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MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

Messages
32
So to make it clear, the IAPT programme does not appear to now regard fibromyalgia as a 'MUS' condition but instead as a LTC Long Term (chronic pain) condition. Therefore, as far as I'm aware, it is not coded under IAPT as ICD-10 F45.0 'somatization disorder'.

The IAPT LTC/MUS extended data set pilot technical output specification categorises chronic pain including Fibromyalgia as a LTC. However:

In the recently published IAPT-LTC Full implementation guidance 2018, "Medically unexplained symptoms" are defined as:

"Persistent and distressing bodily symptoms characterised by functional disability that cannot wholly be explained by a known physical pathological cause; psychological processes are often involved in the presentation of MUS. Examples include: chronic fatigue syndrome, chronic pain and irritable bowel syndrome" (p. 37)

p.30:
"Main mental health problem (primary problem descriptor)....

"Chronic pain (in the context of depression/anxiety disorders)*"

" * Denotes a mental health problem that is new to the IAPT programme as it is being introduced in the context of IAPT-LTC services."


For chronic pain (in context of depression/anxiety disorders):

"Depression symptom measure": PHQ-9
"Recommended measure for anxiety symptoms or MUS": GAD-7

LTCs are not listed with Mental health 'context' (Eg., no COPD/CVD/diabetes/other LTC in context of depression/anxiety) in Table 6: Outcome measures by problem descriptor for IAPT-LTC services (p. 30).

Note: Chronic pain does not include depression/anxiety 'context' at p. 37 where it is cited as example of MUS.

Fibromyalgia is not explicitly mentioned anywhere in the guidance. Examples given of LTCs are "cardiovascular disease, chronic obstructive pulmonary disease, diabetes and musculoskeletal disorders."

https://www.rcpsych.ac.uk/workinpsy...arepathways/improvingaccess.aspx?theme=mobile

The July 2014 IAPT MUS Positive Practice Guide includes Fibromyalgia in list of conditions in which "patients should be given a specific diagnosis of a syndrome which describes their central symptom(s) without inferring that the aetiology is psychological" and it is recommended the term 'MUS' not be used when engaging with the patient. This document is currently available on the UEA website, which provides a number of IAPT training courses.

Given the above, I would not assume that Fibromyalgia will not be regarded as MUS in IAPT-LTC roll out.

Edited for clarity.
 
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lilpink

Senior Member
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In the recently published IAPT-LTC Full implementation guidance 2018, "Medically unexplained symptoms" are defined as:

"Persistent and distressing bodily symptoms characterised by functional disability that cannot wholly be explained by a known physical pathological cause; psychological processes are often involved in the presentation of MUS. Examples include: chronic fatigue syndrome, chronic pain and irritable bowel syndrome" (p. 37)
etc


Thanks very much for that helpful addition, a good reason for saying "as far as I'm aware" in my correction # 703


They seem to deliberately make everything as clear as mud, - is it, isn't it, who knows?


Perhaps someone could do a FOI request to find out exactly how fibromyalgia is being coded under IAPT - i.e. what the

'problem descriptor' ICD code is for fibromyalgia?
 
Messages
32
Once patients have this code on their medical record they will be regarded as somatizers and resource wasters for whatever symptoms they present to any doctor with.

@lilpink
Is it self-evident the enjoinment to record MUS patients with F45.0 for pseudonymised national reporting will directly impact coding/terms on their medical record?

Further indication chronic pain including Fibromyalgia recorded as a LTC for purposes of IAPT LTC Integrated Early Implementer data set:

Integrated IAPT Data Handbook, Version 4 (March 2017) see p. 3:

https://www.healthylondon.org/wp-content/uploads/2017/11/Integrated-IAPT-Data-Handbook.pdf

p. 3 "Primarily Medically unexplained" symptoms includes "Chronic Fatigue Syndromes" option. Plural and capitalisation as read.
 

lilpink

Senior Member
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The CCGs also appear to record IAPT information.

This FOI request to NHS Bristol CCG - FOI 1516 144 Summary Issue: IAPT This ... - NHS Bristol CCG - appears to indicate that the ‘Problem Descriptor’ codes are recorded for some patients on their system and that if no diagnosis is available from a suitably qualified professional then a default of general anxiety or depression is used:

“As of 1 April 2015 Bristol [CCG] began recording ICD-10 Problem Descriptor codes for individual service users, only in cases where there was a definitive diagnosis available as part of the referral, or where the involved professional was suitably qualified to make that judgement. Otherwise, more general anxiety/depression coding is applied.”

