Christmas celebrations 2015

The group had a great Christmas lunch at The Gradon, in Crynant. They open up the downstairs room to make it easier for those of us who don't do stairs.

Food was delicious and plentiful

Unfortunately I couldn't be there as I was in Singleton Hospital in Swansea. Wow, what a place to be ! I had a bed by the window with a view to die for, Mumbles Head round to Port Talbot. To wake up and see that each morning was a real tonic. The staff were angels with the patience of saints and the food was really good, hot, tasty and well presented. What more can you ask for ?

I am back home now, my family will do Christmas while I sit with my feet up and let it all happen around me.

I hope all who read my blog have a great Christmas, wherever you may be.

Exciting research and BIG money

      What a great meeting we had this month. There were over fifty people there, visitors from Breathe Easy Newport, Swansea, Carmarthen, and Haverfordwest. Penny Woods and Joseph Carter from British Lung Foundation, Claire Hurlin and others all came to hear about the work being done by Haemair, a company based at Swansea University.

      Before the meeting started, Penny talked briefly about the enlightened approach to health care which the Welsh government has. We are innovative in our approach here, both in research, development and in data collecting, so we have an excellent information base on which to base our health care and even rethink approaches to make improvements. Who said that Offas Dyke is the dividing wall of death between England and Wales ? I think we all know who said it ! Well, I feel sorry for all of you to the east of our wall, in England. Here in Wales, things are not perfect, but we have a much more informed and less restricted approach to health care, which can be readily tailor made to suit the area, rural or urban.

      We were delighted to be able to present Penny with a cheque for £4,250, raised at this year's abseil events, and other fund raising days. This will be used in research projects supported by BLF.

     Then came the main event. Bill Johns, Phil Hales and Ron Knight gave us a presentation, explaining the thrilling work they are doing at Haemair. They are working on an artificial lung, to be used in hospitals to get people back on their feet and ambulatory once more. Also it will be used to help patients waiting for a lung transplant, and the ultimate aim is to miniaturise it even further so it can be implanted - the equivalent of a pacemaker for the lungs.
     We first met Bill, Phil and Ron in 2009. They had started their company in 2005. In those first years they had established that the device works and they had developed the fine tubing necessary to replicate the surface area of the lungs, This is no thicker than a human hair. Now, six years later they are planning to go into production in 2017. Of course there are many hurdles to jump and we wish them every success and all the help and recognition they need. Some of their team, the younger generation, from Swansea University came along too. 

     Patients who are awaiting surgery or lung transplant, or have suffered respiratory failure due to bird flu, swine flu etc, are currently treated with ECMO. As you can see this is a bulky machine on a trolley, needing four members of staff to monitor and operate. Because the blood leaves the body it needs a heat exchanger to stop it losing heat as it travels through the device.

    





 The Haemair device is much smaller and will sit on the chest (I have tried one, not yet quite reduced to it's eventuual size) and it will be comfortable to wear. Patients who have been confined to bed will be able to walk around, improve muscle tone, increase fitness, improve their sense of wellbeing, and so prepare themselves for surgery, or give their lungs time to recover from nasty infections. 

This is the device at it's present stage of development. We have seen it working and it is so exciting to see into the future.


 The website can tell you more accurately than I can about their work. All I can say is that fifty members of South Wales Breathe Easy groups left the meeting feeling excited and full of hope. www.haemair.com/haemair.htm

Care and Repair

What a great service Care and Repair is, helping people stay in their own homes, feeling safe, warm and comfortable. Small jobs, such as grab rails, handrails on steps etc. can be free of charge for those receiving benefits, but usually there is a fair charge for the work. If you need work done in or around your home, please contact your local Care and Repair. This is for home owners, they can't send workers to Council or Housing Association houses. In those cases you would need to contact your landlord.

What I think is great that we can go to Care and Repair to find local workman and be sure that their work and work ethics have been checked out. It can be so risky these days finding someone to do a simple job unless a friend or neighbour can recommend someone. 

After Carol had told us all about the service offered in the Neath area, here in South Wales, our new lead nurse for our COPD team called in for a chat and to introduce herself to us. Some of us remember Denise from a few years ago, when she briefly worked in Neath, the she went to Cardiff. Well now she is back in Neath and it was great to have a general chat with her, for us all to get to know a bit about each other, rather than just patient and nurse stuff.

