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

[lilpink]

Thanks so much, Dx Revision Watch.

So have I got this straight? Please correct me if I’m wrong.


For UK Primary Care GP records:


Under the new SNOMED CT coding system –

Anyone who has already been coded with 16H will now likely have a coding of either

SCTID: 16190400 ‘unexplained symptoms continue (finding)’ OR

SCTID: 887761000000101 ‘medically unexplained symptoms (finding)’ OR

possibly some other coding corresponding to ‘unexplained physical symptoms (assessment scale)’ or ‘unexplained physical symptoms (observable entity) ???


And in relation to the same Primary Care GP records for those diagnosed with ME/CFS–

ME/CFS used to be coded as both a ‘multisystem disorder’ and a ‘mental health disorder’, but thanks to the Countess of Mar’s intervention the ‘mental health disorder’ part was dropped from July 2015. But under the changes to SNOMED in 2017 the ‘multisystem disorder’ category was retired so ME/CFS has been in a kind of coding 'no man’s land' since then, except if all goes to plan, thanks to Forward-ME, it should be entered under the SNOMED CT ‘Disorder of Nervous System’ SCTID: 52702003 code from July onwards, consolidating the relationship with the previous ICD-10 G93.3 code that the Government appears to insist that it is adhering to???

And Post-viral fatigue syndrome is listed elsewhere under Post-infectious disorder, sub-parent of Post-viral disorder.


Is that all correct?


Fingers crossed that new code comes to fruition in July.

 

[lilpink]

@Dx Revision Watch

Quick question -


Does this all apply to patients in Wales, Scotland and Northern Ireland too?

 

[lilpink]

The question has been raised as to whether the ICD-10 F45.0 somatization disorder code definitely ends up in the patient's clinical record when a ME/CFS or 'MUS' patient opts to attend IAPT talking therapy sessions.

At first the coding allocated by the IAPT programme was described as a ‘provisional diagnosis’ - see

The IAPT Data Handbook - Healthcare Today UK - pages 17 and 18.

It is clear from this document that the code forms part of the data set that ends up in the patient's electronic clinical record, ( eg from http://iaptsheffield.shsc.nhs.uk/privacy/- information is kept on the Trust computer system and from - https://www.leedscommunityhealthcare.nhs.uk/iapt/online-referral-and-bookings-terms-and-conditions-/ is shared with the patient's GP ) Any alternative diagnosis offered by the GP at referral or by a self-referring patient is discarded in favour of the one actively determined by the IAPT practitioner.


The coding also forms part of a IAPT data set that is used for the purposes outlined on page 10 of the handbook.

Note particularly points 5 to 8 here that indicate that data could be used to back up policy and presumably also potentially inform future NICE guidelines.


Since then the term ‘provisional diagnosis’ has been replaced by ‘problem descriptor’ – Improving Access to Psychological Therapies Data Set v1.5 User ... see page 17. Perhaps this was because the ‘Psychological Wellbeing Practitioners’ (therapists) being asked to code patients were uneasy about giving a 'diagnosis' without proper training – (as exemplified in comments on this site - http://www.clinpsy.org.uk/forum/viewtopic.php?f=27&t=14240 ) , or perhaps because the British Psychological Society had issues with non-doctors/psychologists/therapists making diagnoses that were being added to the electronic record - Guidelines on the use of Electronic Health Records - British ... see page 7.


It is impossible to know, without insider knowledge, exactly how this coding will be or is being utilized and how far it could reach and what damage it could do within the patient’s individual electronic record, or from the research and policy perspective. But what we do know is that for some time it has been the intention of the BPS lobby to code patients to prevent them accessing investigations and treatment by flagging up their 'somatization'/'MUS' to other health professionals on the system by using some sort of clinical code Medically Unexplained Symptoms (MUS) - London Health Programmes - ‘16H’ is the code suggested here. (It seems unlikely that they would be employing the ‘16H’ code now, unless GPs are still using that code.)

The LTC/MUS arm of the IAPT programme is intended to bring about savings to the NHS budget that will pay for the whole IAPT programme by the reductions in biomedical investigations and treatment for those LTC and MUS patients who agree to receive therapy. This forms the economic basis for the huge IAPT endeavour.