This raises several questions:

  • According to the IAPT handbook, GP diagnoses are disregarded by the IAPT in seeking a ‘problem descriptor’, so the first part of this answer – ‘only in cases where there was a definitive diagnosis available as part of the referral’- doesn’t appear to make much sense. Does the CCG mean that the problem descriptor is only added when the IAPT programme happens to agree (either following assessment or on completion of the programme?) with the referring clinician’s diagnosis? This needs clarification.
  • The second part of the answer - ‘or where the involved professional was suitably qualified to make that judgement’ – raises this question - which professionals on the IAPT programme are deemed ‘suitably qualified to make that judgement’? The following staff are part of the IAPT structure – Low Intensity therapists – Psychological Wellbeing Practitioners at step 2, high intensity therapists at step 3 (http://slideplayer.com/slide/10156959/ ) and at the higher levels or ‘steps’ may include consultant clinical psychologists or psychiatrists. So who makes the coding decision? It’s worth bearing in mind this document by the British Psychological Society - Guidelines on the use of Electronic Health Records - British ... – that discusses concerns regarding non-medically-qualified practitioners adding diagnoses or diagnostic descriptions to a patient’s record.
  • How can it be in order to record a coding of general anxiety or depression by default when no qualified professional has made a diagnosis?
The following document, again for Bristol, - Records Management Policy - South Gloucestershire CCG would seem to suggest that the CCG holds patient health records for all specialties but excluding GP records.
 
Messages
32
@lilpink thanks for this.

Yes, it isn't clear from the FOI exactly what purpose of recording Bristol is referring to is it.

Term 'provisional diagnosis' has been superceded by 'problem descriptor' at least as far as the data set is concerned. In 'Psychological Therapies: Annual Report on the use of IAPT services - England' (2015-16), the term 'IAPT-relevant problem' is repeatedly used:

"NICE recommend that particular therapies are given to treat specific IAPT-relevant problems (also known as ‘problem descriptor’ in the data)."

PDF: https://files.digital.nhs.uk/pdf/1/0/psyc-ther-ann-rep-2015-16_v2.pdf

___

From 'Psychological Therapies: Annual report on the use of IAPT services England, further analyses' (2016-17):

"Problem descriptor

"This describes the specific problem being assessed by the IAPT service for a given referral (for example, Obsessive Compulsive Disorder). The terminology was changed from ‘provisional diagnosis’ as it was felt that a formal diagnosis cannot always be made at initial contact with a patient and that this sometimes only becomes apparent over the course of several appointments. For this reason, the problem descriptor can be updated in each submission. In the analysis of outcomes, the problem descriptor used is the last recorded one."


https://digital.nhs.uk/data-and-inf...-services-england-further-analyses-on-2016-17

___

From the draft IAPT Manual (2017). The IAPT Manual is awaiting publication:

https://www.rcpsych.ac.uk/workinpsy...arepathways/improvingaccess.aspx?theme=mobile

"5.1.3 Establishing the appropriate problem descriptor

"NICE guidance is based on the ICD-10. Different psychological treatment approaches are
recommended for different types of problem as delineated in the ICD-10 framework. For this reason, it is essential that assessors identify and record a problem descriptor for the main problem that the clinician and patient have agreed they would like to work on. It is recognised that patients may have multiple problems. The IAPT MDS [minimum data set] has several problem descriptor fields that can be used in such instances, it is essential that the clinician identifies the ICD-10 code that characterises the leading problem. If this is not achieved, the person may be offered the incorrect treatment and the most appropriate outcome measures may not be
used. This will hamper the clinician’s attempt to help the person overcome their problems."


Regarding defining problem descriptor:

p. 47: "... assessors in IAPT services are encouraged to work with patients to describe accurately the problems that they would like their treatment to focus on and to give these the appropriate problem descriptor. Identification of the appropriate problem descriptor varies across services, but those with higher rates of problem descriptor identification achieve better outcomes."

Appendix C to the 2011 IAPT Handbook v. 2. 0.1 contains an algorithm for identifying descriptors which I've attached below for ease of reference. This does not contain MUS descriptors.

The 2013/14 'Psychological Therapies, Annual Report on the use of IAPT services' mildly reproved lack of provisional diagnosis reporting:

"In 2013/14 provisional diagnosis was recorded for 46% (513,346) of new referrals received by IAPT services. It is to be expected that some referrals may not have had a diagnosis at the point of referral as the service user may not have seen a therapist at this point. Recently we undertook a consultation exercise[8], on IAPT reporting, which included a question on the reasons for a lack of completion of the provisional diagnosis field. A common reason reported was that clinicians may not feel adequately trained or qualified to provide a diagnosis."

