{"id":44401,"date":"2024-08-08T10:32:11","date_gmt":"2024-08-08T09:32:11","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=44401"},"modified":"2024-08-08T14:39:27","modified_gmt":"2024-08-08T13:39:27","slug":"wames-calls-for-safe-hospital-care-for-severe-me-in-wales","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/wames-calls-for-safe-hospital-care-for-severe-me-in-wales\/","title":{"rendered":"WAMES calls for safe hospital care for severe ME in Wales"},"content":{"rendered":"

#SevereMEday 2024<\/strong><\/h2>\n

WAMES calls for safe hospital care for severe ME in Wales<\/strong><\/h3>\n

 <\/p>\n

On #SevereMEday,\u00a0 8 August 2024, WAMES is asking the NHS in Wales to ensure they can treat patients with ME, and particularly those with severe ME, appropriately and safely.<\/p>\n

To highlight what this means, WAMES is sending the NHS and hospitals a\u00a0 copy of the WMEA Best practice guidelines<\/strong><\/a>, which can be used in conjuction with the NICE guidelines<\/strong> section 1.17<\/strong>:\u00a0Care for people with severe or very severe ME\/CFS<\/a><\/p>\n

Best practice includes:\u00a0<\/strong><\/h3>\n
    \n
  1. LISTEN to ME<\/strong>: people with ME, carers and specialists<\/li>\n
  2. EDUCATE HEALTHCARE STAFF:<\/strong> about ME and discredited\u00a0 treatments.<\/li>\n
  3. ALLOW ADVOCATES:<\/strong> to stay and speak for patients\u00a0 to speak on their behalf.<\/li>\n
  4. \"\"SAFEGUARD REST: <\/strong>and eliminate all non-essential interaction around the patient.<\/li>\n
  5. ENSURE A LOW-STIMULUS ENVIRONMENT:<\/strong> Minimise sound, light, temperature, chemical or fragrance smells, sensory overload and physical contact.<\/li>\n
  6. SUPPORT NUTRITIONAL CARE:<\/strong> Allow special diet foods, flexible meal times and adjusted feeding positions. Initiate IV hydration, oral nutrition support, enteral tube feeding or parenteral nutrition where appropriate.<\/li>\n
  7. ENABLE MEDICATION MANAGEMENT:<\/strong> To avoid adverse reactions to drugs start medications one at a time and taper up slowly from a fraction of normal dose.<\/li>\n
  8. \"\"RESPECT REASONABLE ADJUSTMENTS<\/strong>: dark glasses, headphones or earplugs\/ ear defenders, eye-masks, flat beds etc.<\/li>\n
  9. PRIORITISE COMMUNICATION:<\/strong>\u00a0 If patients can tolerate conversation, speak slowly and quietly; provide additional time for them to process information.<\/li>\n
  10. BELIEVE ME<\/strong>: Severe ME has a\u00a0much lower quality of life<\/a> than cancer, stroke, MS and chronic renal failure. Patients should be treated with respect, their physiological disease recognised, and their symptoms addressed.<\/li>\n<\/ol>\n

    Download the full document:<\/strong><\/h3>\n

    Safer hospital care for Severe ME: information for health providers<\/a><\/p>\n

    See also<\/strong>: Hospital mistreatment of Severe ME patients globally #SevereMEday<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

    #SevereMEday 2024 WAMES calls for safe hospital care for severe ME in Wales   On #SevereMEday,\u00a0 8 August 2024, WAMES is asking the NHS in Wales to ensure they can treat patients with ME, and particularly those with severe ME, … Continue reading →<\/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-44401","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-by9","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/44401","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=44401"}],"version-history":[{"count":8,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/44401\/revisions"}],"predecessor-version":[{"id":44420,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/44401\/revisions\/44420"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=44401"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=44401"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=44401"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}