P Welcome to the first addition of the Focus group newsletter covering events taken from our first cough focus group meeting which was held at the Daisy Building, Castle Hill Hospital, on the 29th January 2013. In my humble opinion I felt the meeting was a great success. I came away from the meeting with a lot of new ideas and really enjoyed chatting with our cough patients and hearing their points of view The meeting was run by the help of Elaine McNichol-Academic Lead for Service user and Carer Involvement at University of Leeds. Thank You to Elaine for all her help in setting up this focus group, we truly appreciate it. Let’s go through what we discussed during our meeting. What you want We asked the question what brought you to our meeting. Things which were felt to be important were:- Ideas, solutions, Miracle! Improve GP awareness Keep Updated on new information Support from others in the same boat Improve exposure of issues surrounding Chronic Self Help What we want We want our patents to get involved, we understand that the patient is this expert as they live with the condition; we want to harness that expertise and get patients involved in: Design and conduct of Clinical Research The delivery of the chronic service Review questionnaires, input on whether they capture fully extent of issues associated with this condition. Chocolate may help a persistent An ingredient in Chocolate which may help people with a persistent cough. Page 2 A new Chapter to the Thalidomide story Thalidomide relieves disabling cough and improves quality of life in patients with pulmonary fibrosis. Page 3 Comments from the Group Comments from members about the first group meeting. Page 5 Future Meetings Put the in your diary details of future dates page 6 Join our blog If you have a computer at hand we like to get you talking about your cough and your experiences, fears and concerns. Be a part of our blog. To join the chat you need to go to site address sign in as and enter password Cough123. Get writing and tell us your story. Patients Voice Elaine McNichol, advertised for cough patients to give their story n how cough has affected their lives, you can listen to these stories on the following link 50% Of patients with reflux –related will have no reflux symptoms trial trial
be under diagnosed. The risk increases with age. Treatments for the symptoms include oxygen therapy and pulmonary rehabilitation, but there is no effective treatment for the constant cough, which is a hallmark of IPF. Life expectancy after diagnosis is only about three to five years. The only cure is a lung transplant. “Although the results were significant, this was a small study and we believe that a larger is warranted to confirm these promising results and also assess the drug’s impact on the disease itself,” says Horton. “We have some hope that this therapy may be able to slow the progression of IPF, but that would have to be tested in a larger study.” The study authors are: Maureen R. Horton, MD; Victoria Santopietro; Leena Mathew, BS; Karen M. Horton, MD; Albert J. Polito, MD; Mark C. Liu, MD; Sonye K. Danoff, MD and Noah Lechtzin, MD. -JHM- Note: Patients with idiopathic pulmonary fibrosis who participated in the study are willing to speak about their experience with the disease and how participation in the study affected their quality of life. “It will be good if we can get Drug Companies to become more involved – the digital stories sound a great idea. I would be happy to be involved with the stories.” “If we can learn from each other and/or professionals how to better manage our cough, it will be a big help.” “It was great to be able to meet other people in the same situation and talk about things. It was good to know we are not forgotten about and that research etc is being done and have things explained.” “Found the cough clinic session very helpful as met others with same problems. Also heard about different Potential treatments and ongoing trials would recommend anyone to come along and join in. It’s informal and friendly and will help in future with GP’s awareness, etc. Can sometimes along a partner or family member as they give support and sometimes know how hard it is to live with a ‘cougher’!” “Interesting to hear stories from other people. Found that symptoms varied greatly. Would like to meet again. Public should be made more aware of the condition ‘Reflux cough’. Travelling on the tube and the cough starts one feels like a ‘leper’ with all the dirty looks one gets.”