"Referrals with a provisional diagnosis of any type recorded had a combined recovery rate of 46% (95,583 referrals); this was higher than for referrals without a provisional diagnosis recorded, which had a recovery rate of 43% (48,250 referrals)"

From the above, I arrive at:

1. Not all IAPT service providers have historically identifed problem descriptors for patients who are to undergo a course of treatment;

2. Where problem descriptors are identified, this is for the purpose of informing clinical direction and identifying appropriate NICE guideline(s) for the IAPT course of treatment and appropriate outcome measures, and for national pseudonymised reporting. Problem descriptors may or may not be informed by referral diagnosis;

3. IAPT services are enjoined to identify the ICD-10 code that corresponds with the problem descriptor lit upon, for NICE guideline and outcome measure identification, and pseudonymised national reporting purposes;

4. ICD-10 coding may or may not affect coding/terms on patient Electronic Health Records:

I haven't encountered any document (to date) that explicitly indicates ICD-10 equivalent coding or clinical terms should or will be entered onto patient Electronic Health Records as a direct result of undergoing referral to IAPT services. This isn't to say that this may not occur as preamble to or other result of referral, such as correspondence or case conferencing with primary care physician. Variability across providers and that an increasing number of IAPT services are co-located in primary care settings add additional variables.

Talking Sense on confidentiality:

http://www.talkingsense.org/about-us/confidentiality/

I recommend this thread initiated by a PWP candidate on 'diagnosing':

http://www.clinpsy.org.uk/forum/viewtopic.php?f=27&t=14240

___

Re 'provisional diagnosis' and its successor terms, it's also worth noting that the BPS 'Guidelines on the use of Electronic Health Records' (Oct 2011) (see @lilpink previous post ) in reference to concerns over competence in diagnosing, states:

"The issue of entering psychiatric diagnosis in a record is sometimes dealt with by ‘workarounds’, such as requiring the non-psychiatrist to enter an ‘interim’ or otherwise tentative diagnosis. It is the view of the Society that while such workarounds may satisfy Trust requirements, they do not avoid the issue of competence to make such diagnoses and are counterproductive because they constitute a ‘solution’ that is illusory. In some mental health services registered psychologists provide provisional diagnosis based on relevant ICD-10 coding. Provisional diagnoses record patterns of symptoms and do not replace the client-centred assessment required to formulate a treatment plan."

The last sentence is found near verbatim in the earlier publication IAPT Data Handbook v. 2 (June 2011).

ETA: Attachment Appendix C to IAPT Handbook v. 2.0.1 (2011)
 

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lilpink

Senior Member
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Dadgummed Shango - Thanks for all that.

The Talking Sense link is particularly useful - http://www.talkingsense.org/about-us/confidentiality/ .

It seems then that patients, at least in some services, may be able to determine where their information ends up. It is unclear as to whether the problem descriptor codes would go directly to electronic patient records where many doctors could potentially see them, but another route to consider is that the ‘problem descriptor’ or ‘somatization disorder’ label is returned to the patient’s GP. As I understand it, GPs record the information that they receive from specialists etc on the GP patient record and they can then use it to add to information going out with other referrals. It is a concern then that what started out as being described as a ‘provisional diagnosis’ by IAPT practitioners is now referred to as a ‘problem descriptor’. Are GPs receiving information from the IAPT service that their patient’s ‘problem descriptor’ is ICD-10 F45.0 or ‘somatization disorder’? How would they know that this is not a definitive diagnosis? Are they being told NOT to record this information if they receive it?

NB I will be happy to issue a correction to the information I gave in earlier posts if it can be determined that there is no route via which the ‘problem descriptor’ of ICD-10 F45.0 OR ‘somatization disorder’ can reach the patient’s electronic record that clinical staff can access.

Although in the past the IAPT practitioners were failing to record ‘problem descriptors’ for a proportion of IAPT patients, the more recent emphasis has been on urging all practitioners to record an ICD-10 code/ ‘problem descriptor’ for all patients. It has been stressed to them how important this is. So it is highly unlikely now that the problem descriptor isn’t being recorded.