Getting Involved

      Some years ago, back in 2007, I applied to take part in the NICE guideline review for COPD. Much to my surprise I was accepted and then began two and a half years of visits to London. It was all rather difficult to begin with, lots of medical terms and acronyms which I had difficulty understanding. I was working with Kath Leach, from British Lung Foundation, and she felt just as bemused as I was. 

      This was early days of patient involvement so Kath and I had a word with the chair of the GDG (Guideline Development Group) and from then onwards efforts were made to ensure that we both understood. It was the same as with any group of professionals, they use their own jargon. It was a very interesting and, in the end, an enjoyable experience. We often stayed in the accommodation block in the RCP (Royal College of Physicians). We met lots of interesting people and at the same time did valuable work in putting forward the patients point of view. When the work was finished we were given use of the lecture theatre at the RCP to present our work to health professionals, the press and politicians. I was asked to give a short presentation on what it is like to live with COPD and how important it is for patients to be involved when decisions are being made about their care. That was nerve wracking until I got going.

      After that I was asked a few times to go to London and Manchester to help train other volunteers to do this work. The main message I was able to give to them was that they would be working with a group of experts in their own field and that they would be an expert in being a patient. Only we can truly know what it is like to live with a medical condition. I am also working on giving the message to the medical profession that they need to understand that we don't understand the language they speak - all those medical terms and acronyms can be very daunting. Every time I ask for an explanation in "normal speak" I am given one. I was once referred to as "The Voice of Common Sense," and in many ways I think that is one of the main purposes of patient involvement. I was told of a pharmaceutical company who developed a pill to replace an inhaled therapy that patients were finding difficult to use. Only later did they realise that this group of patients also had difficulty swallowing. If a patient had been involved at the beginning of that bit of research, a lot of time and money would have been saved.

      More recently I have worked with Involving People here in Wales, and have become the patient rep on the PACE programme in Cardiff. This is a piece of research looking at whether antibiotics are being overused in the treatment of exacerbations in COPD. The theory being that a lot of our lung infections are caused by a virus and so antibiotics would be useless. In such cases treatment should be steroids only. With worldwide concern that antibiotics are losing their effectiveness against bacteria, this is important work. If we could use them less, they would be more effective when needed against a bacterial infection. This is a GP led study and my role has been to make sure that the set up will be convenient and comfortable for the patients taking part. I have advised that COPD patients be approached about taking part while they are well and not to wait until they come into surgery with an exacerbation. When we feel ill we can't think straight and don't want to mess about filling in forms and signing agreements. I have also advised on the wording of letters, keeping out all the complicated medical terms and making them easy to understand at all levels. We want no one to be excluded because of lack of understanding.

       Then, out of the blue, I got a call a few weeks ago from NICE in Manchester, to ask me to take part in a conference/workshop related to the Salford Lung Study, a GP based study of COPD which is taking place in Salford. I agreed and was then informed the conference was in Frankfurt. I thought I had misheard and was told - yes the one in Germany. It was all very last minute but a very nice lady at the University of Utrecht booked my flights and hotel and arranged for me to take my mobility scooter. Airport assistance was arranged as well. She did arrange oxygen for the flight, but Lufthansa wanted to charge £100 each way so I opted to use my own portable concentrator. When we got to the hotel they said I would need space for me scooter, so we were upgraded to an executive suite - lovely. We had a super room overlooking the Frankfurt skyline. Then we got down to the nitty gritty of the workshop - lots of doctor speak but also a willingness to listen to my point of view, that it is no use planning trials or treatment routines unless the patients are able to comply, follow plain instructions and feel safe while doing so. When we volunteer for these trials we must feel that our welfare is high on their agenda. If all these safeguards are in pace then the drop out rate should be reduced, and that is important to those conducting a trial. Also trials run from GP surgeries help patients feel secure because they are working with a doctor and nurses they know and who know them.

      My next piece of involvement is next Tuesday when I will be at the Wales Millennium Centre in Cardiff, at a presentation and workshop for PRIME (Wales Centre for Primary and Emergency Care Research). I have been asked to take part in the workshop and to speak a little about patient involvement.

