{"id":43451,"date":"2018-11-16T09:53:18","date_gmt":"2018-11-16T08:53:18","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=43451"},"modified":"2018-11-21T10:04:38","modified_gmt":"2018-11-21T09:04:38","slug":"jules-horton-capturing-lost-voices-by-listening-to-patients-solutions","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2018\/11\/16\/jules-horton-capturing-lost-voices-by-listening-to-patients-solutions\/","title":{"rendered":"Jules Horton: Capturing lost voices by listening to patient\u2019s solutions"},"content":{"rendered":"<p class=\"standfirst\">Most agree that it is vitally important to find patient-led solutions for NHS problems. But how many sources of patient feedback are routinely overlooked or discarded?<\/p>\n<p><!--more--><br \/>\n<span style=\"font-weight: 400\"><a href=\"https:\/\/blogs.bmj.com\/bmj\/files\/2018\/11\/jules_horton.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-thumbnail wp-image-43452\" src=\"https:\/\/blogs.bmj.com\/bmj\/files\/2018\/11\/jules_horton-150x150.jpg\" alt=\"\" width=\"150\" height=\"150\" \/><\/a>In 2012, while coping with the effects of post-cancer depression, along with a number of other health conditions, I reluctantly went on an education programme for patients (EPP) in chronic disease self-management in Pontypool, Torfaen. I had no expectations from this course as I already felt I was an \u201cexpert\u201d in keeping myself alive and I was also a full-time carer.<\/span><\/p>\n<p><span style=\"font-weight: 400\">What I found when I started the course was that I was not alone. Every other person in the room (including the tutors) was also managing long term health conditions like me. The support that everyone gave to each other was incredible. We shared our experiences, and although we were dealing with different conditions, the similarity of our experiences was striking.<\/span><\/p>\n<p><span style=\"font-weight: 400\">We took part in problem solving exercises that helped participants to start to work out problems for themselves and also helped others by giving them the opportunity to share their ideas on these common problems. This produced a wide range of solutions, generated by people like me about issues that we and many others routinely faced. It was a really valuable exercise, generating lots of useful insights about our experiences of health and care and potential solutions to problems that we experienced in the NHS. These responses were discarded at the end of the sessions and it occurred to me\u2014wouldn\u2019t someone be interested in learning from this?<\/span><\/p>\n<p><span style=\"font-weight: 400\">It seemed a waste of valuable information and I was determined to make sure that this information could be seen and heard by people able to do something about it. So often it seems that the NHS is under attack by the media, but in these reports the voice of the people actually using the system isn\u2019t heard.<\/span><\/p>\n<p><span style=\"font-weight: 400\">Soon I was employed as a coordinator for EPP. This then led to me applying to become a Bevan Advocate<\/span><span style=\"font-weight: 400\">\u2014<\/span><span style=\"font-weight: 400\">members of the public who help to inform the think tank with their lived experiences of healthcare. With the support of the Bevan Commission, Public Health Wales, Gavo, and Swansea University, I have brought together the experiences of over 750 EPP participants in Wales, totalling 1,400 responses overall in a new report.<\/span><\/p>\n<p><span style=\"font-weight: 400\">The report <\/span><a href=\"http:\/\/www.bevancommission.org\/en\/publications?id=50\"><i><span style=\"font-weight: 400\">Patient driven solutions to common problems<\/span><\/i><\/a><span style=\"font-weight: 400\">, sets out some of the most commonly reported issues, and more importantly, the practical solutions identified by people who use the system as patients and carers. <\/span><\/p>\n<p><span style=\"font-weight: 400\">Many of the solutions put forward by patients are not resource-heavy or difficult to implement\u2014for example, improving communication between frontline staff and patients simply means getting rid of the jargon and managing patient expectations better. Others are more complex, but could make a huge difference in patient experiences and ensuring that we feel like equal partners in our care. For example, many patients would love to have access to their own medical notes and records so that they can prepare themselves before their appointments. This shift to electronic health records has been widely discussed. By allowing patients to become custodians of their own health data, it could make a huge difference in ensuring an equilibrium of responsibility between people and health professionals. <\/span><\/p>\n<p><span style=\"font-weight: 400\">It is my belief that the NHS cannot continue to just keep fixing people, but that it must help people to help themselves and each other and it also must listen to people about what is important to them. The health system needs the solutions and views of its patients if it is to improve its services to suit people\u2019s needs. No source of patient feedback should be overlooked\u2014instead they should be cherished as a untapped goldmine that could transform the way that the NHS works for the better. I hope our mission to highlight patient\u2019s solutions in Wales inspires others around the UK to look afresh at the way that they collect and analyse patient feedback. Our voices are too valuable to lose!<\/span><\/p>\n<p><em><span style=\"font-weight: 400\"><strong>Jules Horton<\/strong> is a Bevan Advocate and EPP Co-ordinator for Caerphilly, Torfaen &amp; Newport.<\/span><\/em><\/p>\n<p><em><strong>Competing interests<\/strong>: None declared<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Most agree that it is vitally important to find patient-led solutions for NHS problems. But how many sources of patient feedback are routinely overlooked or discarded? [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2018\/11\/16\/jules-horton-capturing-lost-voices-by-listening-to-patients-solutions\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":39201,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5749],"tags":[],"class_list":["post-43451","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-perspectives"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Jules Horton: Capturing lost voices by listening to patient\u2019s solutions - The BMJ<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/bmj\/2018\/11\/16\/jules-horton-capturing-lost-voices-by-listening-to-patients-solutions\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Jules Horton: Capturing lost voices by listening to patient\u2019s solutions - The BMJ\" \/>\n<meta property=\"og:description\" content=\"Most agree that it is vitally important to find patient-led solutions for NHS problems. 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