Putting aside the matter of the individual patient records, the inclusion of the ‘problem descriptor’ in the IAPT data set remains a huge problem for patients. I repeat, that from the data in the Bermingham et al paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2939455/ it follows that more than 90% of MUS IAPT patients are being coded with a mental health disorder that they do not have, and this has been going on for the past year or more. This data will likely be used to inform health policy and directives and may be used for research purposes and potentially to help inform changes to NICE guidelines. Patients are therefore, in my opinion, at risk more generally via this route.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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@lilpink and others

Thank you for these recent IAPT posts. I will catch up with them later this week.


In the meantime:

Diane O'Leary has had an article published in The American Journal of Bioethics, 6 Apr 2018, on the subject of MUS.

The following statement by Dr O'Leary within this article needs correcting:

"This controversy has left the World Health Organization
in a state of uncertainty about the construct that
should fill the slot for the new edition of the international
diagnostic coding manual, ICD-11, due out in 2018."

and

"With both sets of issues we find ourselves at a crucial
historical juncture. Future management of MUS will be
dictated by the construct selected to replace somatoform
disorders in the new edition of the global diagnostic coding
manual, ICD-11."



As documented on my site, across several reports:

By February 2012, Bodily distress disorder (BDD) had already been added to the ICD-11 draft. At that point the platform was still known as the "Alpha Draft."

By July 2012, three severity specifiers had been added, plus a definition.

By 2014, the definition inserted for BDD characterized the proposed construct as being close to DSM-5's SSD.

As did progress papers, published in 2012 and 2016, by the S3DWG sub working group that has had responsibility for making recommendations for the revision of ICD-10's Somatoform disorders for the core edition [1][2].



There has never been any other potential construct under consideration by ICD Revision for the core ICD-11 than BDD, since BDD was first added to the Beta draft, in early 2012.


In July 2017, BDD was added to SNOMED CT by the ICD-11 to SNOMED Mapping Project Team as an exact match for ICD-11's BDD.

And it is BDD that appears in all the frozen releases. Including the release frozen on April 4 for purposes of Quality Assurance, in preparation for the release of an initial version of ICD-11 this June.

There is no "state of uncertainty" for the core ICD-11 version.

Statements like the one I have quoted above serve only to generate confusion. One has to question why Dr O'Leary seeks to present a "state of uncertainty."

BDD has "filled the slot" since February 2012.


References:

1 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. doi: 10.3109/09540261.2012.741063. [PMID: 23244611]

2 Gureje O, Reed GM. Bodily distress disorder in ICD-11: problems and prospects. World Psychiatry. 2016 Oct;15(3):291-292. doi: 10.1002/wps.20353. [PMID: 27717252]
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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"With both sets of issues we find ourselves at a crucial
historical juncture. Future management of MUS will be
dictated by the construct selected to replace somatoform
disorders in the new edition of the global diagnostic coding
manual, ICD-11.
Bioethical contributions to that decision-
making process would greatly improve the quality of
patient care for generations to come."


Again, there has been no consideration of any other construct apart from BDD for the core ICD-11 edition and that has been the case since February 2012.

But, in Dr O'Leary's "briefing document" for Forward-ME (the initial O'Leary document, not the second version that ME Research UK linked to around April 10, after pulling the initial document), she states:

"The primary care diagnosis of BSS will have far greater power in determining how ME patients are diagnosed and treated than any diagnosis listed in the general ICD."

A curious lack of consistency for an academic.

And for the U.S. where O'Leary lives and works, it is the DSM-5, in any case, that dominates psychiatric diagnosis - not ICD.
 
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Messages
32
@lilpink We share the same substantive concerns.

I'm aware of two dedicated IAPT clinical systems: IAPTus and PCMIS.

It's not clear whether some IAPT providers use other electronic clinical systems, particularly where services are co-located. (See Mayden IAPTus slideshow below re migration to IAPTus.)

Both IAPTus and PCMIS have some interoperability relevant to the preceding as follows:

1.With NHS Spine Mini Service (IAPTus & PCMIS): https://digital.nhs.uk/services/spine/spine-mini-service-simplified-ways-to-connect-to-spine

Spjne Mini Service allows read-only connections. No clinical data is held on the Personal Demographics Service.

It does not currently provide for access to the Summary Care Record, however:

"In the future we may develop the SMSP to let users connect with other Spine services, such as Summary Care Records or the Electronic Prescription Service."

As stated, SMPS is read only.

