Most of my involvement over the last year as a member of the UK Renal Registry Patients\u2019 Council has been with Think Kidneys. When I started I found a very different pace to previous experience. I received 20-30 emails a day and I didn\u2019t understand most of them, or how to respond. It was like being thrown into a fast flowing river or coming in half way through a foreign language film! I got the sense of the workstream discussions quite quickly, but any contributions are from my professional management background not as a patient.<\/p>\n
There can be a real communication problem here for patients. No lay person entering a specialist discussion likes to stand up and ask questions that show they don\u2019t understand what\u2019s going on; the safe course is to keep quiet, after all the meeting is there to get business done not to act as a training session for you. The risk is that patients may not have the confidence to make put forward their views, especially in the more technical workstreams and that could render their attendance as being of little value. Induction and glossaries help, but the more that can be done to assist the process of getting up to speed the less risk there is that the patient voice will be lost.<\/p>\n
The thing that has made the most difference for me was a recent Think Kidneys team meeting. It gave me a good overview and I began to understand both the project and how my workstream fitted into it. I felt part of the team through the group discussions, which were more informal than workstream business meetings. It made me more aware of the achievements and sheer enthusiasm and professionalism of the enterprise, all managed in a very informal, friendly way. I\u2019m proud to be part of a group like that. I suggest events like these should be mandatory for all patient reps \u2013 you get such a huge payoff for the time spent, and the opportunity to present a clear and informed patient voice.<\/p>\n
In summary? Well, looking back over the last year there is one overwhelming impression – of welcome, patience and a genuine desire to enable patients\u2019 perspectives. But please NHS, fewer acronyms and abbreviations!<\/p>\n
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Most of my involvement over the last year as a member of the UK Renal Registry Patients\u2019 Council has been with Think Kidneys. When I started I found a very different pace to previous experience. I received 20-30 emails a day and I didn\u2019t understand most of them, or how to respond. It was like being thrown into a fast flowing river or coming in half…<\/p>\n","protected":false},"author":58,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_bbp_topic_count":0,"_bbp_reply_count":0,"_bbp_total_topic_count":0,"_bbp_total_reply_count":0,"_bbp_voice_count":0,"_bbp_anonymous_reply_count":0,"_bbp_topic_count_hidden":0,"_bbp_reply_count_hidden":0,"_bbp_forum_subforum_count":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-1525","post","type-post","status-publish","format-standard","hentry","category-blog"],"acf":[],"yoast_head":"\n