Unfortunately it is so.
For this one I had concern only for the people who had their privacy taken.
Overall though this project has taken a toll on pwME, including many here most especially Trish, just the trial. Not finished yet.
But I mostly fear the consequences if this kit goes ahead and is launched. If it is used in NHS services it continues the harm of burden upon patients instead of on the professional where it belongs.
I would not consent to complete this.
To refuse is to risk a label of non compliance. I do not wish to be compliant.
But such a stand may be impossible in many cases because medical and therapy teams do not appreciate non compliance.
A new patient dependent on the system may have to fill this out and lose privacy and precious energy in order to get a good write up from the clinic, so as to get help supportive letters or medication care in the near future.
The continued attitude from Tyson to not just dismissing that feedback on long surveys and the accessibility/exclusion/harm individually to severe but also that it’s limiting validity is beyond inappropriate
this is teaching those who will use it that severe people are just whingers attitude- as long as it isn’t being tackled even by the MEA - instead of a fair safety assessment issue
I find Tyson unsafe and unable to care enough about safety/harm on this, acknowledge it, or take responsibility or even feedback that relates to injury she might cause and how it limits and skews what she is claiming to be doing to something else (because you've a filtered population who can reply).
This is very serious stuff I’m talking about. She won’t get it. Why won’t MEA? It doesn’t matter if you are harming people by GET by conversion course CFst-CBT or this combo (if it 1. gets forced on people, 2. is misinformation in itself impacting culture by saying 'severe people can fill all this in and any claims to the contrary are to be dismissed) , sadly this neglect of safety concerns being taken seriously has happened so consistently I'm concluding that she can’t be doing this. We just end up with another way to harm us that has been carefully hidden.
I find it astounding safety concerns aren’t the number one thing that get your fired and censured in some way from being near vulnerable patients. As a lay person these protections seem basic assumptions you would have a from a service using words like 'health'.
when that person just bombastically as if it's their choice whether it matters, rather than saying 'it's an issue we are taking seriously' at those flagging it they should be ashamed and in many areas I'm used to it even if they rectified it someone doing it might be worried it would be the last thing they did in their career, because of the impact on their reputation and trust etc - the moment they boo booed and everyone thought what the heck we can’t have them near those patients, look at that. So I'm as astounded as it keeps going on just being fobbed off.
I’m just astounded by the reply instead. And it’s meant she’s carried on and is even more deluded to whether it is serious or not, and emboldened because no one has required she reins her attitude in and stops choosing to be uneducated
ie she refuses to care or acknowledge,
because those who hold the reins over her aren't taking it seriously, so she must be under the impression they agree? or that it's OK?
That attitude can’t be anywhere near healthcare even at the bottom when it’s someone with close oversight by a manager. Not choosing who is or isn’t represented and harmed in all the stats.
it’s exactly the mind issues we need to be removing from the sector. You don’t cherry pick and tie arms beyond back and censor unless people are saying what you want then shout and use manipulative tricks to limit who can input then claim ‘it speaks for them’ and impose it on them.
Her response must feel beyond unkind when this is gently flagged and I’m shocked her regulator doesn’t tell her off. She reckons it’s fine to potentially lumber the severe with filling out all this and puts her fingers in her ears to the impossible ness of that and how much harm it is? And there’s no point to it either
it’s like having someone being allowed to ignore a yellow card flag as long as you can find some who are milder can say it's fine.
But more to the point you can't have someone who is publicly replying this way to feedback. It's a form of silencing in itself.
