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

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
@ Irene - very true, and myself and my sister (asthmatic) are just old enough to have experienced that attitude from the medical profession and others. My sister was not taken seriously by the GP and denied treatment as a very young child and ended up in an oxygen tent - she was lucky. I'm interested to read your link later, thanks.

I do think things have thankfully changed now. No one is going to get away with claiming my asthma is somehow my mum's fault.
I also think that the system already in place in the UK using asthma nurses in GP surgeries (I don't know if it's universal)is likely to make spending resources on the approach in the cochrane report a nonstarter for asthma.
I developed asthma from smoking in the early 80s. An Indian doctor at the hospital where I was working (I fancied him!) gave me an informal diagnosis and advice to give up smoking. I managed eventually to do the latter and it went away. It was pretty bad. Wheezing, struggling to breathe, using inhalers (when essential, as they caused the shakes and wakefulness).
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
http://www.kirklees.gov.uk/beta/delivering-services/pdf/HNA-report.pdf

Kirklees Mental Health and Wellbeing Needs Assessment
, January 2018

(pp 92-95)

6.12.2 Medically Unexplained Symptoms (MUS)


kiklees1.png
 
Messages
32
Implementation guidance docs up on RCP website on IAPT LTC/MUS pathway:

http://www.rcpsych.ac.uk/workinpsychiatry/nccmh/mentalhealthcarepathways/improvingaccess.aspx

The IAPT pathway for people with long-term physical health conditions and medically unexplained symptoms:
- Full implementation guidance and appendices
- Helpful resources
- Short guide

(The IAPT Manual - Awaiting publication:
-Full implementation guidance
-Appendices and helpful resources)

2018/19 – 'All CCGs will be asked to recruit additional staff and commission IAPTLTC services. Additional funding will be included in CCG baselines from April 2018.'

From the full implementation guidance:

http://www.rcpsych.ac.uk/pdf/IAPT-LTC%20_Full_Implementation_Guidance.pdf

MUS explicitly includes CFS and defined as:

P. 12 '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 of MUS include: chronic fatigue syndrome, chronic pain and irritable bowel syndrome.'

IAPT for LTC/MUS is being called IAPT-LTC:

'Definitions of terms and abbreviations

'IAPT-LTC: A term used in this guidance to refer to IAPT services embedded in general health care pathways for people with LTCs or MUS.'

p. 23 Table 5: CFS receives high intensity intervention being CBT/GET under Nice guideline CG53. Asterisk denoting specialist forms of CBT. Notes NICE depression guideline under review but does not mention review of CFS.

p29 'Healthcare utilisation: it is expected that the treatment of mental health problems will, in general, reduce a person’s use of other health service resources. Documenting this effect will be important for sustaining IAPT-LTC services.'

Further on analysis of efficacy:

[ Outcome measures are reported as part of the standard data set generated by IAPTs and submitted via the mental health bureau service on the Open Exeter portal provided by NHS Digital. V.1.5 of the data set includes certain outcome measures. The expanded data set for sites collecting on LTC/MUS for evaluation of the 'Integrated IAPT Early Inplementers Programme' includes the outcome measure for Chalder Fatigue Scale. (See: http://content.digital.nhs.uk/iapt )]

p. 30 Outcome measure PHQ-9 for depression symptom under CFS and Chalder fatigue scale to evaluate MUS 'symptom' under CFS.

'Recovery, reliable improvement and reliable deterioration rate calculations should be based on the pair measures highlighted in bold.'

Both PHQ-9 and Chalder Fatigue Scale are bolded.

Despite PHQ-9 for depression element, no reference of need for depression or anxiety to be present to refer to IAPT for MUS.

'Recovery', 'reliable improvement', 'reliable recovery' are defined uninterpretably loosely under this section. (under definitions of terms and abbreviations)

Section 6 practical guidance for Commissioners including discouraging information on resource management:

p. 36 'Shifting the flow of money between providers: transformational change in service delivery may require transformational change in the flow of money. Commissioners must consider the challenges this will present and how it will be addressed. Plans for IAPT-LTC services should consider how money will flow across providers to support greater service integration. Sustainable change is likely to involve the reallocation or redistribution of money across the system.'

p36 'Consideration should also be given to payment models that inadvertently create perverse incentives and prevent delivery of IAPT-LTC services.'

If you still haven't had soh failure:
p. 13 ‘If I go to see someone about my eyes, my eyes are what I am and the rest of me doesn’t matter. It’s the same with mental health. If I go to see someone for a mental health problem, I am a mental health problem.
Source: Person with lived experience.' #Iamwhateyeam
 
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lilpink

Senior Member
Messages
988
Location
UK
! IMPORTANT WARNING FOR ALL UK ME and MUS PATIENTS!


The whole ME community should be made aware that in England now any ME (or indeed MUS) patients who agree to join the IAPT (Improving Access to Psychological Therapies) programme are being deliberately clinically coded as having somatization disorder under ICD-10 F45.0 . Report on Integrated IAPT services pilot - NHS Digital (NB The ‘pilot’ is actually the beginning of the IAPT MUS roll-out, it won’t come to an end).