      I do feel this is important work and would love more people to become involved. When I was in Frankfurt I asked "Why me ?" and was told because I am not afraid to speak out. Well, I was at first, but if you think you could do this work, don't think you need medical knowledge, because you don't. You are an expert in whatever condition you are living with, and nobody knows more about that than you do. Our input is vital if care and drug delivery is to be as effective as possible. 

      I need to add that should you feel you would like to do this work, you will not be left out of pocket, all expenses are covered and if you need a carer with you, as i do for long journeys, that is covered too. Also, all travel and overnight stays are taken care of by the organisers, so no worries there either. If you don't want to travel, there will be plenty of opportunities to get involved close to home too. So, go for it !

     

Can you inhale properly ?

Well, who would've thought it ? Inhalers can be fun !!

Andrea Robinson brought a large bag of tricks, in the form of a huge variety of inhalers. Some need a long slow breath and the others need a quick, strong, deep breath, We all think we are using this medication properly, but how many of us really are ?


We used a machine which showed how efficient our techniques are. I found out that I am not inhaling my dry powder Seretide and Spiriva correctly. The medicine is not getting down into my lungs. The test showed that my breathing isn't strong enough due to the severity of my COPD. - note to self - have a chat with my doctor about a change of prescription. It seems after all these years (10 in all) that I have not been getting the right amount of drug into my lungs. Is it any wonder there is confusion when you look at all the different inhalers on offer. These here are just a few of them.

This all sounds very serious, which it is of course, but Andrea made it into a fun session. There were so many devices to try out, and get the giggles over.

She did show us a device - an Incheck DIAL - which every surgery should have. It's a simple and cheap (about £25 I think) device which quickly indicates which type of inhaler is suitable for each patient by testing their sucking power.

 It's amazing how many people are prescribed these inhalers with little or no instruction of how to use them - hence the true story of the man who was given an inhaler for his bad chest. Sometime later his nurse asked him if it was helping. "No" came the reply "I spray it on my chest and rub it in, but it doesn't do any good" What an incredible waste of an expensive medicine, and how sad for the person who didn't get the help he needed.

Just how safe are we ?

In fact we are very safe here in Neath Post Talbot and South Powys. however we do need to be vigilant against doorstep, internet, post and telephone scams. These people who approach us in our homes are a real nuisance, if not criminal. How annoying it is to struggle to the phone, when short of breath because of a lung condition, only to find a dead phone line or someone trying to sell you something you don't want, or some crook trying to get your bank details for the sole purpose of robbing you.

The general rule is don't give out any details to anyone who has called you. If you have called them asking for a service that is different. Always look for the padlock on any internet site you are using - as in the sample below.

Then you will know that the site is to be trusted.

Fit a chain to your external doors then you are in control if any unwanted or unknown callers come to your door. They are few and far between but better safe than sorry.

Sian Morris talked about all the usual things, which we should all be doing, such as hide your purse when out shopping, don't put cards or wallet in your back pocket, NEVER keep pin numbers and debit/credit cards together - if you can't remember your pin, write it on your hand, no one can steal that.

There are thieves about but most people are honest. Don't worry, just take care and stay safe !

How to breathe and how not to breathe !

Rhiannon Kendrick gave us an interesting talk on different ways to control breathing. We all know how ghastly it feels when you have a lung condition and you get breathless. I know I feel out of control and it can be frightening.
the British Lung Foundation information leaflet explains it much better than I can, so check the link below and www.blf.org.uk to see all the other information there is free to download, or to be sent to your home.

Dealing with breathlessness

Don't forget the BLF Helpline - 03000 030 555

Volunteer Award 2015

On Monday evening, surely one of the wettest and windiest evenings of the year, we were very proud to receive a Volunteer Award for our Breathe Easy group. It was given for the all round work we do in supporting people with lung conditions and their carers, for raising awareness at various locations and events in the area, Also campaigning work and fundraising.

 

 

The award was presented by Gwenda Thomas AM

 

It really was worth turning out on such a foul night

Amazing result !

At last all the sponsor money is gathered in for our abseil and this year we have raised a wonderful

£4,007

 

 

 

 

This is the 9th year we have held our abseil and in that time we have raised £44,337. When we first started I would never have thought that was achievable.

