UK: University College London hospitals (NHS)

Ha! Responsibility for actions (and ergo non actions) and impact of them - that would be novel from most in positions where it should theoretically have been the deal breaker criteria for having their position in the UK for certain sectors. They didn’t get into their area for that. Though it should be used by NHS to cull the baddies and opportunists out of ME/CFS agreed - it’s the give away yet hardly a big ask (I lived my life thinking that was the code of being a pro and a human)

I can imagine the faux outrage at ‘the cheek of it’

and would indeed love to see that response (or non-response)

 

Thanks, if I were to do that - what would be the route to request that neurological workup - would that be my speaking to my GP?

 

You would need to speak to your GP about your concerns, you could let them know that you think the problem is neurological and your reasons why and they’ll make the referral.

 

Haha well UCLH just phoned me and said the doctor doesn't actually work on the day my appointment is booked for, so I shouldn't go the appointment.
That solves that dilemma!

 

job ad

https://www.bmj.com/careers/job/176791/consultant-and-clinical-lead

 

A clinical lead on £120k should really have the confidence not to be open-minded about acupuncture. If the job is simply to agree sympathetically with patients until the consultation is over, it should pay about a third of that.

 

I love this! LOL. £40k for agreeing sympathetically for 50m? I reckon I can do that. when's my interview?

 

On a serious note... it does seem somewhat encouraging that there are multiple references to improving the service in the job ad... but I also wonder.. realistically... how many suitable candidates are there?

 

None of this respects the intent of the NICE guidelines. So I guess they can be not just ignored but explicitly violate their intent and it's all good, do whatever feels good for the provider, not the patient.

I don't think it's possible to create a system of healthcare where the patient matters less than this. We're just some assembly-line stuff. Some of it gets thrown away. Some of it makes it. No one really cares, it's just numbers.

 

Is there some way of "raising" this with the NHS or with NICE? I have absolutely no idea how any of this might work, but if anyone with any NHS experience knows - is there some kind of channel to say "this job advert contradicts your own guidelines" etc etc?

 

Is the MEA a useful point of contact, as they are trying to keep a record of NHS compliance with the NICE guidelines and are contacting services they believe to be non compliant?

 

Is this the norm that a job description is subject to approval by... which Royal COllege?

 

I have to put it bluntly and ask whether this is someone using ME/CFS funding to fund something completely not useful to those who have ME/CFS

Because that is what I see happening and it is beyond 'it stinks' and frankly into territory of how is this nonsense not banned and action taken against it. Not OK to roll it in with conditions that are not the same and pretend the funding is going to ME/CFS which is not functional. Just because the others aren't either doesn't make it any more OK.

mind-body medicine nonsense my backside when there is no medical provision, basic medical provision for ME/CFS - and at consultant level (!!) is there really such a thing in 'mind-body medicine'???

Sorry but the NHS should not be funding mind-body medicine. Not to the extent those in the service (in the area of mind-body medicine) want it funded - I can only guess explained by 'cushy job syndrome' given the out of perspective 'supply' to any usefulness or need for those who fund the NHS.

Just because no other patient or part of the health service wants these individuals near them, doesn't mean those least supported by allies should have them dumped on them - they just shouldn't be being paid/such jobs in the NHS if they offer no use. It isn't 'find jobs for the boys and girls who do what they fancy' service

 

Maybe. Seem quite a few big red flags though. By 'requiring ME/CFS specialism' they've ensured that unless one of the few good biomed ones that still exist (given they were hounded out) were included in that, the irony is that is exactly what should not be being hired as it means they've spent the last few decades gaslighting about false beliefs and likely don't have the knowledge of the actual biomed.

Given new guidelines were only a year ago could anyone have acquired this any other way than being in one of those biopsychosocial CFS/fatigue/PPS units in the last decade?

I always thought once this was finally sorted in guidelines what we really needed was a requirement for anyone new to be 'reprogrammed' and anyone who insisted on staying who'd been doing the old stuff needed an additional stage of 'deprogramming' first. That's how sad the past situation was, and how 'opposite' the new is to the old, particularly with regards personal qualities that would be needed for new vs would have been attracted into roles in the old ideology.