If patients agree with their GP or consultant that they have some medically unexplained symptoms, or ME/CFS, or whatever, and agree that they'll give psychological therapies a go, then they can either self-refer or be referred by their doctors to one of the many differently named local talking therapies IAPT services, - (eg for Canterbury and Coastal area -Talking Therapy Providers in Canterbury and Coastal ). That service will code the patient with ICD-10 F45.0 'somatization disorder' for complaints such as IBS, fibromyalgia and ME/CFS. There is no doubt about this, no ambiguity, if you are a 'MUS' patient receiving IAPT talking therapy then you will be coded with 'somatization disorder' on the IAPT programme. IAPT practitioners and operatives are told to ensure that an ICD code is applied to all IAPT patients.

It would seem that not all IAPT services are providing therapies for 'MUS' at present, but the LTC (long term conditions) /MUS arm continues to be rolled out across the country and it’s not easy to keep pace with which services/areas have been added. Patients should be very wary if IAPT is suggested to them for symptoms that their doctor doesn't have a diagnosis for, or presumably for any conditions from the long 'MUS' list. egs:

ME/CFS, fibromyalgia, irritable bowel syndrome, non-ulcer dyspepsia, non-cardiac chest pain, chronic pelvic pain including dysmennorhoea, functional neurological symptoms including dizziness, headache etc.

 

[lilpink]

What is IAPT?

IAPT - is the Improving Access to Psychological Therapy programme. This link http://www.philosophyforlife.org/david-clark-on-improving-access-for-psychological-therapy-iapt/ gives an overview from the perspective of the man behind it, Oxford Professor David Clark - http://www.magd.ox.ac.uk/member-of-staff/david-clark/ .

It has now turned into a massive psychological therapy and data collection machine - http://slideplayer.com/slide/10485790/ . From page 6 - the IAPT dataset is being merged with MHSDS in April 2018. The MHSDS is the Mental Health Services Data Set - https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/mental-health-services-data-set . Scroll down the page to see the uses to which this data set is put.

Then remember that the ICD-10 codes used in IAPT are not based on diagnoses by trained doctors or psychiatrists, they have been arrived at by IAPT therapists/practitioners, possibly including PWPs - 'Psychological Wellbeing Practitioners' - who deliver the low intensity IAPT interventions after a grand total of just 45 days training.

 

[Countrygirl]

http://www.forwardme.org.uk/Reports/Communication from the Countess of Mar regardng BSS.pdf

Our current understanding is that BSS would be set up in such a way that it does not allow doctors to conclude that ME is a biological disease. Instead, it ensures that ME patients will be captured with a psychiatric diagnosis.  If BSS is included in the next revision of the ICD, this would override any guidance, including the UK guideline published by the National Institute of Health and Care Excellence, that recognises ME as a biological disease. This could have serious implications for treatment and symptom management.  We understand that the news about BSS is a worrying development, ...................

 

[Dx Revision Watch]

Thanks so much, Dx Revision Watch.

So have I got this straight? Please correct me if I’m wrong.

For UK Primary Care GP records:

Under the new SNOMED CT coding system –

Anyone who has already been coded with 16H will now likely have a coding of either

SCTID: 16190400 ‘unexplained symptoms continue (finding)’ OR

SCTID: 887761000000101 ‘medically unexplained symptoms (finding)’ OR

possibly some other coding corresponding to ‘unexplained physical symptoms (assessment scale)’ or ‘unexplained physical symptoms (observable entity) ???

I've just checked the READ CTV3 to SNOMED CT MAPPING LOOKUP (APRIL 2018) tool.

A search for CTv3 term "Unexplained symptoms continue" returns the following map details:

CTV3 ConceptID: .16H.
CTV3 TermID: YaYS5
CTV3 Term30: Unexplained symptoms continue
SNOMED CT ConceptID: 161904006
SNOMED CT DescriptionID: 252325019
SNOMED CT Term: Unexplained symptoms continue
SNOMED CT ConceptStatus: Active

(I have edited my previous post as I see that I had not caught the "6" on the end of the SCTID code, when copying and pasting from the SNOMED CT UK Edition Browser.)

So this appears to be the current map for 16H (CTV3 TermID: YaYS5) to SNOMED CT.

