MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?
- Thread starter Dx Revision Watch
- Start date
Yes, that too.
Been reflecting on this...given the notorious demands of junior doctor training (long hours, no sleep), there's very little chance that a person with a chronic condition would get to become a doctor. Wonder what the stats would be on young medics with disabilities? Fewer than in the general working population? Fewer than among other young professionals? Almost certainly. This is a real problem and a good reason for patient experience as described by patients themselves to be a major part of medical training, medical conferences, and guideline decisions.
Doubt this recent Muppets conference had any patients or carers to speak - wonder how common that is at these events? What are they learning if they're not learning how patients feel about treatment?
Doubt this recent Muppets conference had any patients or carers to speak - wonder how common that is at these events? What are they learning if they're not learning how patients feel about treatment?
@lilpink would it be a good idea to put the WEA group card in a separate thread to alert people to sign. I suspect some find this thread too depressing to plough thro'.
@Dx Revision Watch Thank You so much for putting all this in the "PR Domain". I have been unable to bring myself to like some of the posts, but your dedication and persistence is appreciated.
I cannot currently locate the thread where you have summarised CMRC info on its charter. I came across a printed version of the CMRC charter, dated 25 Feb 2013, which I could scan or possibly find on downloads, if that helps.
@Dx Revision Watch Thank You so much for putting all this in the "PR Domain". I have been unable to bring myself to like some of the posts, but your dedication and persistence is appreciated.
I cannot currently locate the thread where you have summarised CMRC info on its charter. I came across a printed version of the CMRC charter, dated 25 Feb 2013, which I could scan or possibly find on downloads, if that helps.
Yes, thank you so much, @Dx Revision Watch. They would love all their activities to slip quietly under the radar!
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Yes, that's a central issue. You might get healthy disabled people training to be medics, but chronically ill and more severely disabled would be less likely to be able to train. And some of the dangerous ideology is also coming out of the universities. There needs to be some way to tackle this, far more input from the people directly affected, otherwise the continued othering of ill people will continue, compromising our healthcare and even putting lives in danger.
Hrm, aren't lifetime achievement awards given at the end of someone's career? 
The quacks believe that certain symptoms which can be influenced by thoughts or feelings are always due to psychosomatic factors: tachycardia, pain, fatigue, etc. If everyone with a genetic disease has those symptoms, it accordingly must be psychosomatic, in their warped little world. They won't allow for the possibility that those symptoms can be caused by purely physiological factors.
So they will claim that the research, while showing that EDS affects collagen, also shows that EDS causes psychosomatic symptoms. Their conclusion is basically that the gene which damages collagen also causes the same people to imagine symptoms. EDS goes from being a genetic collagen disorder to a genetic collagen disorder + genetic psychiatric disorder (which is somehow still magically fixed with CBT).
This is why you don't let quacks conduct genetic research. Ever.
The quacks believe that certain symptoms which can be influenced by thoughts or feelings are always due to psychosomatic factors: tachycardia, pain, fatigue, etc. If everyone with a genetic disease has those symptoms, it accordingly must be psychosomatic, in their warped little world. They won't allow for the possibility that those symptoms can be caused by purely physiological factors.
So they will claim that the research, while showing that EDS affects collagen, also shows that EDS causes psychosomatic symptoms. Their conclusion is basically that the gene which damages collagen also causes the same people to imagine symptoms. EDS goes from being a genetic collagen disorder to a genetic collagen disorder + genetic psychiatric disorder (which is somehow still magically fixed with CBT).
This is why you don't let quacks conduct genetic research. Ever.
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Hrm, aren't lifetime achievement awards given at the end of someone's career?
The quacks believe that certain symptoms which can be influenced by thoughts or feelings are always due to psychosomatic factors: tachycardia, pain, fatigue, etc. If everyone with a genetic disease has those symptoms, it accordingly must be psychosomatic, in their warped little world.
They won't allow for the possibility that those symptoms can be caused by purely physiological factors. So they will claim that the research, while showing that EDS affects collagen, also shows that EDS causes psychosomatic symptoms. Their conclusion is basically that the gene which damages collagen also causes the same people to imagine symptoms. EDS goes from being a genetic collagen disorder to a genetic collagen disorder + genetic psychiatric disorder (which is somehow still magically fixed with CBT).
