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NICE Guidelines Review - Aug 2013

user9876

Senior Member
Messages
4,556
Last time they seem to have got the university of york to do a literature review which looks at a lot of papers in a very trivial way. I.e. tabulates things claimed in the papers.
http://www.nice.org.uk/nicemedia/live/11630/34188/34188.pdf

I've only had a quick glance but I think there is a big issue with this style of review since drug papers are far more honest in reporting than those produced by the psychiatrists who spin their results and miss out data. Since the reviewers don't read critically then the basis of the review is poor.
 
Messages
13,774
We're pretty screwed if the literature review involves just totting up the reported results from different studies. There's so much quackery in CFS than unless they take the time to look critically at the actual evidence themselves their conclusions will simply end up reflecting the prejudices of those researchers most able to churn out lots of papers.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Another thing NICE promotes but I feel fails in practise is the use of 'care plans' also known as 'management plans'.

I raised this at our recent meeting with the commissioners to be told that several attempts had been made to make use of such things for people with long term conditions (essentially both a record of treatment, who's involved, and any strategy including personal goals etc.) but they had not proven successful which I took to mean they couldn't quite figure out how to do such a thing when each 'department' is working often from different computer systems.

However, NICE are very keen on using such things and I'd personally like to see them evolve into something akin to a 'contract of care' if you like. An agreement with all those 'multi-disciplines' who are supposed to be involved (across health and social care) that lays out your progression through the system.

I can't see any reason why patients and GPs could not maintain such plans and I know they are certainly used in respect of other conditions though not for all patients. It would help a patient to see how their care is being structured and could prove a great help.

There are plans afoot to enable patients access to their own medical notes via the internet (heaven's forbid imagine how that will get cocked-up) - indeed this has all ready proven the case in respect of some GP surgeries in the land - if that is to happen then why not care plans too?

Makes no sense to me that NICE should be promoting them on the one hand and then in the trenches they are being seen as impractical. Realistically I strongly suspect they see them as being 'too much of a challenge'. Idiots!

Afore I go.... one more thing. NICE doesn't specify the degree to which follow-up appointments/reviews should occur whilst someone is disabled by their ME. I think this is an important 'missing' factor.

As is the need for consideration to be afforded to co-morbidities. Such things would be picked up (in theory) only by regular reviews.

Oh buggar! Thought of something else now. Bad case of verbal diarrhoea this evening it would seem :)

And as I said before - the NICE Guidelines are very scant in regard to what exactly a 'specialist service' should actually be. They mention the involvement of neurologists, immunologists etc. but it's very much on an ad-hoc 'only if you are able to afford it' basis.

There is no 'model' service provision and whilst this could raise some controversial discussion (though it isn't as if we as patients or 'service users'* haven't all ready had these discussions) I do think that NICE should point the way, should indicate to the commissioners how exactly multi-discipline care should be applied in all cases.

When all that cash was dropped on local PCTs from da government to provide a specialist provision they were left to their own devices when it came to implementation. No follow-up. No review as to effectiveness. No 'model' approach. No guidance. Buggar all really.

And now all that money has run out (some time ago and perhaps even diverted - oooo scandal conspiracy :D) and the Government is pumping funding into long term psychological management for long term conditions and very little else outside of acute care - we really need to bring pressure to bear in this regard also.

Aw crap. I could be gainfully employed for several lifetimes pursuing all this stuff and the worst thing is (although I do think I 'know my enemy' and therefore have realistic expectations) I am no longer convinced any of it is worth it. Perhaps because of those realistic expectations. Who knows?

I have learned though not to be too disappointed by perceived or real inaction from any of my (our) efforts. There is only so much we can do after all. And I am not dissuaded (yet) from trying my best.

*Don't you just loathe this term? Service Users! Unfortunately I have been present at several meetings where patients were referred to as such.

I objected most strongly - especially on one occasion - really lost it at that point. Fools!

Who do they think they are, Tesco's? No. If they were Tesco's they would have more respect for their customers who could always take their trade to the competition.

We haven't got any choice. Not like we can pop along the road to Morrison's and get ourselves an appointment with someone else, is it?
 

user9876

Senior Member
Messages
4,556
Another thing NICE promotes but I feel fails in practise is the use of 'care plans' also known as 'management plans'.


We had huge trouble when a consultant refused to write a care plan but instead wrote ambiouous letters to the GP. I think your point about a care plan is important as this sets out what treatments have been agreed and what has not.