And in relation to the same Primary Care GP records for those diagnosed with ME/CFS

– ME/CFS used to be coded as both a ‘multisystem disorder’ and a ‘mental health disorder’, but thanks to the Countess of Mar’s intervention the ‘mental health disorder’ part was dropped from July 2015.

Yes. Note the Parent that was dropped was Parent: Mental disorder not "Mental health disorder".

But under the changes to SNOMED in 2017 the ‘multisystem disorder’ category was retired so ME/CFS has been in a kind of coding 'no man’s land' since then...

Yes.

...except if all goes to plan, thanks to Forward-ME, it should be entered under the SNOMED CT ‘Disorder of Nervous System’ SCTID: 52702003 code from July onwards, consolidating the relationship with the previous ICD-10 G93.3 code that the Government appears to insist that it is adhering to???

Yes.

Suzy Chapman drafted the text for the Request for Change and the Rationale in support of the request, for Forward-ME, and had also briefed Lady Mar on the process for submission of requests for change.

Note: SCTID: 52702003 is the SNOMED CT ID for Chronic fatigue syndrome (disorder).
The ID for Disorder of nervous system (disorder) is SCTID: 118940003.

And Post-viral fatigue syndrome is listed elsewhere under Post-infectious disorder, sub-parent of Post-viral disorder.

Yes. Postviral fatigue syndrome has had a discrete ID since July 2015 and can be viewed here:

https://termbrowser.nhs.uk/?perspec...gRefset=999001261000000100,999000691000001104

Is that all correct?

Yes, apart from the ID for Disorder of nervous system (disorder).

 

[Dx Revision Watch]

@Dx Revision Watch

Quick question -

Does this all apply to patients in Wales, Scotland and Northern Ireland too?

I would need to check that. I will check over the weekend as I'm tied up fire fighting, today.

 

[Dx Revision Watch]

http://www.forwardme.org.uk/Reports/Communication from the Countess of Mar regardng BSS.pdf

I hope those accessing the statement above will read it in the context of the two documents to which the statement relates.

I remain very concerned about some of the content of these two documents, for example:

"Criteria for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease."

and

"What Can We Do About It?
It is very important to be clear and focused about the nature of the objection. ME advocates have no reason to object to the basic criteria for BSS in the ICD for primary care, ICD-11-PHC*. In fact, it is in the interests of ME patients to encourage the WHO to adopt just the basic criteria for BSS as they are currently in place. Both studies by the WHO support doing so, and an additional, independent study in Austria also supports doing so. This is the goal."


Caveat emptor.

*The ICD-10 PHC and its eventual revision, the ICD-11 PHC, contain only mental disorder categories (27 proposed disorders for the ICD-11 PHC), and no other disorders.

 

[Dx Revision Watch]

http://www.forwardme.org.uk/Reports/Communication from the Countess of Mar regardng BSS.pdf[

Our current understanding is that BSS would be set up in such a way that it does not allow doctors to conclude that ME is a biological disease. Instead, it ensures that ME patients will be captured with a psychiatric diagnosis.  If BSS is included in the next revision of the ICD, this would override any guidance, including the UK guideline published by the National Institute of Health and Care Excellence, that recognises ME as a biological disease. This could have serious implications for treatment and symptom management.  We understand that the news about BSS is a worrying development...

Note that for the core ICD-11 edition (the equivalent of ICD-10's Tabular List), it is Bodily distress disorder (BDD) that is the proposed construct. This proposed ICD-11 category term is the concept term that has already been added to SNOMED CT (in July 2017).

See: https://dxrevisionwatch.files.wordpress.com/2018/04/bdd-3.pdf

for ongoing concerns about ICD-11's BDD.


BSS (Bodily stress syndrome) is the construct proposed by the PCCG working group that has been making recommendations to ICD Revision for the ICD-11 PHC mental disorder publication (27 mental disorders).

What used to be known as the Diagnostic and management guidelines for mental disorders in primary care: ICD-10. Chapter V, Primary care version* (1996) is a publication for use as a clinical tool for assisting primary care practitioners and non medically trained health workers in diagnosis and management of 27 "common mental disorders." Also intended for use in low- to middle-income countries and in low resource settings where access to the core edition Tabular List and to trained clinicians is not practical or available.