This is why you don't let quacks conduct genetic research. Ever.
The quacks believe that certain symptoms which can be influenced by thoughts or feelings are always due to psychosomatic factors: tachycardia, pain, fatigue, etc. If everyone with a genetic disease has those symptoms, it accordingly must be psychosomatic, in their warped little world.
They won't allow for the possibility that those symptoms can be caused by purely physiological factors. So they will claim that the research, while showing that EDS affects collagen, also shows that EDS causes psychosomatic symptoms. Their conclusion is basically that the gene which damages collagen also causes the same people to imagine symptoms. EDS goes from being a genetic collagen disorder to a genetic collagen disorder + genetic psychiatric disorder (which is somehow still magically fixed with CBT).
This is why you don't let quacks conduct genetic research. Ever.
Yes I can do that:
http://forums.phoenixrising.me/inde...ty-in-thanks-for-their-position-on-mus.51585/
http://forums.phoenixrising.me/inde...ty-in-thanks-for-their-position-on-mus.51585/
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I was puzzling about why hypothyroidism would be on that list. I suffer from a number on that list, hypothyroidism included (diagnosed long before ME/CFS).
I suspect that it's there as there are some people (mostly women of course) who are diagnosed, and who take the only medication given out now, Thyroxine, (T4) but they still suffer from hypothyroid symptoms despite the T4, and their labs all showing 'normal'. At the moment, if you are lucky with an endocrinologist you MIGHT be permitted to also take some Liothyronine (T3), especially if they measure your FT3 and see it is low, but T3 is on the NHS list that came out recently with a view to disallowing altogether. We will know later this year I expect.
I can see a situation in the future in the UK where however ill you are on T4 only, you will not be permitted anything else to treat the condition. Years later, much like Natural Desiccated Thyroid (once freely available) disappeared from the collective memory, so could T3 in the UK. Those sufferers will then be conveniently slotted along with these others listed here, into somatic sufferers. They will not be believed as it's cheaper and more convenient to ignore them.
I am one of them - on T3 only at present permitted by the NHS 4 years ago. The only saving grace is that T3 is freely available in other countries at present so the UK cannot bury it quite so conveniently.I also have migraine, IBS, chronic fatigue (syndrome), and food sensitivities, although through years of research and trial and error I have improved my management of all of them much of the time. I also suffer from anxiety, and always have, but physical illness has made that worse - so much harder not be anxious when you cannot rely on your body to work properly. I had eye drops in last week to dilate my pupil which took over 3 days to clear - would they consider this also to be somatic re drug intolerances? Caused by anxiety?
The other category re the hypothyroidism on this list could be those people who are clearly ill and hypothyroid but don't even get a chance to try T4 as 'the computer says no' in that their TSH does not reach the required figure (which is set higher in the UK than in the US). These kind of people would slap a 'somatic' label on them too.
I suspect that it's there as there are some people (mostly women of course) who are diagnosed, and who take the only medication given out now, Thyroxine, (T4) but they still suffer from hypothyroid symptoms despite the T4, and their labs all showing 'normal'. At the moment, if you are lucky with an endocrinologist you MIGHT be permitted to also take some Liothyronine (T3), especially if they measure your FT3 and see it is low, but T3 is on the NHS list that came out recently with a view to disallowing altogether. We will know later this year I expect.
I can see a situation in the future in the UK where however ill you are on T4 only, you will not be permitted anything else to treat the condition. Years later, much like Natural Desiccated Thyroid (once freely available) disappeared from the collective memory, so could T3 in the UK. Those sufferers will then be conveniently slotted along with these others listed here, into somatic sufferers. They will not be believed as it's cheaper and more convenient to ignore them.