It has all been made possible by the fantastic support we have had from all the people who have taken part and those who dug deep into their pockets to donate.

None of this would have been possible without the support of Call of the Wild, who run the event free of charge every year. Call of the Wild.

 

We need first aiders on standby (never necessary thank goodness) and that has been provided by Dulais Valley Ambulance Service (now retired) and the local St John's group www.stjohnwales.co.uk/ - again, no charge to us.

 

Also our friend Bob Grainger comes along each year to photograph our abseilers and provide them with a key ring or fridge magnet and he donates to our fund www.bobgraingerphotography.com/

 

Natural Resources Wales have also waived their fee to help us raise more money for our charity naturalresources.wales/

 

Without this support, year after year, we would never have achieved so much, so, thank you to all of you.







A visit to the National Botanic Gardens of Wales

Recently we were were lucky to be awarded a grant under the Carers Small Grant Scheme. We used this yesterday to take our members and their carers (husbands and wives) to visit the National Botanic gardens in Lanarthne.
We all had a lovely time. The Mediterranean plants in the wonderful dome, designed by Norman Foster, are always a delight. It is well laid out with plants from all parts of the world which enjoy a Mediterranean climate.
From there we went down to the restaurant for lunch and then outside to see the display by the Pembokeshire Birds of Prey. There was a Merlin, an Eagle Owl, a Vulture, a Red Kite and many more, all flying and showing off their agility or speed.




An Eagle Owl waits on its perch before the show begins

Lynne was thrilled to be able to get so close to the Eagle Owl

 



Without our mobility scooters we would never have managed to cover the gardens properly





The azaleas were a blaze of colour.
 

These gardens are well worth a visit at any time of the year. We had our own mobility scooters but they do have scooters abd wheelchairs to hire for half a day or a full day. Also there is a land train to take you up to the glass domed building at the top of the site. Then it is downhill all the way down to the restaurant, through the gardens and back to the car park.


Swansea in the 60s

Phil Treseder returned to give us one of his interesting illustrated talks about Swansea in the 60s. What a shame that most of our members who were there, couldn't make it on the day. So Phil was talking to outsiders. But it was interesting for us non locals to see how Swansea used to be and compare it to what we know today and to compare it to where we all lived in the 60s. They do say if you remember the 60s you weren't there, but this was about bricks and mortar, rebuilding and city centre planning after all the damage caused by World War II.

 

Before

 

Bomb damage was extensive, but as in all other cities in UK, it gave the chance to replan and rebuild.

 



 







After

Swansea is now a vibrant modern city, constantly changing to meet the needs of its people.

 

 

 

A year of concerns

Last year staffing concerns caused us a few worries. Our physiotherapist left , quickly followed by our oxygen nurse. Soon after that another nurse was absent on long term sickness then, just before Christmas, another nurse was on compassionate leave. What had been a busy team of five was reduced to just one. Respiratory nursing is so specialised, they can't fill these gaps easily. Back-up was pulled in from around the locality, with various people filling the gaps to keep the service going. Our respiratory team has run a good program of home care, pulmonary rehab, hospital clinics etc. over many years, and has continued to do so over the last few months by carefully prioritising needs and careful management of available staff.
Chris Burrows our lead respiratory nurse, and Fiona Reynolds, Head of Nursing in ABMUHB (Abertawe Bro Morganwg University Health Board) came to our Breathe Easy meeting on Friday, to talk through all these issues with us. We had all been worried that we couldn't see how only one or two people could do the work of five with widely differing skills. Happily now a new physiotherapist has begun work, someone has taken over oxygen assessment and another nurse has returned to her post, so things are not quite so frantic.
Let's hope for a calmer year ahead.

Our 9th abseil event - 2015

We couldn't have asked for a better day. After the recent wet, cold and windy weather, we woke up to warm sunshine on Sunday morning. Here are two of our stewards getting ready to help people get their abseiling kit on, man the car park, calm nerves and do other duties that stewards do.

Twenty four adults and three children took part. Half of them have already collected their sponsor money, totalling £2,570 so far - what will the final figure be ? Who knows, only time will tell.

 

Here, a team of family and friends are kitted up and ready to go. Are they viewing the rock with anticipation or anxiety - a bit of both I suppose.