You mentioned co-morbid conditions. Another problem is that other doctors (e.g. orthapedic surgons) are not aware of the problems that things like long waits and appointments can cause. So a care plan that could be communicated with other doctors would be good.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Last time they seem to have got the university of york to do a literature review which looks at a lot of papers in a very trivial way. I.e. tabulates things claimed in the papers.
http://www.nice.org.uk/nicemedia/live/11630/34188/34188.pdf

I've only had a quick glance but I think there is a big issue with this style of review since drug papers are far more honest in reporting than those produced by the psychiatrists who spin their results and miss out data. Since the reviewers don't read critically then the basis of the review is poor.

Hi user9876, this is part of my argument against "evidence" based medicine. Its about crunching the numbers without understanding what those numbers really mean. Bye, Alex
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Last time they seem to have got the university of york to do a literature review which looks at a lot of papers in a very trivial way. I.e. tabulates things claimed in the papers.
http://www.nice.org.uk/nicemedia/live/11630/34188/34188.pdf

I've only had a quick glance but I think there is a big issue with this style of review since drug papers are far more honest in reporting than those produced by the psychiatrists who spin their results and miss out data. Since the reviewers don't read critically then the basis of the review is poor.

Thanks for the link, user.
I've just noticed that you've linked to a draft version.
Here is a list of the final Appendices:
http://guidance.nice.org.uk/CG53/Guidance
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
What exactly would a 'Management plan' be in practice?

I raised this with our new GP clinical commissioning group. Apparently, various attempts have been made over several years to put this best practice into, well, practice but with varying degrees of success.

Essentially, it is a written plan that is updated each time a patient interacts with the NHS. It would include things like symptom record, treatments, etc.

The idea being that it formed a more personalised and comprehensive record of a patients progress with their long term condition.

One of the issues was not so much what would go into it - but how it would be stored and updated and circulated amongst the relevant medical professionals.

It couldn't become something akin to the 'patient record' that is purported to be maintained by all GPs for example. I am sure we all have less than satisfactory experiences of those.

Would it be maintained by the patient perhaps? How would/could that work? Would it be realistic? Should it be a computer-based record accessible by all professionals? How would that work?

The idea behind multi-disciplinary care and involvement is that each professional is aware of the others' input and what each are doing/how they are involved. The 'care plan' was supposed to help 'glue' this all together.

Like I said though, the idea is fine - it's the practical implementation - and funding - and communication - that appears to have led to it never really having been implemented.

Thing about how hard it has been (why I really don't know) to link-up all our medical records throughout the NHS. For each GP surgery to maintain a viable computer-based system.

In theory these initiatives seem great. In practice the NHS don't appear cut-out to implement them.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I raised this with our new GP clinical commissioning group. Apparently, various attempts have been made over several years to put this best practice into, well, practice but with varying degrees of success.

Essentially, it is a written plan that is updated each time a patient interacts with the NHS. It would include things like symptom record, treatments, etc.

The idea being that it formed a more personalised and comprehensive record of a patients progress with their long term condition.

One of the issues was not so much what would go into it - but how it would be stored and updated and circulated amongst the relevant medical professionals.

It couldn't become something akin to the 'patient record' that is purported to be maintained by all GPs for example. I am sure we all have less than satisfactory experiences of those.

Would it be maintained by the patient perhaps? How would/could that work? Would it be realistic? Should it be a computer-based record accessible by all professionals? How would that work?

The idea behind multi-disciplinary care and involvement is that each professional is aware of the others' input and what each are doing/how they are involved. The 'care plan' was supposed to help 'glue' this all together.

Like I said though, the idea is fine - it's the practical implementation - and funding - and communication - that appears to have led to it never really having been implemented.

Thing about how hard it has been (why I really don't know) to link-up all our medical records throughout the NHS. For each GP surgery to maintain a viable computer-based system.

In theory these initiatives seem great. In practice the NHS don't appear cut-out to implement them.

This is NHS Choices entry relating to care plans: http://www.nhs.uk/Planners/Yourhealth/Pages/Careplan.aspx
 

PhoenixDown

Senior Member
Messages
455
Location
UK
...One of the issues was not so much what would go into it - but how it would be stored and updated and circulated amongst the relevant medical professionals.

It couldn't become something akin to the 'patient record' that is purported to be maintained by all GPs for example. I am sure we all have less than satisfactory experiences of those.

Would it be maintained by the patient perhaps? How would/could that work? Would it be realistic? Should it be a computer-based record accessible by all professionals? How would that work?

...

In theory these initiatives seem great. In practice the NHS don't appear cut-out to implement them.
I've done a data protection request on my medical records and you are quite right. There's much that's either incorrect or totally missing.

