MEAction: How did your local service perform?

MEAction performed a survey earlier this year, gathering data to submit to NICE for their review of the ME guideline. I think there’s already a link to the full report on the forum but just in case, it can be found here: http://y9ukb3xpraw1vtswp2e7ia6u-wpe...-ME-services-Survey-report-by-MEAction-UK.pdf

The survey asked respondents which service they’d used and MEAction have now created a ‘dynamic dashboard’ which allows the data to be viewed by region or service/clinic.

This gives an opportunity to look at variations between services but also to see what type of advice is being offered locally to a user. The web article, which has a link to the dashboard itself, is here:

https://www.meaction.net/2019/12/05/how-did-your-local-me-service-perform/

Props to @Gecko as the dashboard is built on all the hard work they put into the original data analysis.

 

At some point someone needs to ask questions about how public funds are being mismanaged. Surely?

Government says they don't check, it's up to clinics. Clinics don't do any monitoring at all, rely on feelings and anecdotes to justify their continued employment, clearly don't care about outcomes. So a foreign patient organization actually checks and results are abysmal, funds clearly being mismanaged, confirming what every small test of this approach confirmed on the way: useless.

Is there even accounting being done? How much money was wasted on these obviously useless services? It's been over a decade. That can't be cheap. For nothing at all. Might as well just burn money in an open pit and it would be a better use of those funds.

It's one thing to believe in this crap but money talks and this is just blatant misuse of public funds. Which itself is essentially the basis for the even larger misuse of public funds in IAPT. It's just bizarre that this seems OK. No one asking questions? Especially considering it was predicted. No? OK, then. Back to the money burning pit, I guess.

 

Reading through the report for the first time, it struck me what an indictment it is of current UK specialist provision and of the current NICE guidelines that have been a major factor in the form specialist provision takes. Though it contained nothing surprising, it is stark seeing so clearly set out the inadequacies of current ME/CFS provision across the whole country.

However, how do we avoid this information being used to just close down existing specialist provision and by default leave people prey to the even worse generic MUS bandwagon and the totally inappropriate IAPT services currently being rolled out?

I guess the most important first steps are that the new NICE guidelines be fit for purpose and to strengthen the embryonic political will for change. If we get the new NICE guidelines wrong it will be another fifteen years or more of at best purgatory and at worst hell for people with ME in the UK.

 

There's a lot of engagement going on by the charities for the NICE review. I'm hopeful that we'll end up with a better set of guidelines.
It's a shame we've got a year to wait to find out though.

 

I can't view this properly on my phone. A summary of highlights would be helpful if anyone has the time.

 

Unfortunately Google Sheets only seems to present the graphs in certain browsers. We did try various options but ended up having to leave it. If you don't have access to a laptop then it seems like pot luck as to whether it'll work on a phone.

Can't really give a summary as it's configurable for region and or service. If you have a particular service in mind I could generate some graphs for you.
If you want an overall view then the pdf of the main report is the best place to start, although it is a big document.

 

Thanks. There wasn't really. I'm just curious which areas are best or worse, and which themes emerge to explain why.

E.g., if clinic x is well known for their own proprietary treatment and it does really well/really poorly, that's worth noting. If they're all doing the same thing but results are all over the place, that's also worth noting.

Though I did read the main report so it sounds like there's nothing I would've missed in that; this is just a different way to view the data, correct?

 

I can't see it on my laptop. Or rather I can see it, and managed with some effort to configure to show North West clinics, but the response was all squidged up at the bottom of the screen, and I suspect across the screen too. I'm running Chrome on Windows 10.

ETA there's an arrow on the right hand side that you can close the top headers, which makes things a bit easier to view. I still found the scrolling down difficult, and that I had to scroll across to see the whole answers in the second column.

I also tried it in Internet Explorer, it was the same.

 

That'd be quite a lot of work to produce unfortunately. The idea is that it allows the regional groups to look at the specific issues in their areas and draw comparisons if needed.

You're correct, it's another way to view the data, to allow people to understand what goes on in their local service.

 

I'm also using Windows 10 and Chrome and it's presenting fine (also in MS Explorer/Edge). There's some other factor involved then.

You'd think that basing it on a Google product would be a good way of ensuring visibility across multiple platforms wouldn't you?

 

I'll be honest, I don't know what was done to publicise it as I wasn't involved then. I'll take that back as a comment to inform any future surveys.

 

Suspect it may be because laptop is "widescreen" - need the biggest screen I can get that's portable enough for travelling. So it's ratio of height to width is different to a bog standard laptop. Even when I lost the header section using the arrow half of the second set of cells was missing and had to scroll across to see them. I daren't mess with screen settings as I'm sure I'd just mess things up completely!

I'll read the full paper when I get more properly-awake time - bit caboodled today after bad night.

 

The size of your screen shouldn't really affect it. I don't know what to suggest, sorry it doesn't work for you.
Hope you feel less caboodled later!

 

The timescale to devise/publicise and complete was very short. Initially MEAction did not realise that such a survey would be useful/acceptable for the evidence submission.

It would be very useful to have a comprehensive list of local ME groups. I know MEA have a partial list.

I think it was tricky finding out info on all the different clinics as well in the time. However I think it was really worthwhile.

@Gecko has done so much on all of this, but thanks to you too @ringding for your input on this dashboard.

 

It shows that the entire provisioning of those services is completely inadequate by the basic fact that they do not themselves have any clue about the outcomes in their own services and are not even trying to find out. Either that or they do and bury the data to hide their widespread failure, which is not allowed and would be even more damning.

This is not a job a patient organization should be doing. Whoever is in charge of provisioning and funding the services is responsible for the proper handling of public resources and yet clearly not even doing the most basic assessment. This alone puts into question the very process that allowed those services to be created and continuously funded, apparently with no intent of doing any credible check on what they accomplish.

It isn't just that the services are inadequate, it's the very process that lead to their creation and continued funding, with no intention of accountable record-keeping, that is inadequate. Everything was done without proper evidence and against credible conflicting evidence. With no proper monitoring this is additionally misuse of public funds.

My feeling is that there is data and the uselessness of those services is internally known but it would jeopardize the entire IAPT project, which faces the same, and its multi-billion pound sunk cost.

 

The truth is that, as far as we discovered in our FoI study on the clinics, virtually none of them have any reliable way of checking their effectiveness. A very few actually state that they don't claim to be able to treat the ME, but can help manage it: from memory, they were the ones with better follow-up rates.

Of course, the majority also rely upon subjective assessment, such as the Chalder Fatigue Scale, with gradings of severity that can be manipulated, and it was my impression (unfortunately we had no solid evidence) that these assessments were carried out mainly at the clinics, rather than as independent follow-up.

I do remember, way back, one specialist claiming that the majority of people with ME that attended his clinic must have recovered, because they didn't come back for more treatment. On that basis, I am an utterly brilliant cook.