Someone who wants to motivate and gaslight patients under the guise of 'it being CBT' (which to me in certain approaches can be basically manipulative and bullying) is not a safe presence for someone with bad ME/CFS to be in a room with because they get pushed around by the person who should be taking the patients lead and hearing them.

That is my gut feeling, but I don't know whether anyone closer to these might say those who were never involved at all are even worse and it is a more mixed picture than we realise etc?

It now feels a concern that needs to be strongly flagged if this 'limbo bar' is being used as a way to filter-in those who are inappropriate for ME/CFS, when the new guidelines state certain types of clinicians and this could be what is defined in such adverts?

 

I don't know much about how it all works but get the impression some CCGs/ICBs will be buying this if it covers certain areas and so a starting point might be local groups, MPs etc and writing objections to whoever might send patients and money?

This feels v important as the whole thing is cyclical where once someone is hired then the excuse is (which it was when guidelines were first confirmed) 'don't want staff scared for their jobs' when making changes from old ways to new.

You don't get to claim that and then not be updating descriptions when new positions are coming up surely

I wonder whether ME Association /Forward ME could just go ahead and put together some example templates of what these job descriptions should include and look like - that could be tweaked minorly

It would give less of an excuse/resolve the issue where it is HR not realising or knowing how to update if there were examples perhaps?

 

I emailed them and they sent a very nice email back this morning, to say thanks for raising it, and that they were already aware of it and were discussing it (the job ad).

 

This is good news, at least? I wonder who made them "aware" of it?

 

Hi all,

had an appointment with Dr Peter Gruenewald at the UCLH ME/CFS clinic and it was actually a surprisingly positive experience.

I'll send a more detailed summary later, but he made the diagnosis over the phone and added it to my record and seemed surprised that no-one had made a diagnosis already, he seemed to think there was more than enough info there already (as I did).

He said he thinks the illness is "a physical illness, with an emotional predisposition", I don't agree with the emotional predisposition part but given that the appointment went so well generally I didn't feel like arguing about it. He also ordered a load of blood tests, most of which I have had done already in the past, but some of which I haven't. The bloods were taken yesterday afternoon and I already have some of the results this morning (no interpretation yet though).

He asked me about childhood trauma and adult trauma, I answered both very concisely ("childhood trauma - yes - home life was very unstable and I moved out as soon as I could, adult trauma - no I don't think so"), and he said "ok" and moved on...

There were some aspects of things he asked and suggested which struck me as a bit a wacky, I'll go into more detail when I do a full post, but in general I got what I wanted out of it - a diagnosis and an approach where the doctor actually had the list of differential diagnoses and started the process of methodically ruling them out either by taking a history, blood tests, or both.

But overall, it was actually a surprisingly positive, constructive experience. He didn't question, undermine or dismiss anything I said, seemed to be very on-side, and didn't mention anything about mistletoe!

More details to come later as mentioned..

 

Going back to the beginning and TRACCS: I attended a Grand Round this week given by Dr Segal. The case was of fatigue, possibly Addison's which probably was not Addison's. The review material was straight BPS dogma as if nothing had changed. Some guidelines were referred to but not NICE for ME/CFS. ME/CFS was mentioned as a possible alternative explanation for the problem - as if they were unsure about this. TRACCS was promoted as the way to go. I am afraid I see little prospect of the belief in this approach changing. The responses from the audience were not encouraging either. At least there was no mention of GET or CBT or the Lightning Process.

It struck me that many of the medical audience might not know what 'ME/CFS' meant. They would recognise ME and CFS but the combined name is something designed by people in the field and I am not sure it is known much outside that. It was also slightly strange to hear the diagnosis mentioned as something the audience might consider a possible alternative - as if it was something rare not heard of much that one could not be sure about. I wondered if the presenter was being cautious in the hope of sounding politically correct to the majority.