Dr Hng + Friends @DoctorwithME
Author of "Doctor with M.E." Founder of Doctors with M.E. (DwME), international professional association. Views our own (me + friends) not DwME. me-pedia.org/wiki/Robin_Bro… England, United Kingdom Joined July 2017-
Tweets1K
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RIGHTS AND OBLIGATIONS IN ME/CFS Making expected standards clear - it has been done before. See the SEND Code of Practice, which is also relevant to children with #MECFS and #LongCovid #LongCovidKids. assets.publishing.service.gov.uk/government/upl…
Dr Hng + Friends retweeted
“We propose a simple solution which explicitly removes the perception of optionality in meeting basic standards in the care and service of ME/#CFS patients. It takes the form of official guidance called ‘Rights and Obligations in ME/CFS’” #MEcfs #PwME #MyalgicEncephalomyelitis
Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards doctorswith.me/rights-and-obl…
Dr Hng + Friends retweeted
#ME patient rights 👇 “A patient complains of life-changing, severe fatigue along with multiple perplexing symptoms. Her doctor does not believe in ME so diagnoses her with anxiety / Functional Neurological Disorder / other without investigation”
Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards doctorswith.me/rights-and-obl…
@quasar9uk @DoctorsWithME Sorry fixed now. ME brain. 🫤
#pwME: If you want health and social services to know what their obligations are towards you, be sure to mention @DoctorsWithME's guidance on RIGHTS AND OBLIGATIONS IN #MECFS when the ME/CFS Delivery Plan in the UK is open for wider engagement. #LongCovid doctorswith.me/rights-and-obl…
@Troevs @DoctorsWithME Some time in the next few weeks or months I think. A chance for other parties (e.g. patient charities) to input into the process.
@Troevs @DoctorsWithME DHSC is drawing up a draft ME/CFS delivery plan, and plan wider engagement so more parties can input later. If you like the sound of our proposed guidance, just say you want rights and obligations in ME/CFS to be made explicit, or link to our page on this.
@DoctorsWithME proposes official guidance on Rights and Obligations in ME/CFS for the UK. #MECFS #LongCovidKids #LongCovid doctorswith.me/rights-and-obl…
@shellchat @SurreWerre @DoctorsWithME @DHSCgovuk Do our best. 😊
Announcing: @DoctorsWithME has joined @DHSCgovuk Attitudes and Education working group, part of their ME/CFS Delivery Plan. Also taking part in their workshops on healthcare, social care, welfare, children & young people. Working hard for #MECFS #LongCovid.
@Naylor007 @DoctorsWithME @DHSCgovuk Doing our best. 🙂
@kayemclaren @DoctorsWithME @DHSCgovuk Thank you. We will do our best to get patients what they deserve. 🙂 #MECFS #LongCovid #LongCovidKids
@quasar9uk @DoctorsWithME @DHSCgovuk Noted.
@thegodofpleasur Very difficult for sick and penniless patients. That's why we are pushing for @DHSCgovuk to make these obligations and consequences explicit. Get the whole system to understand the legal risks not patients to fight individual cases for basic rights. #Compliance #MECFS #LongCovid
1/ #Compliance approach in #MECFS. What does this mean? Make explicit Rights, Obligations, Consequences (risks+liabilities). Map to relevant laws and policies. Easy for managers to understand what they must provide. Patients can point to rights. @DHSCgovuk
@VanessaFuchsArt Exactly. And we are trying to get @DHSCgovuk to lay it all out so people can't just make it up anymore. Rules DO apply. Obligations = duties. Practitioners = doctors and other people who are supposed to care for the patients. #MECFS #LongCovid
@lmrlmrlmr @DoctorsWithME @DHSCgovuk You're welcome. 😊
@PhillippaHolla1 @DoctorsWithME @DHSCgovuk Aw I'm glad to hear that! 😊
Tom Kindlon @TomKindlon
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