A hot afternoon

We were sorry not to see Tina Evans last week, and learn from her digital training session. We all have something to learn about new ways of communicating with each other and officialdom. However, sadly it was not to be. Tina had a stinking cold so we decided it best to postpone the session until September. We are going to look for another venue with WIFI, then we will get much more out of the session.
We had a lovely meeting though, welcoming two new members and Helen, our physiotherapist paid us a visit. she is off to New Zealand soon, lucky her, but she leaves a void which causes concern as the pulmonary rehab program can't continue without a physiotherapist. Our local health board, ABMU - Abertawe Bro Morgannwg University Health Board - won't be advertising her post until she has actually gone. So there is bound to be a delay before we get a new person in post and trained to do the rehab program. Such a shame as pulmonary rehab is so beneficial for all people living with COPD. We really don't need unnecessary delays in getting the program up and running again.

Breathe Easy Week 16th to 20th June 2014

Our theme for Breathe Easy Week this year is Breathlessness, and what to do about it. Should we ignore it - of course not. Will it clear up and go away - no, it needs to be dealt with.

Bethan Jenkins AM, Plaid Cymru, called in to see how we were getting on and she has pledged to help us make sure that our local health board follows the respiratory plan launched last month in the Senedd in Cardiff.


So, the message is this

• do you get out of breath going uphill ?
• are you breathless while getting dressed ?
• does having a wash and cleaning your teeth make you breathless ?
• what about washing, drying and styling your hair, can you manage to do that without getting breathless ?

If you answer yes to any of these, you need to see your doctor to get your lungs checked out.

Peter Black AM, Lib Dem, was interested to see the exercise room which is used for pulmonary rehab, and to hear that our physiotherapist is leaving us very soon and that her post won't be advertised until she has left, causing a delay into getting a new person into post and trained ready to run pulmonary rehab. All this causes us concern as it will mean longer waits for people who have been referred to actually get a place. We all know what a valuable tool the rehab course is in our fight against the debilitating effects of lung disease.

Breathe Easy Week was a great success for us. Lots of information was taken away. We have two new members for our Breathe Easy group and the support of two members of the Welsh Assembly.

 

Thank you to all who came along and stopped to browse or talk to us. It was a pleasure to meet you all.

A Fun day in Ystradgynlais

It was such a shame that it was such a wet and miserable day today, but it didn't stop us enjoying ourselves and sharing a laugh over a pink pig. Many people turned out in the wet to watch the belly dancers and listen to the Ystradgynlais Silver Band play.

In spite of the dismal weather we still managed to sell quite a few dolls and raised £45.00 for Breathe Easy Neath Valley. Our MP, Roger Williams came to see how the event was doing and chat to stall holders, while enjoying a cuppa and some lovely home made cake - I know it's good, my neighbour makes them and she is an excellent cook.

Scams and Tricksters

Gerry Keighley, from Age Cymru, had a lot of good advice on how to deal with scams and tricksters (thieves) who use the internet, phones, postal services and doorstep calling to try and fool us into parting with our money.
The message is, no matter how enticing or honest the offer seems, have nothing to do with it. Just delete all emails and NEVER open an attachment from someone you don't know. Put the phone down on unwanted phone calls without speaking to the caller, recycle all unsolicited mail and tell doorstep callers to go away. The taxman, banks, electricity and gas companies will never ask you for bank details, such as account numbers or pin numbers, over the phone, by post or by email. So, if that happens, it's a scam.
Gerry is trying to establish Cold Calling Free Zones in Wales where communities have official signs saying that cold callers are not welcome. This works and deters all but the most audacious.
Just remember, if you want your drive paved, new double glazing, a walk in shower, or anything else, always find the supplier yourself. that way you will keep yourself safe from these criminals who are trying to part you from your money.

KEEP SAFE !!

Lung Health Going Forward in Wales

            On Tuesday, 29th April, three of our group went to meet Assembly Members and listen to Mark Drakeford, the Minister for Health in Wales. He was announcing the plan for the future of healthcare for all respiratory patients accross Wales.

           British Lung Foundation, and all of us in Breathe Easy and will do all we can to see this being a success. We will campaign, raise awareness and support patients and their families and friends through Breathe Easy.

          Over the coming months we will be keeping in touch with our Assembly Members and Health Professionals to support them in implementing these proposals.

           these are the things that have been proposed and which we want to see happening accross Wales.

·         Smoking rates driven down to 16% by 2020. Introducing standardised packaging for tobacco products, and legislation to ban smoking in cars carrying children will be key policies to achieving this

·         People who smoke accessing a smoking cessation service that works with them and for them, at a time, place, and format that optimises their chances of successfully quitting

·         Much more raising awareness and encouraging people to get their lung health checked

·         Tools for self-management such as pulmonary rehabilitation programmes should be much more accessible, delivered locally, and reach many more people, to help them achieve a better quality of life and keep out of hospital

·         Referrals into Breathe Easy support groups  becoming an essential part of the patient pathway

Our annual abseil

We held our annual abseil event on Sunday. It was a bit chilly but at least the rain held off until the last ten minutes. We had twenty five adults and nine children doing the abseil and all had a lovely, if somewhat scary time.

Here we all are posing for a press photo. Lots of jittery laughter as the first group prepare to climb to the top of Dinas rock.



 

Does my bum look big in this ?

The children watch as the first one goes over the top.

The only way is down.

Our local MP, Roger Williams, has abseiled with us for four years now. This is just the sort of support we need - thanks Roger and to everyone else who took part and all those who came to help and support.

We have already collected £2,300 in donations, with plenty more still to come in, so, once more, a great event.

Oxygen extends life

For those who need it, oxygen extends life. This was the message Alison Channing, the oxygen nurse from Baywater Healthcare brought us on Friday. The trouble is that many people think that breathlessness and low oxygen levels are the same thing - THEY ARE NOT ! That is a difficult concept to get your head around even for those of us who use oxygen regularly. They often go together but they are not the same thing.

It was nice to meet Alison and get to know her. She will come back later in the year and show us some of the equipment on offer for oxygen users and to tell us about plans for the future. The technology in this field is moving so fast, there is always something new. We have yet to be offered a lightweight method of delivering oxygen, so come on all you clever inventors out there. We want an oxygen container or a portable concentrator which is so lightweight it doesn't cause shoulder pain when carried for a long time.