The two mandatory terminology and classifications for use in the NHS are SNOMED CT (mandatory for primary care from April 2018), and ICD-10 Version 2015.

SNOMED CT is planned to be adopted across all NHS clinical settings by 2020.

* http://www.who.int/iris/handle/10665/41852

 

[lilpink]

This is extremely concerning.

 

[Dx Revision Watch]

This is extremely concerning.

Yes, it is most disconcerting that Forward-ME is giving a platform to a document claiming:

"Criteria for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease."

and

"What Can We Do About It?
It is very important to be clear and focused about the nature of the objection. ME advocates have no reason to object to the basic criteria for BSS in the ICD for primary care, ICD-11-PHC*. In fact, it is in the interests of ME patients to encourage the WHO to adopt just the basic criteria for BSS as they are currently in place. Both studies by the WHO support doing so, and an additional, independent study in Austria also supports doing so. This is the goal."


and that this document sat on the Forward-ME site for nearly a week, with no response or caveats from Forward-ME's chair and its linked organizations, and it continues to sit there.


In April 2017, Forward-ME had supported my proposal and that submitted jointly with Mary Dimmock, for the addition of specified exclusions for PVFS, BME and CFS under BDD - for three reasons:

Firstly, patients waiting for a diagnosis are at risk of being misdiagnosed with BDD;

Secondly, patients who already have a diagnosis are at risk of being assigned an additional diagnosis of BDD, since BDD (like SSD from which it is adapted) can be diagnosed as a "bolt-on" mental disorder in patients with chronic, distressing symptoms associated with any general medical diseases if the clinician considers they also meet the criteria for an additional diagnosis of BDD.

Thirdly, as set out in this document, the term "Bodily distress disorder" has been in use since at least 2007, in research papers, editorials and commentaries and in the field, and is being used synonymously for the diagnostic construct term, "Bodily distress syndrome" (Fink et al. 2007, 2010).

Since researchers and clinicians are having difficulty differentiating between the two terms, this has considerable implications for construct integrity, now that the ICD-11 core version (the equivalent to the ICD-10 Tabular List) and its specialty guideline, Clinical Descriptions and Diagnostic Guidelines for ICD-11 Mental and Behavioural Disorders (the equivalent of ICD-10's "Blue Book") are repurposing a term already strongly associated with Fink's BDS.

As I've posted here many times before, in the DSM-5 SSD field trials, around 26% of the "functional somatic" study group had met the criteria for an additional diagnosis of SSD. Around 15% of the "diagnosed illness" study group (described as patients with an existing cancer or cardiovascular disease diagnosis) had met the criteria for an additional diagnosis of SSD.

BDD is very problematic for ME patients, as is any flavour of "Bodily stress syndrome".


The document that contains those quotes above also claims:

"Why Hasn’t Anyone Heard About This?

"It has been reasonable for those who work in ME advocacy to focus on the beta draft for the general ICD. As that draft has publicly developed, however, a different ICD has been developed outside of public view that will only be used in primary care..."

The PCCG has been working on recommendations for the revision of the ICD-10 PHC" since 2010. I have been reporting on developments with this work group and highlighting the group's progress reports and position papers since at least mid 2012. There are in depth reports on my website and the issue of the PCCG work group's proposals have been discussed on this forum and elsewhere since at least 2012.

 

[ScottTriGuy]

Maybe this has been asked before, but would engaging MEAction (seemingly the closest thing we have to an international advocacy org) be helpful?

Where / who needs to be targeted to best make change?

Do we need to need to apply pressure to our countries' rep on the ICD?

And / or is there someone (or cmmttee) in ICD that pressure should be publicly applied?

 

[lilpink]

Maybe this has been asked before, but would engaging MEAction (seemingly the closest thing we have to an international advocacy org) be helpful?

Where / who needs to be targeted to best make change?

Do we need to need to apply pressure to our countries' rep on the ICD?

And / or is there someone (or cmmttee) in ICD that pressure should be publicly applied?

Personally I'm not a fan of MEAction. Tuller has said in an earlier blog that he will cover MUS and all its implications in upcoming blogs. I think patients need to gently advocate that MUS needs to be dissected sooner rather than later. Tuller is probably best placed for this and already up to speed with some of the MUS / IAPT background.

