ME Association Website Survey: What are the most important things a GP needs to know about M.E.? | 08 January 2019

We also developed some "training" material and info for GPs.
Hven't properly rolled this out as yet but did get a clinical overview from Jo Edwards a while back.
Will post for comments later.

http://nandsme.blogspot.com/p/blog-page_23.html

Resources

GP Awareness
During meetings with Suffolk Commissioning it was agreed that the Patient / Carer Group would prepare information for GP's to raise awareness regarding ME & CFS in our region. Clinical advice was kindly provided by Professor Jonathan Edwards. The mind maps can be downloaded as PDF's, just click on the links:

ME and CFS: Referral booklet for GP's and patients

ME and CFS: Key Information

ME and CFS: What Patients Say Helps

Guide to the Care Act 2014 and implications for Providers
PDF can be downloaded from here
 
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NelliePledge said:
No they might be nominally under a Dr but the person who saw me in 2016 was a physio. There was also an occupational therapist who saw people on initial assessment as well. In some areas there isn’t a CFS clinic at all. Very few have a specialist of any kind most likely to be overseen by a psychologist. The one I went to is closed to new referrals people go to a generic pain clinic. A decent well informed GP would do a better job.
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Greetings,

I canne work the multi-quote thingimebob, but in answer perhaps to those who were talking about the inadequacies of a GP making a good diagnosis.

The NICE guideline is a framework for the NHS and in the ME/CFS guideline it says that 'primary care' i.e. frontline GPs should be capable of making a diagnosis based on the criteria and exclusionary testing etc.

Some ME/CFS specialist clinics do have 'primary care' physicians as part of the service, be they 'GPs with special interest' or consultants (immunologists and neurologists have been examples as well as psychiatrists), all of whom should be capable of second opinions and/or making a diagnosis.

But I suspect for most specialist services/clinics their primary function is to facilitate 'management advice' and to monitor. The number of sessions varies across England (where the NICE guideline was orginally directed and the provision for a network of clinics was made).

When the guideline was published, NICE also published a 'costing template' that provided the recommended number of sessions with cost implications for the NHS. The guideline itself also carries recommended number of sessions for e.g. CBT, GET, Activity Management, Sleep Management, Relaxation etc. etc.

It would be useful to learn which of the remaining NHS clinics offer the recommended number of sessions before discharge, because again I think this number various considerably.

Follow-up after discharge is yet another area that could form part of a discussion with NICE. Responsibility should pass back to primary care and the GP. But as we know, a lot of people with M.E. have little or nothing to do with their GPs for various reasons, and hence nobody is in charge of their care.

My reason for mentioning costing and sessions, was to consider how the network of clinics has declined in recent years primarily I think because of NHS cost-cutting.

My own local clinic in Cornwall was threatened with closure on the grounds of cost and it was only due to a large outpouring of patient concern - and support for the service - that the hospital bean-counters changed their minds.

Cost implications are also perhaps a factor when it comes to staffing a clinic. And we also perhaps need to consider the attractiveness of ME/CFS when it comes to recruiting doctors/consultants to take a lead role.

Sorry. Bit garbled.

Russell

Thank you to everyone who has taken part in Dr Muirhead's survey and to all the feedback being sent to my email address which I will forward to her when the survey closes on 31st January.

Edited: For clarity. Probably failed. Need me bed... :)
 
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Russell Fleming said:
When the guideline was published, NICE also published a 'costing template' that provided the recommended number of sessions with cost implications for the NHS. The guideline itself also carries recommended number of sessions for e.g. CBT, GET, Activity Management, Sleep Management, Relaxation etc. etc.
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Here is this historic NICE costing which I prepared and put on my Google drive site. It was for our "negotiation" (argument) with Norfolk and Waveney CCGS......
To Commissioner at Waveney;

"Attached, as agreed is a short 3 pages of context which lists the links to the key documents I suggested you may find helpful.
I have also attached the ‘Inequalities’ paper sent to JSCC and the questions for which we await some feedback.
We, the Service Development Working Group, look forward to meeting with you in the New Year.
NHS Suffolk can hand over all the contact details, Terms of Reference etc to allow this to be taken forward.
With regards to patient surveys, details of the past and current Healthwatch arrangement is provided.
I have the data regarding both Norfolk and Suffolk’s returns from the published report.
These were shared with Maureen Orr of Jt HOSC."

regards,.......


NICE Costs and Savings and sensitivity analysis from 2007 Guidelines (2 pages) https://drive.google.com/file/d/1M2wp_C6ZTe3SXnxI_sHoK6uNx4X_gDyu/view?ts=5c1ac8ce
 
Peter Trewhitt said:
I would have liked to see an option on understanding the negative consequences of extertion and that exercise is generally counter indicated.

Though one could argue that this should be understood under the 'treatments available' option, we need to know that doctors understand that exercise is not a viable treatment option. For me this is the most important; first do no harm.
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The closest it gets is point 2:
An understanding of the impact of symptoms and awareness of pharmacological symptom management

But I don't understand why these two quite separate issues are joined together in one point. I absolutely want GPs to have a proper understanding of the impact of symptoms (including how activity makes them worse) but there is, as far as I am concerned, no 'pharmacological symptom management'.

I don't mean to be rude, but it seems to me to be a flawed survey and so I am not taking part.
 
JohnTheJack said:
The closest it gets is point 2:
An understanding of the impact of symptoms and awareness of pharmacological symptom management

But I don't understand why these two quite separate issues are joined together in one point. I absolutely want GPs to have a proper understanding of the impact of symptoms (including how activity makes them worse) but there is, as far as I am concerned, no 'pharmacological symptom management'.

I don't mean to be rude, but it seems to me to be a flawed survey and so I am not taking part.
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Hi John,

I didn't come up with the answers, but as someone with M.E. I do take a range of medications to help with symptoms e.g. gabapentin, baclofen, co-codamol, mirtazipine etc. Not everyone does, granted, but some do. Might you not vote 'Other' and just drop me an email I can forward to Dr Muirhead?

Thanks

Russell
 
Russell Fleming said:
Hi John,

I didn't come up with the answers, but as someone with M.E. I do take a range of medications to help with symptoms e.g. gabapentin, baclofen, co-codamol, mirtazipine etc. Not everyone does, granted, but some do. Might you not vote 'Other' and just drop me an email I can forward to Dr Muirhead?

Thanks

Russell
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Hi, Russ, thanks for the reply. Hope you're doing OK.

Yes, I know some do use medication and have no problems with that as an option. It was the combining of the two different issues that made it impossible for me to pick what I wanted to select.

Sure, I could do that.
 
They forgot an option that's relevant to me: Doctors should know not to terrorise their patients by threatening to have them sectioned and treating their symptoms as delusions.

Oh and they should be aware that exercise beyond a patient's threshold can cause permanent damage.
 
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