I am one of them - on T3 only at present permitted by the NHS 4 years ago. The only saving grace is that T3 is freely available in other countries at present so the UK cannot bury it quite so conveniently.I also have migraine, IBS, chronic fatigue (syndrome), and food sensitivities, although through years of research and trial and error I have improved my management of all of them much of the time. I also suffer from anxiety, and always have, but physical illness has made that worse - so much harder not be anxious when you cannot rely on your body to work properly. I had eye drops in last week to dilate my pupil which took over 3 days to clear - would they consider this also to be somatic re drug intolerances? Caused by anxiety?
The other category re the hypothyroidism on this list could be those people who are clearly ill and hypothyroid but don't even get a chance to try T4 as 'the computer says no' in that their TSH does not reach the required figure (which is set higher in the UK than in the US). These kind of people would slap a 'somatic' label on them too.
Thank you, MEMum. And yes, it is dreadfully depressing, and overwhelming, too, and I really do not know how we in the UK and EU countries can stem the tide.
Thanks, but that version dated 25 Feb 2013, is one of the versions I had uploaded to the thread, which is here:
http://forums.phoenixrising.me/index.php?threads/trial-by-error-continued-cmrc-to-virology-blog-“f-k-off-”.51340/page-3#post-848160
What I was looking for is a version of the Charter that has the wording in bold, brown, below:
It had been quoted in a PR thread by someone else a couple of years or so ago but I haven't been able to find a copy of a version with that wording still online.
Version: 23 February 2013
3.1.3. Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.
-------------------------
Version: Nov 2013
3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research.
-------------------------
Version: ?
3.1.3. All members must not take part in the harassment of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research. This does not prevent engagement in appropriate scientific debate.
-------------------------
https://www.actionforme.org.uk/reso...k-cfs/me-research-collaborative/cmrc-charter/
Current Version: August 2016
3.2 Membership Requirements
Good scientific debate promotes and drives the highest quality of basic and applied evidencedbased
and peer-reviewed research in to CFS/ME and is actively encouraged by the CMRC. This
includes respectful debate and objective, constructive criticism in order to encourage critical
thinking. Channels for ‘good’ scientific debate include writing letters to journals, asking questions,
using established legal channels.
Membership of the CMRC does not prevent any member charity or organisation from pursuing its
own aims and objectives as laid out in its founding documents.
Thanks, but that version dated 25 Feb 2013, is one of the versions I had uploaded to the thread, which is here:
http://forums.phoenixrising.me/index.php?threads/trial-by-error-continued-cmrc-to-virology-blog-“f-k-off-”.51340/page-3#post-848160
What I was looking for is a version of the Charter that has the wording in bold, brown, below:
It had been quoted in a PR thread by someone else a couple of years or so ago but I haven't been able to find a copy of a version with that wording still online.
Version: 23 February 2013
3.1.3. Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.
-------------------------
Version: Nov 2013
3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research.
-------------------------
Version: ?
3.1.3. All members must not take part in the harassment of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research. This does not prevent engagement in appropriate scientific debate.
-------------------------
https://www.actionforme.org.uk/reso...k-cfs/me-research-collaborative/cmrc-charter/
Current Version: August 2016
3.2 Membership Requirements
Good scientific debate promotes and drives the highest quality of basic and applied evidencedbased
and peer-reviewed research in to CFS/ME and is actively encouraged by the CMRC. This
includes respectful debate and objective, constructive criticism in order to encourage critical
thinking. Channels for ‘good’ scientific debate include writing letters to journals, asking questions,
using established legal channels.
Membership of the CMRC does not prevent any member charity or organisation from pursuing its
own aims and objectives as laid out in its founding documents.
Political interns and law interns also work grueling hours and it does separate out people of extremely efficient energy production and those who are average and below. Same applies to athletes. Since considering issues around being ill with ME I have come to see capacity to produce and use energy as more important than IQ in succeeding in life (although IQ was already debatable as the preeminent quality of success).*
*Success as popularly understood
*Success as popularly understood
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Yes, and this is where biomedical research can become muddied by people promoting the P/S view. Epigenetics (biological) will be used to meld the mind-body nonscience. We do not yet always know why genes express the way they do but the psychosocials will insert their ideology as the answer.
I am at the limit of my science knowledge here so please correct any inaccuracies in my understanding.