The three children all have big grins, so they found it good fun on the day.

 

Over the years we have raised just over £40,000 for British Lung Foundation to help them in their vital work in combatting lung disease and the causes of lung disease.

 

 

Here we have a group of fundraisers ready for their big adventure.

 Dave, the expert from call of the Wild, gives the first group their pep talk, before climbing to the top, ready for the descent. It's quicker going down than climbing up.

 
Becks from Call of the Wild works with the children.  They all had a great time and came down the rock with big smiles on their faces.

Call of the Wild have supported us free of charge for nine years now. St John's Ambulance and Natural Resources Wales both waived their fee to support our fundraising and Bob Grainger took photographs for keyrings and fridge magnets and he has made a donation - also he lets me use his pictures on this blog and the BLF website. These two pictures of the children are his. Thanks to all these people for their support.



 

If you would like to donate to help us raise money for research into lung disease and to help fund other necessary work, go to  https://www.justgiving.com/BE-Neath-abseil to find our justgiving page.


Fire Safety

Our fireman gave us some really useful tips on fire safety and showed us a video which showed just how alarmingly rapidly a fire can spread.

He had an easily remembered message if confronted by a fire - The Three Outs

1. Never try to put it OUT.
2. Get OUT.
3. Call the fire service OUT.

Then we talked about the many things we can do to help prevent fires in our own homes. These are all quite simple things we can all do

• Don't leave appliances on, just running, when you don't need to. Switch off when not in use, to prevent overheating.
• Test fire alarms regularly, at least once a week.
• If you don't have fire alarms, call the fire service near you and they will come and fit them free of charge.
• When you go to bed at night close all internal doors. This slows down the speed the fire will spread should one happen during the night.
• Always have a planned escape route.
• Keep the keys in, or very close to the external door. A key could be very difficult to locate, or easily dropped and lost in a smoke filled room.
• If you have an electric blanket, take it along to a local health and wellbeing roadshow, and the fire service will check it and replace it free of charge, if it is faulty. If you don't know of one happening near you, call your local fire service and they will advise you where to go, or maybe arrange a home safety check for you.

And remember, these are simple things to do, just common sense really, and house fires are pretty rare - MAKE SURE IT DOESN'T HAPPEN TO YOU !!!

Then we touched on safety of fire near oxygen - the message is it's not safe.

• Dever use oxygen while smoking
• Don't let others smoke near you when using oxygen
• Don't use oxygen near an open flame such as a gas cooker, gas fire or open fire.

Fundraising Abseil

It's that time of year again, when we launch our annual fundraiser - Abseil at Dinas Rock !

Every year about thirty people abseil , have a great experience, raise sponsor money for British Lung Foundation to use to back research projects into various aspects of lung health, prevention, cures, better care - the list goes on.

Over the years we have raised just over £40,000 for this great cause. call of the Wild, St John's Ambulance and Natural Resources Wales have all waived their fees, so thanks to their generosity we can raise more money for this research. If you would like to support us, just hit the link below to donate on justgiving.

thank you

https://www.justgiving.com/BE-Neath-abseil

 

Inhalers and a holistic approach

Ali Sparkes and Maria, from the Medicine Centre in Neath, talked at length about lung health both the traditional and a more holistic approach.
Ali spoke mostly about all the different inhalers available and the different jobs they do, whether they are short acting or long acting. Also she made sure we all knew how to inhale the medications properly - as we all know, different ways foe different inhalers.
Maria's interest is in Chinese medicine. She brought along various seeds for us to try which could supplement our diets.
We learned that all dairy foods (milk, yoghurt, chocolate etc) are bad for mucus, whilepumpkin seeds, sesame seeds, quinoa, black kale and pot barley are so full of nutrients, we only need sprinkle a little into our food, especially when appetite is poor due to general ill health.
If you don't have a health food shop close by, most of these things are avialable now in your local supermarkets. So, why not give it a go and give yourself a boost ?

Meeting the new man

This is my first entry for 2015.

A very Happy New Year to all our readers.

 

 

We were very pleased to be able to meet and welcome our new head of BLF Wales, Joseph Carter. We had a nice long chat over coffee and biscuits, about his plans and ideas and we brought him up to date with all the things we have been doing and campaigns we have become involved in.