United Kingdom: NHS East Kent Hospitals University - CFS/ME

Thank you for posting @Wyva. Seems like a very positive response back & quickly too.

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The reply from EAST KENT HOSPITALS UNIVERSITY NHS FOUNDATION TRUST)

Thank you very much for alerting us to this error. You are quite right to have raised your concerns. The leaflet has been immediately taken off the website and the incident is being raised on Datix ( our clinical incident management system) and investigated.

As well as taking the leaflet off the website the immediate actions will be to:

Identify if this leaflet was given out to any of our known patients – if so the families will be contacted as a matter of urgency and informed of the error, a harm review carried out and clinical information updated for the patient.
The above action will also be taken for any child or young person where clinical advice has been based on any of the harmful advice within the leaflet.
Unfortunately, we are unable to identify if anyone has accessed the leaflet independently of a clinician signposting them.

The above has started and all staff who are in work will be spoken to by end of today – 2 of our 3 localities have already been approached and staff have confirmed the leaflet has not been used and were not aware that the leaflet was in circulation. All staff so far have confirmed they are working to the current guidelines which reflect the current NICE guidelines.

Once again thank you for raising this issue and our sincere apologies that this incident has occurred.

Karen Costelloe
Operations Director
Child Health Care Group

 

Wow. I mean we shouldn't be shocked at someone doing the right thing properly and taking it seriously, but it has been so bad for so long by so many

 

Enforcement is 99% of any system of rules. At this point, direct questions need to be asked about why rules are not being enforced, and what it says about every other rule if there is arbitrary enforcement.

We know this is on purpose since they literally came out saying they would do exactly this. The medical associations were frothing at the mouth, screaming they would not comply. This is intentional and any claim otherwise is an insult to our intelligence when they literally came out and said and did it.

 

Keep the same people in, they do all this and then at best claim a 'compromise' AGAIN so at best you end up with BACME doing what they want. A load of money wasted on physios delivering motivating CBT about very little with no medical care - so basically ending up filling the clinic places they need to with 'fatigue' patients again?

Makes you realise who is really running the show and what 'the show' really is for them. And all the other professionals well it's a union about their pay and hours and conditions and this bunch are undermining all of that just for the right to offer harm to patients and ignore science.

I'm curious what are they going to do if people who do this started being sacked for making it clear they will frustrate nevermind follow new guidance - for seemingly no reason (when it is a new job there is no incumbent to be hard done by) - get everyone in the NHS to go on strike? What are their sticks they are going to use if they don't get their way?

One thing I think there should be no compromise on is requiring independent (from all of these) follow-up with any patient who goes through any clinic in the country.
So that the truth of each can be monitored, along with whether their claims of 'from their experience it works' etc. Plus any 'incidents' can be logged safely without fear of it affecting their access to anything etc.

This reply looks good though, but there's the sad thing too - currently what is there to really acknowledge those who do right vs not

 

My bolding
My misquote
"Never in the field of human health has so much damage been done to so many by so few"

 

Exactly my reaction @bobbler.

Wow! An organization responsibly and promptly following the new NHS guidance. Surprising after being so mistreated and maligned for decades. Amazing to see.