NHS England - E-learning Modules on ME/CFS

[hotblack]

Yes I have sympathy with NHS staff in general but not here. It’s all well and good talking about the struggles NHS staff have, the NHS needs a lot of changes. But using any if thise problems in response to how people with ME/CFS are treated is a completely unacceptable distraction IMHO. People with other conditions are not treated like we are.
Failures happen with other conditions because of the wider problems but there isn’t the systemic disbelief and disregard that we face.

The response from workers in the NHS cannot be ‘oh but we need xy or z’ or ‘oh but its hard for us’ every time people with ME/CFS bring up the neglect and harms we face. It’s tone deaf and tbh shows how little regard they have for us and how they just don’t see the scandal in front of them and that they are a part of. We all face it with every interaction we have with all levels of NHS workers and we have all seen the refusal of those people to listen or accept. It’s perverse that we are expected to maintain sympathy for NHS workers when they almost universally show so little for us.

The eLearning modules were of course never going to change things at scale, we knew that. And I agree we can’t blame individual frontline staff for that. But a change of attitude is needed and educating medical professionals, giving them the information they need and correcting the all to common misguided ideas about us and our condition is vital. And those responsible in government and the NHS said the at these modules would change things and the Royal College of Physicians made promises they have not kept. It is vital we stick to calling them out on that, holding them accountable and not being distracted.

I have always supported the NHS and those who work in in it. Many of my family and friends have. And I want to continue to support the NHS. But honestly my experiences as someone wih severe me/cfs over a decade have eroded all trust and all faith and all sympathy. It will come back if people within the NHS start to change. But it’s on them to do that.

 

[bobbler]

Yes I have sympathy with NHS staff in general but not here. It’s all well and good talking about the struggles NHS staff have, the NHS needs a lot of changes. But using any if thise problems in response to how people with ME/CFS are treated is a completely unacceptable distraction IMHO. People with other conditions are not treated like we are.
Failures happen with other conditions because of the wider problems but there isn’t the systemic disbelief and disregard that we face.

The response from workers in the NHS cannot be ‘oh but we need xy or z’ or ‘oh but its hard for us’ every time people with ME/CFS bring up the neglect and harms we face. It’s tone deaf and tbh shows how little regard they have for us and how they just don’t see the scandal in front of them and that they are a part of. We all face it with every interaction we have with all levels of NHS workers and we have all seen the refusal of those people to listen or accept. It’s perverse that we are expected to maintain sympathy for NHS workers when they almost universally show so little for us.

The eLearning modules were of course never going to change things at scale, we knew that. And I agree we can’t blame individual frontline staff for that. But a change of attitude is needed and educating medical professionals, giving them the information they need and correcting the all to common misguided ideas about us and our condition is vital. And those responsible in government and the NHS said the at these modules would change things and the Royal College of Physicians made promises they have not kept. It is vital we stick to calling them out on that, holding them accountable and not being distracted.

I have always supported the NHS and those who work in in it. Many of my family and friends have. And I want to continue to support the NHS. But honestly my experiences as someone wih severe me/cfs over a decade have eroded all trust and all faith and all sympathy. It will come back if people within the NHS start to change. But it’s on them to do that.

and the issue is the number who have found more than enough time for the wrong thing - pushing ideologies with huge sophism onto patients claiming the bs like expectations (NLP? just reading a nonsense book of pop fiction that they thought was 'science', LP - whehter its 'chatting to their mate with an eye to handing this person off' or being hooked in themselves like a modern version of the tupperware party seller)

I'd bet my bottom dollar thing like the RCGP and so on are pushing their thing claiming it is 'the word' but very much the opposite and all about politics of those at the top having either been captured by bacme or the other way round.

SO no, from a liability point of view I think unless they make it mandatory then condisering things like the prevention of death recommendations about the deliberation confusion left where the 'lets have a debate until the patient dies so those prefering to claim cbt again would help and the most important thing is for the person to never have any medical care for anything ever win both ways - they win by making it clear to the patient the only thing that crew will be allowed to access before time runs out is the thing that doesn't work and harms' is with those who chose not to make it mandatory.

If they do then the blame lies with 'others' - those who create competing stuff that isn't in line to confuse staff they think they've done it or to muddy the messages, and to those staff who didn't read it fully (and then if that's because they didn't have the time then they can battle over why they aren't given the time etc - ie the aftermath debriefing being about that real issue they want tackled too)

Not putting it on the list, no matter what the issues are once it is there, is choosing to say it isn't important in this context isn't it?

I feel greatly for those who are already doing crazy hours effectively for free without that being about 'because it will pay off after a few years when/if (and that's where they should think of and know and realise they are only one bad virus + overdoing it away from this wrecking who they are) I get to the promotion this will lead to'. But a lot of those in charge of the bad decisions are those at the levels or in the areas (brought in as someone from the psychosomatic dept that aren't doing the 24hr shifts but just turning up to espouse their false beliefs 9-5 that the pain shouldn't be investigated just tell them to distract themselves types) where they aren't on the breadline.

Of course we need people who are those people to be doing it for many reasons, as they aren't always there and when they are someone needs to be watching so if the 'beliefs' of those people apparently mean they want to override treatment norms then at least they feel other witnesses are watching.

Except that doesn't really work either in healthcare does it? I mean that oversight needn't be and is useless being someone down the hierarchy but in hospital needs to be a safety officer with clout who is higher up the administration and prepared to and back by those running the place to take problem characters out of being allowed near a patient and require others to step in and not 'refuse care'.

It does feel like nothing changes other than the honour of these people to stand up and even be honest - even at the time they just hide behind made up new stories they make up about beliefs that are just to hide 'nope for no good logical reason I want to ensure these people don't get access to medicine' in something more wordy than the old days because they are cowards who want to play the law and play any consequences and play truth if it comes to inquests etc. I mean that's what these made-up other peoples guidelines and made up 'therapies' have always been about if we are honest.

But yeah we've different levels of battles, the real 'don't know/didn't realise' who might just do the right thing and are lower down the chain and about more and more likely to encounter for short visits. And ... who will become the bigwigs with power one day some of them. But don't have spare time for enough sleep these days.

ANd then this combo of people not in that situation at all who impose these wrong things for all sorts of wrong reasons.

 

[Sean]

But using any if thise problems in response to how people with ME/CFS are treated is a completely unacceptable distraction IMHO. People with other conditions are not treated like we are.
Failures happen with other conditions because of the wider problems but there isn’t the systemic disbelief and disregard that we face.

Yes, while I am sympathetic to individual clinical staff, who mostly do work hard trying to deliver in increasingly constrained and under resourced circumstances, that is still no excuse for mistreatment of ME/CFS patients when patients with other conditions are not usually mistreated in anything like the way we are. Not even close.

and the issue is the number who have found more than enough time for the wrong thing

Yes, plenty of time and energy and funding for that.