Christmas Celebration

Once again, a great time was had by all. It was lovely to be able to welcome members of Breathe Easy Swansea Bay and Carmarthen to our annual bash as well as Chris Mulholland and Matthew Collins from British Lung Foundation. The ladies from Briton Ferry Health and Wellbeing Group joined us for some fun chair exercises.

First of all the "professionals" showed us how to do it properly - then we had a go and managed to tie our arms and legs in knots.

 

 No matter how many times the team leader demonstrated, arms and legs went off in the wrong directions.

Now what are we supposed to do - stress balls are being handed out. This seems to be a recipe for tangled thumbs and fingers.

Yes !! I was right, it was.

 

 

It was an opportunity for us all to be able to say goodbye to Chris, as she is leaving British Lung Foundation to move on to pastures new, so it was great to be able to present her with a cheque for £4,261.00, which is the sum Breathe Easy Neath raised this year for BLF. Then we gave Chris a more modest leaving gift in appreciation of all her hard work on behalf of people living with lung conditions here in Wales, and for her frienship over the years. We are also sorry to be losing Matthew early in the New Year. He is moving to the midlands to work. It's all change in the Welsh BLF office in Swansea.

Ystradgynlais Christmas Fair

Once again the Miner's Welfare was host to the Ysradgynlais Christmas Fair. We took along our dolls and other novelties and joined the other stall holders in a very pleasant day. A slow start soon became a bustle and we made £75 for our Breathe Easy group.

 It certainly reminded me that Christmas is just around the corner and I need to get my skates on if I am to get myself organised this year.

EPP - Expert Patients Program

Lawrence Thomas, and his wife Sandra, very kindly came to visit us on Friday. Lawrence spoke about his very positive experiences with EPP and how he has gone on to become a tutor. It was very interesting to hear how the program helps people to gain control of their chronic condition and learn how to live with it. People with COPD (Chronic Obstructive Pulmonary Disease) have joined an EPP course depressed, scared to try walking or going out, and they finish the course changed people. It gives them confidence to manage symptoms, pace themselves. Often they make new friends, isolation can become a thing of the past.

What's not to like about it ? We are concerned about chronic lung conditions such as COPD, but all people with a chronic condition should enrol on one of these courses and change their lives, maybe become a tutor themselves. All you need to do is ask your GP or respiratory nurse about your nearest course and enrol. It's a seven week course and just three hours a week. You will cover breathing exercises, life management, relaxation, sleep, medication and understanding and dealing with depression and anxiety. You will be supported by qualified medical professionals and your patient tutor - after all, who knows better how you feel than someone who is living with the same condition ?

Thank you Lawrence and Sandra for taking the time to share your experiences with us.

Garden Birds with Amanda Skull

Amanda visited our group four years ago, so it was nice to be able to welcome her back to hear more news on the fluctuations of bird populations over the years. We have lots of house sparrows in our garden using the nest boxes two or three times a year to raise broods. Four years ago it was bluetits using these same boxes. Ten years ago our bird table was mobbed by starlings, now we hardly ever see one.
if you woulds like to know more about the BTO (British Trust for Ornitholigy)
contact www.bto.org/gbw
email gbw@bto.org
Twitter @BTO_GBW

Getting involved

Tina Evans, from Disability Wales organised an afternoon in the Resource Centre in Baglan. We had the use of the big meeting room to learn more about the internet and how it can be useful, a source of pleasure, information, fun and communication. It made a nice change to meet in a place other than our usual location.
The Welsh Government is funding people like Tina to meet groups of disabled and older people to make sure that all those who want to be connect find it easy to do so. This is important as more and more things such as banking, benefits, social housing etc are managed on the internet now.
It certainly beats waiting around in busy banks and offices. I do a lot of shopping online now and it certainly saves whole afternoons of searching for items "not in stock" at smaller branches.

Carisbrooke Castle

Tales of power, defence, treachery, design and captivity, Phil Bowen told the tale well, with illustrations.

Castles are a wonderful legacy and show us how we have evolved as a nation over the years. The original castle was a Norman motte and bailey but later additions provided comfortable living quarters.

The first glass was used in this castle so that the ladies could sit near the windows in the colder weather, to do their sewing and embroidery, without feeling the cold winds.

Charles I was help prisoner here before his execution. Two of his children were kept with him and his daughter Elizabeth died in the castle.

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. 

Powys Silver Kite Award

 



Doug and I were very proud today to be invited to tea at the Abercrave Inn, with the Chairman of Powys County Council, Colonel John Brunt OBE TD, Elizabeth Protheroe, our local Councillor, David Thomas, the Head of British Lung Foundation Wales, Chris Mulholland and our neighbours Merle and David. This was so that we could be presented with our Silver Kite Awards for our work for British Lung Foundation Wales, campaigning and raising awareness of lung conditions. Over the years we have both enjoyed turning the negative experience of living with lung disease into something positive.

 

 

Welfare and Benefit Reforms

We had an interesting talk from Debbie White about the changes to Disability Benefits and how they will affect members of our group. Most of us are over the age of 65 so, thankfully, there will be no change for us. Everything we have now will remain in place. For those under 65 reviews will take place but there is such a backlog now that it will be 2017 or even later than that.

Since we had our meeting we have seen in the press that ATOS have had their contract terminated, which seems to be a good thing after all the awful stories we were hearing about decisions they were making and the ways in which those decisions were reached. Let's hope the new people have more empathy with the people they are working with. There are scroungers claiming disability benefits, who need to be caught and punished, but the majority of claimants are genuine, and this must be recognised.

Abseil 2014

It's that time of year again - we are getting ready for our 8th abseil event. Over the years we have raised just over £36,500 - it never ceases to amaze me.

PLEASE, PLEASE support us either by donating through Justgiving

or contact me for an application form and take part yourself. Go on, you know you want to.



The Mumbles Railway

Phil Treseder, from Swansea Museum, came to share a bit of Swansea's history with us today and what a wonderful story lies behind the Mumbles Railway ! It started life as a horse drawn carriages which ran on  rail tracks.

It wasn't a cheap day out either. Only the better off could afford this lovely ride around the edge of Swansea bay

 After the horses came steam and the use of a variety of carriages - it looks like whatever they had they hitched on.

Now we got varying ticket prices. Those who could afford it rode in the enclosed carriage and the less affluent could sit on top.

After the steam trains came electrification and the trams. Apparently these are still called a railway, rather than a tramway, because the cars were linked together.

Two really nice things happened today at the meeting. Firstly we welcomed a new member, which is always good news. Secondly, an enthusiast had seen the talk advertised and came to ask if he could join us just for the day, and of course we made him welcome.
thank you Phil for an interesting talk about a Swansea landmark.

NPT Carers

Alison and Eryl, from Neath Port Talbot Carers, came to tell us about all the support they can give to carers. There are so many ways from a helpline, 01639 642277, to respite care so that the carer can have a day off, and advice on how to access financial help.
This is a vital service to support the many people in the community who take on caring roles, often without realising that support and services are out there for them.
If you want to know more you can email information@nptcarers.org.uk
On February 20th we will have an information stand in The Centre, Lodge Drive, Baglan, Port Talbot, SA12 8UB. If you care for someone with a lung condition, pop in and see what help and support we can offer you.