{"id":46740,"date":"2025-05-08T07:36:38","date_gmt":"2025-05-08T06:36:38","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=46740"},"modified":"2025-05-08T07:36:38","modified_gmt":"2025-05-08T06:36:38","slug":"securing-a-senedd-debate-on-me-the-journey-continues","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/securing-a-senedd-debate-on-me-the-journey-continues\/","title":{"rendered":"Securing a Senedd debate on ME &#8211; the journey continues"},"content":{"rendered":"<h2><strong>Proposed Senedd debate on ME<\/strong><\/h2>\n<h2><strong> highlighting the plight of severe and very severe ME<\/strong><\/h2>\n<p>&nbsp;<\/p>\n<p>The motion (or request) for a debate in the Senedd was tabled on 24th April 2025 by Adam Price MS. Unfortunately it was not succesful.\u00a0 The Senedd Business Committee chose to allocate the May 14th Member Debate slot to another motion.<\/p>\n<p><strong style=\"font-style: inherit;\">&#8216;This does not mean all hope is lost&#8217; <\/strong>says the instigator Rob Messenger!<\/p>\n<p><img data-recalc-dims=\"1\" decoding=\"async\" class=\"size-medium wp-image-46560 alignleft lazyload\" data-src=\"https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2025\/04\/Senedd-sign-Photo-by-Jonny-Gios-on-Unsplash.png?resize=300%2C225&#038;ssl=1\" alt=\"\" width=\"300\" height=\"225\" data-srcset=\"https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2025\/04\/Senedd-sign-Photo-by-Jonny-Gios-on-Unsplash.png?resize=300%2C225&amp;ssl=1 300w, https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2025\/04\/Senedd-sign-Photo-by-Jonny-Gios-on-Unsplash.png?resize=150%2C113&amp;ssl=1 150w, https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2025\/04\/Senedd-sign-Photo-by-Jonny-Gios-on-Unsplash.png?w=640&amp;ssl=1 640w\" data-sizes=\"(max-width: 300px) 100vw, 300px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 300px; --smush-placeholder-aspect-ratio: 300\/225;\" \/>&#8220;There will be other opportunities for our motion to go forward. We&#8217;re waiting to hear whether there will be a chance in June before the Senedd goes into Summer Recess between 21 July and 14 September.<\/p>\n<p><strong style=\"font-style: inherit;\">What lessons can we learn from this first attempt?\u00a0<\/strong><\/p>\n<ul>\n<li>The motion that went through had first been tabled in January. It had to wait until now to make progress. Our motion, tabled in April, might need to go on a similar journey before getting a debate slot.<\/li>\n<li>Whenever our motion comes back for consideration by the Business Committee, it&#8217;s likely to be in competition with others. So how can we give it the best chance of success?<\/li>\n<li>We need to continue to lobby our MSs, to raise their awareness and understanding of why it&#8217;s so important &#8211; tell them about our own experience of the illness and its impact on our lives, and the adequacy or otherwise of the provision we&#8217;ve received from the NHS (and\/or Social Services \/ Education) &#8211; and to persuade more of them to get behind the motion. <a href=\"https:\/\/senedd.wales\/find-a-member-of-the-senedd\/\" target=\"_blank\" rel=\"noopener\">Find out how to contact them<\/a>.\u00a0 \u00a0Template letter below<\/li>\n<\/ul>\n<blockquote>\n<h3 style=\"text-align: center;\"><strong>&#8220;Thanks to all of you who are continuing to support this effort!&#8221;<\/strong><\/h3>\n<p>&nbsp;<\/p><\/blockquote>\n<h3><strong><a href=\"https:\/\/record.senedd.wales\/Motion\/8884\" target=\"_blank\" rel=\"noopener\">The Motion<\/a><\/strong><\/h3>\n<div class=\"topBar\"><span style=\"font-size: 16px;\">To propose that the Senedd:<\/span><\/div>\n<div class=\"itemContent__content\">\n<ol>\n<li>Notes that myalgic encephalomyelitis<strong> (ME) is a chronic and disabling illness<\/strong> at all levels of severity.<\/li>\n<li>Notes that of those suffering from ME, <strong>25% are categorised by <a href=\"https:\/\/www.nice.org.uk\/guidance\/ng206\/chapter\/Recommendations\" target=\"_blank\" rel=\"noopener\">NICE<\/a> as &#8216;severe<\/strong>: mainly bed bound or housebound&#8217;, and &#8216;very severe: fully bedbound&#8217;, requiring full-time care and, in the severest cases, palliative care and tube feeding.<\/li>\n<li>Regrets that it is often those with the greatest severity levels of ME who are provided with the <strong>least amount of appropriate care and treatment.