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 !