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Help please: feedback on awareness info for GP's

eafw

Senior Member
Messages
936
Location
UK
Commissioners have asked our Patient/Carer group to put together some GP awareness material to be disseminated at the CCG Training sessions.

Can you say a bit more about what the commisioners are actually wanting from you, and how receptive the GPs are going to be ?

One thing that does need to be made clear is that ME is NOT chronic "fatigue" or anxiety/depression or feeling a bit tired/run down or "fear of exercise" etc. They need to be told that press reports and many published papers are extremely misleading and that it is dangerous for ME patients to be given wrong advice based on these misleading ideas.

Perhaps a ref to the IOM and PACE critics might be useful too ?
 
Messages
86
Location
East of England
I have given out the ME Associations book to a few GP's and they have read them.. Or at least I have noticed a positive change in attitude after they have been given the information. I would hope that others in other parts of the country would experience the same. It might help if they have something to take away and read.. Or to even put in the practice library for when they actually realize they need to learn about the condition. Good luck with the project though it sounds excellent.

@ithought Thank you for your good wishes. I have arranged for the Purple Booklet to be delivered to my local GP practice through the MEA's excellent scheme. Unfortunately it doesn't seem to have had any impact. The phrase ME or CFS has yet to pass my GP's lips! (To be fair it's not what I would call a 'progressive' practice). I've had ME since 1999 and my experience of GP's has been, as you would expect, to be very varied. So, I think some are receptive, and some just not interested. Information like the Purple booklet may pique the interest of some to learn more, but for the others, if we can get some summary information agreed it may widen interest a little more.
 
Messages
86
Location
East of England
Can you say a bit more about what the commisioners are actually wanting from you, and how receptive the GPs are going to be ?

One thing that does need to be made clear is that ME is NOT chronic "fatigue" or anxiety/depression or feeling a bit tired/run down or "fear of exercise" etc. They need to be told that press reports and many published papers are extremely misleading and that it is dangerous for ME patients to be given wrong advice based on these misleading ideas.

Perhaps a ref to the IOM and PACE critics might be useful too ?

@eafw Commissioners want something brief that they can present to GP's within say 5 minutes at their 'speed dating' training. But this is only CCG's in Suffolk. The service covers 7 CCG's and they all carry out GP training/awareness differently. We have to start somewhere though. My hope is that if we can put something together that is well received in Suffolk, the information can then be presented to the other CCG's. I take your point regarding 'fatigue' and illness beliefs and fear avoidance. We will get in as much as possible regarding what ME is and isn't. I am finding it a difficult line to put together brief information that is reasonably informative. I plan to put in something about the harms of GET (with the MEA survey as evidence) and I can reference PACE there.

When we have worked through the documents I'll post up on here again for feedback. :)
 

eafw

Senior Member
Messages
936
Location
UK
Commissioners want something brief that they can present to GP's within say 5 minutes at their 'speed dating' training.

I am finding it a difficult line to put together brief information that is reasonably informative.

Thay have set you a difficult task ! Perhaps pare it down on the details - eg don't need a fully comprehensive symptom list, and go more for a "soundbite" approach. For further reading, in addition to your material that they present at the meeting, then perhaps something like the MEA booklet for them to study afterwards ?
 

charles shepherd

Senior Member
Messages
2,239
The MEA contribution to ME Awareness Week here in the UK this year is a campaign aimed at doctors, mainly GPs, on the importance of early and accurate diagnosis of ME/CFS

This is being funded by money we raised over Christmas in the Big Give Challenge

As part of this initiative I am preparing a very short summary (800 words max) of all the key points relating to clinical assessment and DIAGNOSIS of ME/CFS - along with reasons why early and accurate diagnosis is very important

This will form a separate A4 information sheet that will accompany the new (2016) edition of the MEA purple booklet - which is now almost ready to go to the printers………...
 

charles shepherd

Senior Member
Messages
2,239
Thanks for the update on this @charles shepherd
Will the A4 summary sheet be available to order separately?

Yes - we are planning to send the 'Early and Accurate Diagnosis' fact sheet out to as many GPs here in the UK as we can

But this will partly depend on cost

If we have to do this ourselves - through post, members etc - then we won't be able to cover the cost of sending a copy to every GP in the UK

So it will depend on what co-operation or endorsement we can get from 'the powers that be' in the medical and NHS services bureaucracy……...
 
Messages
17
Further thoughts regarding the issue of GP awareness info; been thinking very hard and refining draft material for this. I would like to incorporate Charles excellent picture from 1999 which I found on the internet... if that's ok with him. Charles, could you let me know please?
Thinking of a 15 minute presentation with references and a document pack with internet references and links. First bit, a straight forward "visual index" A4 sheet entitled ;
10 Steps – 10 Minute Pathway Guide for Primary Care Practitioners
For Adults and Children with a Presentation of ME or CFS
Suggested evidenced base ; pre-specialist provisional diagnosis;“patient-centered” management & referral to specialist services