<\/strong><\/li>\n<li>Calls on the Welsh Government to<\/li>\n<\/ol>\n<p style=\"padding-left: 80px;\">a) respond to the concerns raised in the <strong>Coroner in England\u2019s Prevention of Future Deaths Report<\/strong>, and explain what practical steps they will take to ensure that no patient in Wales will ever be placed in such tragic circumstances as those described in the report;<\/p>\n<p style=\"padding-left: 80px;\">b) ensure that the <strong>Adferiad-funded ME services<\/strong> are making provision appropriate to the needs of patients with severe and very severe ME;<\/p>\n<p style=\"padding-left: 80px;\">c) bring together an expert group of health professionals and people with lived experience, at a national level, to <strong>develop all-Wales guidance<\/strong> and quality standards on ME, including for the most severely affected;<\/p>\n<p style=\"padding-left: 80px;\">d) make the appointment of an all-Wales<strong> specialist consultant<\/strong> for post-infectious chronic conditions &#8211; including\u00a0ME and long COVID &#8211; a priority;<\/p>\n<p style=\"padding-left: 80px;\">e) improve the <strong>training on ME for professionals<\/strong>, firstly in the NHS, but also in social services and schools: in particular, raising awareness of the care needs of adults and children with severe and very severe ME; and<\/p>\n<p style=\"padding-left: 80px;\">f) ensure that health boards truly <strong>co-produce<\/strong> their ME and long COVID Adferiad services, taking into account the lived experiences of those suffering at the severest levels and of those caring for them.<\/p>\n<p><a href=\"https:\/\/www.judiciary.uk\/prevention-of-future-death-reports\/maeve-boothby-oneill-prevention-of-future-deaths-report\/\">Maeve Boothby O\u2019Neill: Prevention of Future Deaths Report<\/a><\/p>\n<p><strong>Tabled By<\/strong><br \/>\nAdam Price Carmarthen East and Dinefwr<\/p>\n<p><strong>Supporters<\/strong><br \/>\nCefin Campbell, Mid and West Wales, on: 01\/05\/2025<br \/>\nHefin David, Caerphilly\u00a0on: 30\/04\/2025<br \/>\nJane Dodds, Mid and West Wales on: 28\/04\/2025<br \/>\nJoel James, South Wales Central on: 29\/04\/2025<br \/>\nLlyr Gruffydd, North Wales on: 01\/05\/2025<br \/>\nLuke Fletcher, South Wales West on: 30\/04\/2025<br \/>\nMark Isherwood, North Wales\u00a0on: 29\/04\/2025<br \/>\nMike Hedges, Swansea East on: 30\/04\/2025<br \/>\nRhys ab Owen, South Wales Central on: 02\/05\/2025<br \/>\nSioned Williams, South Wales West on: 30\/04\/2025<\/p>\n<\/div>\n<h3><strong>Template letter<\/strong><\/h3>\n<p><em>Dear (MS name)<\/em><\/p>\n<p><em>I am writing as your constituent to urge you: \u00a0<strong>Please, add your support\u00a0to Adam Price&#8217;s motion<\/strong> <strong>for a Member Debate on Severe and Very Severe ME: <\/strong><\/em><a href=\"https:\/\/record.senedd.wales\/Motion\/8884\"><strong><em>https:\/\/record.senedd.wales\/Motion\/8884<\/em><\/strong><\/a><em>\u00a0<strong>\u00a0<\/strong> \u00a0<\/em><\/p>\n<p><em>We hope the motion will be considered by the Business Committee in early June<strong>, so your indication of support is needed <u>now.<\/u><\/strong><\/em><\/p>\n<p style=\"padding-left: 40px;\"><em>(Add a brief explanation of why this is important to you personally &#8211; your own experience of ME&#8230;your experience of NHS provision for ME in Wales)<\/em><\/p>\n<p><em>\u00a0<\/em><em>I would be grateful if you could confirm whether or not you have formally added your support for Motion 8884.<\/em><\/p>\n<p><em>Thank you<\/em><\/p>\n<p><em>Yours sincerely<\/em><\/p>\n<p><em>(Your name, address and telephone number &#8211; all required)<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Proposed Senedd debate on ME highlighting the plight of severe and very severe ME &nbsp; The motion (or request) for a debate in the Senedd was tabled on 24th April 2025 by Adam Price MS. Unfortunately it was not succesful.\u00a0 &hellip; <a href=\"https:\/\/wames.org.uk\/cms-english\/securing-a-senedd-debate-on-me-the-journey-continues\/\">Continue reading <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"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,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-46740","post","type-post","status-publish","format-standard","hentry","category-news"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-c9S","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/46740","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=46740"}],"version-history":[{"count":4,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/46740\/revisions"}],"predecessor-version":[{"id":46752,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/46740\/revisions\/46752"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=46740"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=46740"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=46740"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}