Thread by @Turner12341

“Health and well-being are a top priority for us”

Will you keep this promise to your staff when you’re failing patients?

2007 guidelines STILL recommend GET

New guidelines inexplicably paused

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk

https://twitter.com/nicecomms/status/1441432242182443021

“we understand the importance of creating a respectful, supportive, and transparent environment for all our employees.”

It’s curious you don’t understand the same for the ME/CFS community.

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk

“Health and well-being are a top priority for us because we understand the importance of creating a respectful, supportive, and transparent environment.”

H is left out of your acronym 😑

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk

“we understand the importance of…a…transparent environment”

If you understand that then why the lack of it in your communications with people suffering from and processes concerning ME/CFS?

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk

“Here at NICE we are…proud of the work we do”.

There are at least 250,000 people who I’d bet wouldn’t agree with that statement in light of the decisions you’ve made since 17 September.

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk

“The Media relations team is responsible for promoting the work of NICE and protecting the organisation’s reputation.”

Ship’s sailed there I’m afraid.

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk

“the team provides support and manages issues that are of interest to journalists, communicating clearly on a range of often complex and sensitive issues”

*Crickets chirp*

*Tumbleweed rolls by*

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk

For £32,306 - £39,027 pa you’d expect good communication from the post holder. There’s been none of that concerning the ME/CFS guidelines since 17 September.

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk

Promises:

- New guidelines on 18 August

- Transparency

- Independent Chair for the roundtable

Hoping for improved comms once the next Media Relations Executive is in post.

#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk