops or anywhere that members can place them. We all know that there is a need 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.

Dr Harrison has,of course, been a key note speaker at a media launch in the Welsh Assembly with the British Lung Foundation promoting IPF World Week. If he is able to make our October meeting perhaps he can update us on the occasion.

APF Survey on IPF 2016

This has been launched nationally. I sent a copy to my GP’s and it has been passed on to the doctors for a bit of bedtime reading. Don’t worry Dr Harrison has also been sent a copy as well!

It is a long report and if anyone wants an e-mail copy let me know and I shall send it to them. It does relate to findings in England but Wales does strive to match the English system standards and NHS Wales should match English standards.

The background to the survey:-

In January 2015, the National Institute for Health and Care Excellence (NICE) published a Quality Standard setting out how IPF care should be managed in England. In July, APF launched its ‘Your IPF’ survey to test whether the Quality Standard was being translated into action. Through the survey responses, new evidence has been gathered on the experiences of 312 patients across the UK, providing a glimpse of the care being received by many who have already been diagnosed. This report is based on the 256 responses from England, in addition to information collected from 18 hospital trusts in England currently providing IPF care. All quotes are taken verbatim from responses to the survey.

The findings suggest that: -

• Patients who receive care in line with the Quality Standard feel supported are more active and have a better quality of life

• Challenges to implementing the Quality Standard persist, and some patients feel they have to cope with this devastating disease alone

• Delivery of good care across England is inconsistent; more must still be done by the NHS to disseminate best practice to all regions

Karen Hughes Trustee at APF will hopefully be at our November meeting and can expand.

Dates for next meeting in 2015

As usual the last Monday in the month

26 October 3pm

30 November 3pm

Christmas break

2016

25 January 3pm

DAVID REES

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