NHS England - E-learning Modules on ME/CFS

Jonathan Edwards said:
I have finally got time to look at this. I have logged back on too the NHS learning site having rediscovered my ID and set a new password. But the severe ME/CFS module says "pop-up window blocked". The other modules do the same in fact. Maybe I am not authorised.
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Sounds like it could be your browser blocking a pop up window, as those are often used by nasty ads. Most browsers allow you to disable it for a website. Here’s the instructions for Chrome or let us know what browser you’re using and we may be able to help.

Edit: Here’s guides for different browsers from wikihow.
 
JemPD said:
I did the reaching for sugar & caffeine one -
JemPD said:
I did the reaching for sugar & caffeine one - when i was mild and still working - anything that would get me through the day till i could collapse at night
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i was mild and still working - anything that would get me through the day till i could collapse at night
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I've only recently realised that this has been me, as well... I'm not sure why it took so long for the penny to drop
 
Link to the resource for those not on or wanting to go to X

Resource

learninghub.nhs.uk learninghub.nhs.uk
But that wasn’t loading for me, remove the Item works but gives a message saying you need to be registered

Resource

learninghub.nhs.uk learninghub.nhs.uk

However @Lucibee also says
Anyone can register - but the registration procedure is a bit of a pain.
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And
However... The section on pharma support has been *removed*. The final Information and Support section has been modified to remove some items that were useful - like links to Dr Nina Muirhead's PRN module, the Wellcome Trust Dialogues project etc
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I have created a general user account and been able to access the content, you just need name, email address and to tell them which area you live in and your role (patient or service user they call us). But the process is a pain, it’s not well designed and takes a lot of steps to then add a password, and security questions.

Then you hit the playback popup problems previously mentioned. Different browsers have different places to temporarily disable blocking pop-ups, usually in their settings, so do a quick search for your browser for instructions on how.

So you can access it! But the hoops to jump through are not insignificant. It’s done me in just trying. Honestly an awfully designed and implemented website, from security and usability, accessibility perspectives. But great there’s some content for us to review and discuss.
 
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Thank you @Lucibee and @hotblack. I managed to sign up. It's a long process but it went smoothly for me. I have done the module and submitted feedback.

I thought it was very good. Now we need everyone involved in care of pwME to do it too.

That means
every GP should be required to do it,
some senior people in every hospital should do the module and ensure there is a clear plan for the hospital to cater for pwME who need inpatient care.
every clinician in the ME/CFS clinics should do it and include warnings for pwME about how severe ME/CFS can get if they push themselves with exertion
 
I’m going through and making notes which I’ll share when complete but I agree with @Trish that it’s largely good and very welcome. Not perfect, not without bits I disagree with, it could be better with some tweaks, but better than anything I’ve seen from the NHS before.

If those doctors and nurses I interacted with a decade ago (and those ever since) knew what was in here and followed it (and told me) a lot of time and effort wouldn’t have been wasted. Maybe I’d even be in a better position than I am now, difficult to know. But I expect so much trust wouldn’t have been lost and I’d have had fewer awful experiences at least. I’d certainly not have spent most of my time fighting with or trying to persuade people and more time actually working with them, which is all I have ever asked.
 
Kitty said:
On an initial skim-through through it looks okay, though I haven't read it in detail. The first sentence is somewhat problematic (@Trish, hit the off button now!) but the rest is better.



Big thanks to Russell for the transcript, it must have been a lot of work.
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It's all an automated system these days. Beware of edits by RF. He did a transcript for me in 2017 which ended up with misinformation ...

The transcript suggested MEA facilitated and paid for a specialist report for a feasibility study which they had absolutely NO involvement with.
It was actually commissioned and paid for by all but one local CCG.

The controlling CCG, Waveney didn't want it. would not pay for it and rejected it's evidenced based outcomes in 2016.

Suffolk broke away from the joint Service because of this, issued a PIN and finally commissioned the specialist service for severe ME patients in Suffolk with GP Federation in 2018 under control of Dr Nacul. :giggle:
 
I’ve been through and made some notes. Overall I think this is largely good, not perfect and I will criticise below, but that’s because it’s important to highlight where I see problems. It is part of what we do here. It is 80-90% good and 10-20% not IMHO but 100% better than anything I’ve seen from the NHS before. If everyone in the NHS took this training and took he info onboard it wouldn’t solve our problems but I think it would be a net benefit to how we are seen and treated. It would influence the minds of those willing and able to.

The biggest barrier is how inaccessible it is. Forget the content, the delivery method and presentation is cumbersome and unnecessary. For me at least, maybe its not a problem for NHS staff if they’re already registered. It does save your progress at least!

Some good stuff though
Better than I have seen in a lot of places. It’s clear on impacts, variations, and on what we don’t know (mostly).

Highlights severe people need support beyond what is offered currently or for mild/moderate. Uses pretty good descriptions of severe and very severe, they get the message across that this condition isn’t what so many healthcare professionals seem to think it is.

They also highlight “ensuring medical care is provided safely at home” as key and there is a section highlighting the need for home based medical services.

The impact of being severe and of PEM on getting adequate nutrition is highlighted.

The need to avoid hospital admission as they are high risk for us is made well. I like this. As is highlighting the impact on the patient and extended recovery times of weeks to months not days. And the need for very careful planning, adaptation of normal protocols and communication with all staff involved. We just don’t see this happen and it is important it is covered.

However it does have problems
Possible disease mechanisms section should be removed. It’s unhelpful to talk about things like “impaired immunoglobulins” and ”persistent viral reservoirs”

Using phrases like “consistently complex” or even “complex” may have unintended consequences given how “complex needs” is used in health and social care settings.

Mentioning “identifying approaches to engage in meaningful activities where possible” is not something I’d agree with. Dangerously close to coaching us, it should stick to the support we need and trust we know what we want/can do.

As others have said they go overboard on the medication management (are reactions to common painkillers really a common thing), lowest possible doses for anaesthetics, use of IV saline for autonomic stabilisation, etc. I’m not medically trained so won’t comment more but it doesn’t seem evidenced?

Why have they mentioned “mast cell activation syndrome” as a risk? We have no evidence for this.

The same for the salt and fluids idea. Having good nutritional support and so on seems good too, but the biggest problems for most of us is usually practical and physical not needing ‘advice’ as such but practical support to stop declines.

Saying advice on hospital admissions should be “sought from ME/CFS specialist clinicians” is fine until you realise we don’t have any or that the BACME clinics will be asked. I’ve experienced my GP seeking advice on things from them which has lead to problems.

That BACME resources are flagged at the end is a massive red flag. It should not be in the Guidance section alongside guidance from NICE.

The charities are there in other sections though and some of the information they provide is problematic too. It feels like they all wanted links to their websites because they’re all important and were involved rather than these actually pointing to useful info.


You can submit feedback and I will do so and recommend others do. I’d love them to have consulted groups like ours, maybe used or linked to our factsheets and to remove some of the questionable bits. But overall I think this could be a useful part of the wider efforts we need to change how we are treated by the NHS.
 
hotblack said:
lowest possible doses for anaesthetics
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I would have thought that that is standard practice for anaesthetic in any condition. Surely it is determined by body weight and the length of the procedure. It is a balance between keeping the patient asleep during the procedure and making sure they wake up quickly at the end.
 
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