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