Newsletter - February 2016

	Breathe Easy Neath Valley David Jones (Chairman)      Lynn Maddock (Treasurer) Margaret Barnard (Secretary) 01639 700140 1 Gwar Y Llyn Onllwyn Road Coelbren Neath SA10 9NS dandm.barnard@virgin.net http://breatheeasyneathvalley.blogspot.com/

 

Tuesday, 09 February 2016

 Dear All

We will be celebrating our tenth birthday at our next meeting on 19^th February. Instead of having a speaker we are all going to share our experiences of living with lung disease and the ways we have found to overcome problems. So, all of you have a big think, and make notes, of some things to bring to the meeting. I am sure we can all learn a lot from each other. This is for carers too, as you too are affected by the consequences of lung disease – it’s a life changing experience for all of us.

It’s time to start advertising the abseil again this year. I will bring some posters and application forms along to the next meeting and I am sure you will all help to display them in shops, pubs and clubs in the area. We always have such a good turnout each year and I am sure we will have the same success this year as well. So far we have raised £44,350 – it would be great if we could reach £50,000 in our tenth year as it is our tenth abseil too. For those of you receiving this by email, I have attached a poster. I would be most grateful if you could display this in your workplace, local shop, or another place where it will be seen by many. Thank you !

I hope you are all managing to survive in this awful weather – Doug is down the garden right now salvaging what he can from a garden shed and the greenhouse, one blown over in the wind and the other with a load of broken glass.  What a mess ! But our daffodils are out early, which always make us smile. They are such cheerful flowers, promising warmer weather to come.

Best wishes

Margaret

One person in five in Wales is affected by a lung disease. We are here for every one of them. Mae clefyd yr ysgyfaint yn effeithio ar un o bob pump o bobl yng Nghymru. Rydym ni yma ar gyfer pob un ohonyn nhw. BLF Wales, One Caspian Point, Pierhead Street, Cardiff Bay, Cardiff, CF10 4DQ, T  03000 030 555 (x 1701)   M 07900 400325 www.blf.org.uk/regions/wales e: wales@blf.org.uk  web: www.blf.org.uk/  helpline: 03000 030 555 Registered Office 73 - 75 Goswell Road, London, EC1V 7ER. t: 020 7688 5555 f: 020 7688 5556 e: enquiries@blf.org.uk   www.blf.org.uk/ A company limited by guarantee. Registered charity no. 326730  VAT number  648 8121 18

 

Baywater Health and oxygen provision

This is the first post of 2016, so Happy New Year to all my readers and thank you for following the story of our Breathe Easy group.

Yesterday Allison Channing, from Baywater Healthcare, came to talk to us about oxygen and the various ways it can be delivered. This link will tell you in more detail about oxygen therapy - www.baywater.co.uk/patient-carer/our-therapies/oxygen

Allison brought one of the new cylinders which has a flat bottom - much laughter ensued over the benefits of flat or rounded bottoms, but those of you who use oxygen cylinders know how infuriating it has been that they don't stand when we put them down to rest. 


 
 The Inogen One on the right, is lightweight, portable, in so much as it can be carried, and is recharged from mains electricity or your car battery.

The Sequel Eclipse is much heavier, needs to be pulled or pushed on wheels. It can be used overnight for those needing that level of use. Both of these machines give you greater freedom, especially when travelling. All you need is your machine, a charging lead and, should you choose to buy one, a spare battery, to give you more time away from home. I have recharged mine in restaurants while out for a meal and on the train while travelling from South Wales to London.

Some of our group had never seen some of these before and it had certainly given them food for thought. Allison's message to us was, talk it through with your oxygen nurse and see what will best suit your needs, and the Baywater Healthcare will provide that for you.

 

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.