 

[lilpink]

Suzy Chapman drafted the text for the Request for Change and the Rationale in support of the request, for Forward-ME, and had also briefed Lady Mar on the process for submission of requests for change.

Many thanks to Suzy for the immense amount of work she has done on our behalf and for her meticulous attention to detail and accuracy.


I too remain very concerned about the BDD and BSS codes, we all need to be. I fervently hope Forward ME and the CoM are properly on message with this as it is essential the right noises are made. I do worry about Diane O'Leary's influence which doesn't seem to be useful (imo).

 

[lilpink]

This research intervention - https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/a-couple-based-psychological-intervention-for-chronic-fatigue-syndrome/

that has been flagged up on the S4ME site - https://www.s4me.info/threads/a-couple-based-psychological-intervention-for-chronic-fatigue-syndrome-in-progress-april-2018.3688/

appears to be in conjunction with the IAPT MUS service - Talking Therapies Southwark (UK) - https://slam-iapt.nhs.uk/southwark/welcome-to-southwark-psychological-therapies-service/


This article - https://www.researchgate.net/publication/281679634_Long-term_conditions_and_medically-unexplained_symptoms_Feasibility_of_cognitive_behavioural_interventions_within_the_improving_access_to_Psychological_Therapies_Programme - shows that Southwark is one of the areas where LTC/MUS patients are part of the IAPT programme.

 

[lilpink]

I have been reporting on developments with this work group and highlighting the group's progress reports and position papers since at least mid 2012. There are in depth reports on my website and the issue of the PCCG work group's proposals have been discussed on this forum and elsewhere since at least 2012.

So frustrating for you to have done all this work and still we have Forward ME seemingly accepting the notion that going forward the NICE Guideline should accept CBT/GET as 'neutral' which is utterly bizarre but being championed by Charles Shepherd and the MEA and of course this capitulation over BDD/BSS neither of which should have any place in in the lexicon acceptable to any patient with ME imo.

 

[lilpink]

http://www.forwardme.org.uk/Reports/Communication from the Countess of Mar regardng BSS.pdf

Presumably click on the 9th April communication here -

http://www.forward-me.org.uk/ - for those who couldn't access the pdf link above.


I find this worrying too. Neither BDD nor BSS should have any place in coding ME.

 

[Dx Revision Watch]

@lilpink

You asked me about patients with legacy Read Codes (CTv3) now that SNOMED CT has replaced the Read Code system and has become the mandatory system for use in NHS Primary Care.


Presentation:

https://confluence.ihtsdotools.org/...rsion=1&modificationDate=1509382743000&api=v2

From Read codes to SNOMED CT
SNOMED CT in Primary Care

Slide #14

Transition to SNOMED CT – dual coding

• Mapped Read coded Data has an associated SNOMED CT code
• New data in SNOMED CT will have an equivalent Read code where these exist (SNOMED CTsubset )
• Dual coded, existing searches, reports, templates, protocols will continue to work – until content only in SNOMED CT is required

Historical data has SNOMED CT and Read codes - Dual coding continues – planned till April 2020
Solutions Development and Testing - April 2018 onwards – systems utilise SNOMED CT

 

[lilpink]

To reiterate from #672 :

The noble Lord, Lord O'Shaughnessy, unless of course he was incompetent at his job as Minister/ Parliamentary Under-Secretary in the Department of Health, must surely have been aware in July 2017 that the IAPT programme was coding ME/CFS and MUS patients with ICD-10 F45.0 when he indicated that the Government was following the WHO classification - https://hansard.parliament.uk/Lords/2017-07-04/debates/4948C210-9F51-4C17-8844-D974766C636C/HealthMedicallyUnexplainedSymptoms .

Lord O'Shaughnessy has also quite recently provided a similar answer in writing when asked for clarification on this issue of ME/CFS coding by a Tory MP on behalf of a constituent. Why does he apparently refuse to admit that the ICD-10 F45.0 code is being used by the IAPT programme? Could he possibly be ashamed that thousands of patients, in excess of 90% of those referred for ME/CFS or 'MUS' to IAPT (see #674) , are being deliberately dished out this mental health diagnosis and being labelled with a condition that they don't have? He certainly should be.