I am at the limit of my science knowledge here so please correct any inaccuracies in my understanding.
Seems like every alternative or co-existing physical diagnosis pwME commonly get given further down the line (hypermobility/ EDS, IBS, etc) is now being targeted as well (see also Esther Crawley's MUPPets talk), just in case we thought we could escape the psychiatric label and get proper treatment for at least some of our problems . This has to be policy driven.
'Okay, yes, you might have abnormal collagen, and yes it does cause all these physical problems, but that's only because soft collagen works that way on the mind.'
This seems to be superseding the previous UK fib, which was that POTS and EDS are so terribly rare that don't need checking for.
I personally know a psychologist who diagnoses MUS all the time. He does it for insurance companies. He believes in it. Last time I spoke to him he still followed the POTs, EDS, etc, vanishly rare principle. He has no medical qualifications and just laps this stuff up. And yes, I have gently tried explaining, but his entire world view is built on psychologising everything.
Why don't they just admit they can't do science, take up medieval astrology be done with it?
Sorry, my mistake - medieval astrology is actually quite hard.
'Okay, yes, you might have abnormal collagen, and yes it does cause all these physical problems, but that's only because soft collagen works that way on the mind.'
This seems to be superseding the previous UK fib, which was that POTS and EDS are so terribly rare that don't need checking for.
I personally know a psychologist who diagnoses MUS all the time. He does it for insurance companies. He believes in it. Last time I spoke to him he still followed the POTs, EDS, etc, vanishly rare principle. He has no medical qualifications and just laps this stuff up. And yes, I have gently tried explaining, but his entire world view is built on psychologising everything.
Why don't they just admit they can't do science, take up medieval astrology be done with it?
Sorry, my mistake - medieval astrology is actually quite hard.
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I think having no qualifications in medical science yet getting to treat ill people must be a real ego trip. Seriously, you get to play doctor without the gruelling training. You get status, and a good salary, and you can't cure anyone, so there's a permanent patient population to exploit. To hell with the patients. All I see is an ambitious population of psychs and others with high ambitions for themselves and their field. We are just the fodder for their dreams of greatness.
And of course, their delusions are perfectly in line with a political and corporate climate where disability denial (and the financial benefits of disability denial) are endemic.
And of course, their delusions are perfectly in line with a political and corporate climate where disability denial (and the financial benefits of disability denial) are endemic.
This whole thing is going to make the read code system for medical records even more useless and inaccurate than it already is if all that's going to be listed is MUS.
http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/MUS-Project-Implementation-Report.pdf
"
The role of the GP is significant in the management of patients with MUS and
continuity with regular review is crucial as patients will continue to seek investigation
and reassurance wherever they can. The MUS Whole Systems approach document
identified that coding using the read code 16h (unexplained symptoms continue)
would support a GP approach and provide a systems based approach for continuity
within the GP practice."
"
MUS is not a discrete syndrome or presentation but a shorthand for people seeking
help with mainly physical symptoms that may be exacerbated/
maintained by stress and that the GP cannot explain. They vary in severity and in severe cases
psychiatric diagnoses may be appropriate."
http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/MUS-Project-Implementation-Report.pdf
"
The role of the GP is significant in the management of patients with MUS and
continuity with regular review is crucial as patients will continue to seek investigation
and reassurance wherever they can. The MUS Whole Systems approach document
identified that coding using the read code 16h (unexplained symptoms continue)
would support a GP approach and provide a systems based approach for continuity
within the GP practice."
"
MUS is not a discrete syndrome or presentation but a shorthand for people seeking
help with mainly physical symptoms that may be exacerbated/
maintained by stress and that the GP cannot explain. They vary in severity and in severe cases
psychiatric diagnoses may be appropriate."
I'm going to do the same. Even though I've started having abnormal blood results I will not be going to them about anything related to my tiredness and weakness. I have such a nice GP but I'm cautious due to the degrading treatment I've experienced in the NHS plus this new scheme they are rolling out. It's very triggering to know that this is how they are treating vulnerable people. I wish I could do more but I feel like it's too late..
The worst thing is that the majority of people with MUS later find a physiological cause for their symptoms. This scheme will crumble at some point. I just worry about all the people that will be harmed in the process.