At the end of the day though, without adding treatments and tests to the guidlines, and changing the counter-productive biopsychosocial dogma, all the records in the world won't help us.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
For those who haven't seen this yet, these are the sort of arguments that we will be up against:

Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development
Charlotte Smith, Simon Wessely
Journal of Neurology, Neurosurgery & Psychiatry
Published online November 17, 2012
doi: 10.1136/jnnp-2012-303208
http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.full.pdf
http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.abstract
 

PhoenixDown

Senior Member
Messages
455
Location
UK
Thanks for the link, Bob.
http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.full.pdf said:
treatments for ME/CFS, namely CBTand GET.3 The PACE trial
is a very large (n=640) and well conducted (1 year follow-up
rate of 95%) multicentre randomised study, funded by the
Medical Research Council, Department of Health and
Department of Work and Pensions, and ironically also the
Scottish Chief Scientist’s office, and one of whose major
centres included Edinburgh. It tested the effectiveness and
safety of adaptive pacing therapy, CBT, GET and specialist
medical care.18 One of its stated aims was to test the safety of
the different treatments, in direct response to claims that either
CBTor GETwere dangerous.20 The results confirmed and added
to the existing body of research, showing that ‘CBT and GET
can safely be added to specialist medical care to moderately
improve outcomes for CFS’.18 The issue of safety is now
resolved beyond reasonable doubt—all four management
approaches had an excellent safety profile, with little differences
between any.18
What joke, "Well conducted", we've been through this before in the PACE Trial thread so I won't repeat everything that's already been said. It still irks me that skeptics and quack busters seem to have a blind spot on this issue.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Shepherd discovered this and posted on Facebook. I haven't been through any of it yet I am afraid:

Clinical guideline development methods

http://www.nice.org.uk/aboutnice/ho...ds/clinical_guideline_development_methods.jsp


The guidelines manual has been updated after public consultation. The manual explains how NICE develops clinical guidelines and provides advice on the technical aspects of guideline development. This document replaces 'The guidelines manual' (last updated January 2009) and 'Guide to the short clinical guideline process 2009'.

The 2012 edition of 'The guidelines manual' describes the process and methods used for all clinical guidelines starting scoping after 1 December 2012. Guidelines already in development at this date will switch to the methods and processes described in the 2012 edition at an appropriate point during development. The draft and published full guidelines will specify which edition of 'The guidelines manual' was used for each stage of development.

The guidelines manual 2012

NICE published a draft of 'The guidelines manual' for public consultation during 2012. This table contains the comments from stakeholders and responses from the Centre for Clinical Practice at NICE:
Further information

This page was last updated: 29 November 2012

To what extent they have been updated - or whether it reflects procedural changes - I don't yet know.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
In terms of the PACE Trial, and the recent NICE guidelines 'mini-review' (I don't know the official name for it), this is the only thing of substance that the document says about PACE, that I can see:
Review of Clinical Guideline (CG53) ± Chronic fatigue syndrome/
myalgic encephalomyelitis (or encephalopathy): diagnosis and
management of chronic fatigue syndrome, myalgic encephalomyelitis
(or encephalopathy) in adults and children.
The results of the study
indicated that either CBT or GET, when added to SMC, are
moderately effective treatments for CFS. The results of the study
are in line with current NICE guideline recommendations on the
management of CFS/ME.
http://www.nice.org.uk/nicemedia/live/11824/53532/53532.pdf
http://www.meassociation.org.uk/wp-content/uploads/2011/03/53532.pdf
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Thanks Bob. That's pretty much the same as their interim review following publication of PACE I seem to recall. No change to protocols. Appreciate you looking :)
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Thanks Bob. That's pretty much the same as their interim review following publication of PACE I seem to recall. No change to protocols. Appreciate you looking :)

Ah, that is from the interim review. Sorry for the confusion. I wasn't sure if that excerpt had been widely quoted. I don't remember having seen it quoted.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Charles Shepherd MEA Facebook comment 15 December 2012:

...The NICE guideline review - if it takes place, which has to yet been fully confirmed - will focus on looking at NEW research evidence (RCTs in particular) relating to MANAGEMENT that has appeared since publication of the original guideline in August 2007. Unfortunately, this type of research may not even hit the radar at NICE.

For anyone who is thinking about getting involved with the NICE ME/CFS guideline review process in 2013 it's work noting - as we are discussing here - that the review will want to look at NEW EVIDENCE relating to MANAGEMENT of ME/CFS (and that includes clinical assessment and diagnosis) that has appeared since 2007. This means RCTs that have been published in peer reviewed journals. They are not going to spend much of their time looking at criticism of what has been published. And new research relating to causation will only play a very minor role in their decision making process. I am not defending NICE - just pointing out facts of life so that people have some understanding of what will happen when the guideline is reviewed.


The MEA will obviously be making a submission to NICE - a major part of which will be the NEW PATIENT EVIDENCE from our 2012 survey of CBT, GET and Pacing - the results from which are now being analysed. The preliminary results from the survey will be discussed at a meeting in mid January.