Dr Hng on this Twitter thread gives her explanation in defense of the 45 minute video and the use of language. She is referring people to her Twitter thread if they question the over-complicated language:
1/ Of all the things we have produced what people find hardest to understand are the ones dealing with medico-legal and compliance issues. This is because people are not used to the language.
2/ However doctors & orgs do interact with the law. Doctors receive lectures dealing with those aspects that are relevant to them. This includes topics such as consent, assault, euthanasia, medical negligence, indemnity, medical records, data protection, the list goes on.
3/ We also discuss ethics, the role of religious beliefs, end of life care, clinical guidelines, communications (inc social media), diagnostic coding, whistle blowing, etc – which maybe isn’t primarily about law but refers to it where relevant and the law still applies.
4/ When legal topics are being delivered in a lecture the language is explained by the lecturer and there is no problem understanding it. Our 45 min video on rule breaking in the context of
#MECFS is akin to this. 45 min is a perfectly normal length of time for a lecture.
5/ What’s perhaps missing is the face-to-face interaction, where ordinarily the meanings of words will be clarified, ideas elaborated. Such as “regulatory capture”, or “glass ceiling”. We will have to deal with these (perhaps by providing a glossary – pls bear with us).
6/ Nevertheless, the video is made available for all to whom it is relevant, which includes any health care professionals looking after
#MECFS patients, their employers, healthcare providers, their indemnity providers, and even
@DHSCgovuk
itself.
7/ Issues of particular relevance in
#MECFS = equality, consent, medical negligence.
#BolithoGloss principle and
#RegulatoryCapture should be mainstream.
8/ As well as education for health practitioners / providers, this video proposes an ACTION PLAN to
@DHSCgovuk
to ensure success of its new ME/CFS Delivery Plan. At speed + at scale. All involved at all layers of healthcare shld be made to understand the principles in the video.
9/ One line summary: Education + hoping behavioural change will follow is not enough. Enforceable standards and removal of optionality is req’d due to widespread
#InstitutionalisedDiscrimination, ignorance and
#RegulatoryCapture in
#MECFS.
10/ Actually these legal principles and practice standards are already not optional but they are mostly unknown or ignored in
#MECFS. They are already enforceable through legal action as the scientific consensus is clear.
11/ So for scaled and timely success they must be embedded in every decision by the
@DHSCgovuk
ME/CFS Delivery Plan component groups, and cascaded all the way down to the frontline worker. All layers of the system must also be educated on these principles, risks and obligations.
12 seems to be missing.
13/ Success is not hard to achieve.
@DoctorsWithME
offers our expertise and stands ready to lead the way.
https://doctorswith.me/