Including additional information beyond minimum on the SCR requires explicit patient consent.

https://digital.nhs.uk/services/summary-care-records-scr/additional-information-in-scr

Personal Demographics Service data:

https://digital.nhs.uk/services/demographics/personal-demographics-service-fair-processing


2. Partner Services Integration as an optional extra feature (IAPTus):

" Your patient management system should enable you to work and share data across partner services.

"Extend the use of iaptus to the organisations you work with which also require routine data capture, such as debt counsellors, substance misuse, forced migration trauma, primary care liaison and employment services."


Primary care liaison may translate as electronic GP messaging:

Mayden IAPTus 2013 slideshow:

http://slideplayer.com/slide/4302285/

"8 Communicating with GPs Reducing the stamp bill
9 Communicating with GPs is important CCG’s are now upon us
GP’s are want faster communication
150,000 letters created per month
Over 50,000 to GP’s 50p per letter = £25,000 per month
No guarantee that the GP got it
10 Making it easy"


IAPTus: https://iaptus.co.uk/
PC-MIS: https://www.york.ac.uk/healthsciences/pc-mis/index.html

ETA: I've emailed IAPTus to see if they're willing to provide any info on Partner Services Integration, particularly wrt to primary care liaison. I'll post anything useful if I receive a response.
 
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Messages
32
I received a response to my query about 'primary care liaison' integration, stating that IAPTus is currently integrated with 'electronic messaging routes', such as:
-Medical Interoperability Gateway
-Docman Hub

They are planning other partner services integration.

Partner services integration page with limited info is here:
https://iaptus.co.uk/features/partner-services/

As an aside, IAPTus also integrates with online CBT programmes such as SilverCloud, with two-way flow of information for referral and outcomes via Mayden middleware Prism.

1 February 2017 IAPTus post 'Digitising Care Pathways' skims some of the digital features IAPTus currently offers (specifics found under the Features submenu).
https://iaptus.co.uk/2017/02/digitising-care-pathways/
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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I fear that there is a bit of an agenda unfolding with this - Forward ME have dismissed Suzy Chapman , there is a paper published today placing CFS in MUS, and IAPT is rolling out....

But what is this agenda and why would Forward ME push it? I can't see why Forward ME would want to promote ME as MUS when they've fought against this so far. It doesn't make sense.

So I doubt very much Forward ME has a pro-MUS/IAPT agenda. It seems more likely it's a cock-up. We can't accuse anyone or imply anyone has such an agenda without evidence of malice.

All we've got so far is one person's account of what's going on behind the scenes, which isn't enough to convince me of anything. Until we see the Countess of Mar's letter, or a response from Forward ME, this is all just gossip.
 
Messages
67
I don't think Forward ME are pushing it - perhaps they feel the best means of addressing things is not to engage further? It may be political manoeuvering
It just seems a very dangerous game

That's my impression too. The Countess of Mar is a politician, so you'd expect politics. Obviously, Forward ME tries to include everyone--which is possibly the right approach, since it effectively disproves the 'militant' narrative (everyone is working together, rather than against each other). I can also understand why IiME wasn't keen to stay.

But looking at the Countess' letter on the other forum, it appears IiME ignored her question about whether they wanted to leave. They couldn't send representatives often anyway, so it's fair to assume the rest of the group just figured nothing had changed. They're not mind-readers, after all.

It's unfortunate that they've sacked Suzy, but it doesn't mean something nefarious is going on. They may have disagreed with her approach rather than her message--and remember, the Countess of Mar is looking at this through a political lens.

I'm not sure what O'Leary is playing at, but it seems she's made a cock-up rather than that she's welcoming a label that will weaken efforts to get proper treatment for ME patients. It would be better to ask O'Leary and wait for her response than to endlessly and aggressively speculate that the sky is falling down.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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But what is this agenda and why would Forward ME push it? I can't see why Forward ME would want to promote ME as MUS when they've fought against this so far. It doesn't make sense.

So I doubt very much Forward ME has a pro-MUS/IAPT agenda. It seems more likely it's a cock-up. We can't accuse anyone or imply anyone has such an agenda without evidence of malice.

All we've got so far is one person's account of what's going on behind the scenes, which isn't enough to convince me of anything. Until we see the Countess of Mar's letter, or a response from Forward ME, this is all just gossip.


I don't have permission to publish the letter of dismissal that was sent to me by the Countess of Mar. So unless the Countess of Mar elects to make her communication to me public, then you won't see it.

Or are you talking about historical correspondence between the Countess of Mar and Invest in ME from 2014?

Or some other letter or response?
 
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