The worst thing is that the majority of people with MUS later find a physiological cause for their symptoms. This scheme will crumble at some point. I just worry about all the people that will be harmed in the process.
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The Read Codes (CTV3) terminology system in use in UK NHS primary care is being retired.
By April 2018, SNOMED CT has to be adopted for primary care use and CTV3 will be withdrawn.
SNOMED CT is scheduled to be adopted across all NHS settings by 2020.
Additional information (from our proposal for ICD-11):
4.2 Classificatory revisions to SNOMED CT and Clinical Terms version 3 (CTV3): Prior to July 2015, SNOMED CT International Edition and its National Extensions had Chronic fatigue syndrome (with Myalgic encephalomyelitis and several related and historical terms as Synonyms terms) classified under two parent disorder classes: Mental disorder; and Multisystem disorder.
In March 2015, Health and Social Care Information Centre (now NHS Digital) confirmed that the owners of SNOMED CT (IHTSDO) had reviewed the relationship between the entry for SCTID: 52702003 Chronic fatigue syndrome and its Mental disorder parent and had retired the Mental disorder parent [6].
Since the July 2015 release of SNOMED CT International Edition, Chronic fatigue syndrome is classified under the single parent, SCTID: 281867008 Multisystem disorder.This revision was incorporated into all subsequent releases of the various SNOMED CT National Extensions.
The Clinical Terms version 3 (CTV3) primary care clinical terminology product (aka: the UK Read Codes v3) also had Chronic fatigue syndrome classified under two parent disorder classes: as a sub class of Neurasthenia, under Mental health disorders; and as a sub class of Neurological disorders. The April 2016 release for CTV3 also retired the Mental health disorder parent for Chronic fatigue syndrome to reflect the revised classification in the SNOMED CT International Edition and its Extensions [7].
6 Correspondence: Health and Social Care Information Centre (now NHS Digital), FORWARD-ME March 20, 2015. http://www.forward-me.org.uk/Reports/SNOMED.pdf [Accessed: March 16, 2017]
7 Correspondence: UK Terminology Centre (UKTC) (now NHS Digital), Suzy Chapman, November 20, 2015.
By April 2018, SNOMED CT has to be adopted for primary care use and CTV3 will be withdrawn.
SNOMED CT is scheduled to be adopted across all NHS settings by 2020.
Additional information (from our proposal for ICD-11):
4.2 Classificatory revisions to SNOMED CT and Clinical Terms version 3 (CTV3): Prior to July 2015, SNOMED CT International Edition and its National Extensions had Chronic fatigue syndrome (with Myalgic encephalomyelitis and several related and historical terms as Synonyms terms) classified under two parent disorder classes: Mental disorder; and Multisystem disorder.
In March 2015, Health and Social Care Information Centre (now NHS Digital) confirmed that the owners of SNOMED CT (IHTSDO) had reviewed the relationship between the entry for SCTID: 52702003 Chronic fatigue syndrome and its Mental disorder parent and had retired the Mental disorder parent [6].
Since the July 2015 release of SNOMED CT International Edition, Chronic fatigue syndrome is classified under the single parent, SCTID: 281867008 Multisystem disorder.This revision was incorporated into all subsequent releases of the various SNOMED CT National Extensions.
The Clinical Terms version 3 (CTV3) primary care clinical terminology product (aka: the UK Read Codes v3) also had Chronic fatigue syndrome classified under two parent disorder classes: as a sub class of Neurasthenia, under Mental health disorders; and as a sub class of Neurological disorders. The April 2016 release for CTV3 also retired the Mental health disorder parent for Chronic fatigue syndrome to reflect the revised classification in the SNOMED CT International Edition and its Extensions [7].
6 Correspondence: Health and Social Care Information Centre (now NHS Digital), FORWARD-ME March 20, 2015. http://www.forward-me.org.uk/Reports/SNOMED.pdf [Accessed: March 16, 2017]
7 Correspondence: UK Terminology Centre (UKTC) (now NHS Digital), Suzy Chapman, November 20, 2015.