UK Action: Ask CCGs to buy MEA Purple Books for GP Surgeries

I saw that Kingston CCG had tweeted that they would ensure all GP Practices have a copy of the MEA Purple Book, following this recommendation by the Richmond and Kingston ME Group.

So I replied asking if they would encourage Wandsworth CCG to do the same. I got a positive Twitter reply from Wandsworth.

Might be worth anyone on twitter using these Tweets as a way to encourage other CCGs to follow suit: as peer to peer good practice.

A small, but perhaps important step. Also think GPs will likely give it a higher factor in their practice as a result.

Ed: typo (m)asking; a time/anyone
https://twitter.com/user/status/1219960180328280064

 

Wonder if MEAwarenessHour might spread word @Michiel Tack ? Best if requests come from ppl in the relevant area.

 

I did the same for South Gloucestershire and got a positive response.
I also tweeted all the others in the SW, during MEAwarenessHour, but have not had any responses. Was thinking of emailing them individually instead.

 

A lot of CCGs seem to be members of this group: https://twitter.com/i/lists/93270391

 

I can't really see this happening. Once the CCG people read the book and find that it is against CBT/GET/etc (it is, right? Please tell me it is??), they will surely change their minds. They're not gonna go giving GP's a book that disagrees with the official NHS line.

 

They don't actually need to buy them (although I'm sure the MEA will appreciate the funds)
Note this only applies to printed copies.

https://www.meassociation.org.uk/shop/books/mecfspvfs-an-exploration-of-the-key-clinical-issues/

 

I actually did this and got the ME Association to send a copy to my Practice. One GP told me he was too busy to read it and another said it was still on her desk to read...

 

I imagine GPs have a lot of reading to do about all sorts, including admin stuff, all of the time. This will be seen as reference material and not something to sit down and read cover to cover.

There's no harm in them having a copy for reference though. It makes it far more likely that if a patient disagrees with the GP pointing out the advice being given is at odds with the MEA, then the GP will pick up the purple book and look at the relevant section.

Once they refer to it once they're more likely to do it again.

 

well they are quite happy to have the MEA video on their website; wonder why that is(?)
https://www.s4me.info/threads/dialo...os-released-sept-2019.6186/page-4#post-205561

 

I did the same. Sent it to two connected GP surgeries. I’ve spoken to a few different GPs at the practices since then, no one got back to me about it or mentioned that they had read it.

 

Sorry I don't have the cognitive function to work out what you're implying. Can you spell it out to me please?

 

My understanding is that even "full-time" GPs have a day off a week for study (and no, I'm not having a go at the definition of "full-time" - GPs work ****** hard).

 

What the GPs study may not be entirely up to themselves though. It may be stuff they have to do to keep current, or be obliged to do by their CCG. I should imagine they have more study material than they have time to study it.

I had ridiculous amounts of manuals and study mater - such a relief when stuff started coming out on CD. There was simply no way you could read and absorb it all. Some was essential study material, others were just for reference as and when.

If you want a busy GP to study ME then that will have to come from the top down, unless they have a special interest.

I think it's worth them having a copy of the book for reference though.

 

I can totally understand that, and my GPs are clearly drowning in work, but I find it frustrating that once again ME comes bottom of the pile and it's not seen as serious enough to be priority reading. With no treatment and no way of identifying who might develop it, surely more than having it for reference is needed - what if there is something they could be trying that might help even one patient to be less limited? Even if it's referring someone to a speciality that might be able to help rather than just leaving us all to stumble about blindly? I feel this is catch 22 - we don't have enough publicity to be taken seriously so we aren't. That sounds very angry but am full of PEM today and fed up of it!

 

@JellyBabyKid. I completely agree. GPs need to be properly educated about ME and I mean properly.educated not this MUS /IAPT shite.

Most of them have zero concept of how much suffering is caused because, while they usually see patients when they're sick, they only see ME patients who are well enough to go when they're well enough to go.

NICE, the RCGP, the NHS and CCGs all have a top down responsibility here. Even without effective treatment a lot more could be done (& I don't mean CBT!).

I reckon most GPs will be horrified and angry by how badly they have been mislead about ME. I am sure many will look back on some of their patient interactions with deep regret.

Even if NICE guidelines change for the better it's hard to know just how far reaching those changes will be.

 

Thank you @Invisible Woman . Glad to know i was making some sense!

Excellent point about seeing GP's - I shall try and remember to make this point to mine when I see her next.

None of it is good enough and it is doubly frustrating as it has gone on so long and shows little sign of changing.