No wonder this Government is so keen on ending the 'stigma' surrounding mental health - we're now all at risk of being diagnosed with mental health conditions to prevent us from accessing biomedical care, but to contest this is to 'stigmatize' those with mental health disorders.

And don't forget the poor people in the LTC - Long Term Conditions - arm of the IAPT programme who, rather than being encouraged to be health vigilant regarding their recognized health conditions, are very likely now being rewarded for their vigilance by being diagnosed with 'health anxiety' instead, in order to stop them from accessing proper care and so slash billions from the NHS budget.

One of the groups being targeted in this way are those with sickle cell anaemia Long-term conditions positive practice guide - UEA ( see page 7 ) - a disease that primarily affects African and Caribbean populations. Get the picture? - https://www.youtube.com/watch?v=Q4SIP7EZze4.

 

[Dx Revision Watch]

Maybe this has been asked before, but would engaging MEAction (seemingly the closest thing we have to an international advocacy org) be helpful?

Where / who needs to be targeted to best make change?

Do we need to need to apply pressure to our countries' rep on the ICD?

And / or is there someone (or cmmttee) in ICD that pressure should be publicly applied?

Classification and coding are complex issues.

These are the classification and terminology systems currently of interest to us:

ICD-10
ICD-11 and its associated publications

These ICD country modifications:

ICD-10-CM (USA)
ICD-10-CA (Canada)
ICD-10-GM (Germany)
ICD-10-AM (Australia, also used by Ireland)

SNOMED CT International Edition and its various country extensions

ICPC-2 (The International Classification of Primary Care, managed by WONCA)


Dialogues are already established and ongoing with:

ICD-11 (via WHO and via the ICD Revision Project)

ICD-10-CM (USA) - experienced US advocates who are knowledgeable about coding and classification are actively engaging with NCHS/CDC who manage the US's clinical modification of ICD-10.

SNOMED CT - ongoing engagement with the International Edition managers and UK National Release Centre.


Any potential approaches by any organizations depend on what specific changes you are seeking and which terminology and classification systems are mandatory in specific countries.


Organized "public pressure" is not a productive method of engagement with WHO and ICD Revision.

For ICD-11, there is a public platform for submitting and commenting on proposals and as I have mentioned above, there are organizations actively engaged in dialogue with ICD Revision.

For the ICD-10 country modifications, as you know, there are public processes for submitting proposals for consideration of changes.


WHO is scheduled to release an initial version of ICD-11 in June this year for evaluation by member states and to enable them to start the process of preparation for migration to the new edition.

Member states will do this at their own pace and according to the requirements of their countries' health systems.

WHO won't be seeking WHA endorsement for ICD-11 until May 2019.

Adoption of ICD-11 isn't going to happen overnight.

No member states will be ready to transition from ICD-10 to ICD-11 for a number of years and ICD-11 will continue to evolve until a more stable release is reached, in around three to five years.

The Proposal Mechanism platform will remain open for future proposals and there is currently a backlog of around 1000 existing proposals that will need to be processed over the next year or so.

WHO is also putting some of the work that remains to be done out to contract, as it does not have the manpower to complete some of the outstanding tasks in the first six months after the initial release.

As soon as I have the time, I will update this forum on developments with ICD-11 and on the current status of proposals for PVFS, BME, and CFS.


So before I could properly address any of your questions, I would need to know what are you seeking to change, in which classification and terminology system, and for which country - because all these various systems have processes for the submission for changes to an existing edition, or for inputting into overall revision processes.

With respect for the work that they do and for what they have achieved, it has been evident from the debacle over the various documents released over the last couple of weeks, in relation to the recommendations of the external work group that has been advising on the revision of the 1996 publication known as the "Diagnostic and management guidelines for mental disorders in primary care: ICD-10. Chapter 5, Primary care version" (aka ICD-10 PHC), that MEaction isn't best placed to involve itself in classification and coding issues, without reaching out for assistance from advocates who do have experience in these areas to try and guide them in understanding the complexities.

I will update on the current status of ICD-11 as soon as I have time, but I will start a dedicated thread for that.