All patients on the programme who are deemed to have ‘MUS’ or medically unexplained symptoms are coded in this way, regardless it seems of what symptoms, or how many symptoms, they have. This is not just ‘business as usual’ for the BPS School. 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. This is being done to stop patients accessing investigations and treatment in order to save £billions from the NHS budget. It is the fulfilment of their proposal outlined in this 2011 document - Medically Unexplained Symptoms (MUS) - London Health Programmes


where they proposed using a 16H coding for all MUS patients to exclude them from care. The ICD-10 F45.0 coding for ME/CFS patients goes against the WHO classification but the Government appears to be insisting that it is still adhering to the WHO classification. It seems that they say one thing and do another.


Report on Integrated IAPT services pilot - NHS Digital

VERSUS

https://hansard.parliament.uk/Lords/2017-07-04/debates/4948C210-9F51-4C17-8844-D974766C636C/HealthMedicallyUnexplainedSymptoms


In addition, IAPT patients should be made aware that the data that the programme is collecting from them at each session is combined with their primary and secondary record data (in pseudonymized form) to come up with the amount that each patient costs the NHS before and after IAPT treatment. It will probably also be used for ‘health informatics research’ purposes and to direct and substantiate policy.

Please pass this information on to all ME patients that you know, and especially to those who live in the UK. Patients in England must be made aware that to go along with their doctors and sign up to IAPT psychological therapies for ME/CFS or any unexplained symptom is an extremely dangerous thing to do. They will be branded with somatization disorder and any investigations and treatment for any condition could be withheld from them on that basis.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/MUS-whole-systems-approach.pdf

Medically Unexplained Symptoms (MUS)
A whole systems approach

July 2009 – December 2010

Page 20

"It may be possible within the new polyclinic model that the routine of psychologists working
with consultants would develop. Equally, they could work in hospitals in more structured ways
such as a ‘pelvic pain’ clinic.

"We would suggest that one consultant in each department should lead on this area of the
work, helping other consultants to think about difficult presentations, ensuring patients can
access the psychologist appropriately and reviewing the care of patients where no biological
explanation can be found. At present, patients are referred back to primary care or on to
another secondary care department, thus allowing the clinician to maintain the idea that
medically unexplained symptoms are not part of their work.

"It will be necessary for acute clinicians working in these clinics to code patients that they feel
may have MUS. There are often no codes available to do this in these specialities. We would
advise therefore that the ICD codes F44, F45 and F48 are used as ‘catch-all’ codes. These
would include any situation where the clinicians felt there was an element of MUS affecting the
patient and their management.
This is necessary in order for outcomes to be quantifiable.
These codes are to be used to monitor outcomes; clinicians can use the codes where
appropriate, in conjunction with other codes.
"


Note that under F48.0 Neurasthenia (and its inclusion: Fatigue syndrome) there is an exclusion (Excl.) for G93.3.

Also note:

page-81.png



But there are no exclusions for G93.3 under the ICD-10 F45.x codes.

So an additional F45.x diagnosis can be added to an existing or new diagnosis of G93.3, or to any other disease or condition.

"F45 Somatoform disorders

"The main feature is repeated presentation of physical symptoms together with persistent requests for medical investigations, in spite of repeated negative findings and reassurances by doctors that the symptoms have no physical basis. If any physical disorders are present, they do not explain the nature and extent of the symptoms or the distress and preoccupation of the patient."



Compare this with Bodily distress disorder for ICD-11, which replaces most of the ICD-10 Somatoform disorder categories and also subsumes and replaces F48.0 Neurasthenia.

A patient may be diagnosed with BDD, or an additional diagnosis of BDD can be added in the presence of a general medical condition or disease.

"...If another health condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression."


BDD is very problematic, which is why I continue to push for exclusions for the G93.3 legacy terms:

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


SNOMED CT:

BDD has already been added to SNOMED CT (since the July 2017 Release).

BDD isn't included in ICD-10, but is cross mapped to F45.9 Somatoform disorder, unspecified for the SNOMED CT to ICD-10 cross map tables.

SNOMED CT has replaced the Read Codes (CTv3) system and became mandatory for use in NHS primary care on 1 April 2018.

SNOMED CT is planned to be mandatory for use across all NHS secondary care and other settings from 2020.
 

lilpink

Senior Member
Messages
988
Location
UK
Yes, an additional F45 diagnosis can be added, but to add F45.0 to all MUS patients in IAPT is to say that they all have somatization disorder, which of course is complete nonsense. The paper on which IAPT MUS costings (that prop up the whole IAPT programme) are based https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2939455/ infers that less than 10% of those that they categorize as ‘MUS’ patients actually have ‘somatization disorder’, the rest according to them having ‘subthreshold’ somatization. Of course this is all rubbish, but if you accept their figures then they are now coding more than 90% of their ‘MUS’ cohort with a diagnosis that they simply, by their own inferred admission, do not have. (See #672)


Clearly changes are on the way, and UK MUS patients may end up in future with BDD or perhaps BSS labels. We need to stay on top of these changes, and many thanks to DxRevision Watch for doing that and for working/lobbying on our behalf. When the changes occur, I wonder will all old existing codes be changed to the new ones?
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
https://mus.elft.nhs.uk/Care-pathway

NHS East London

Care Pathway

Reduce unplanned/unnecessary
attendance in secondary care


Objectives
  • Increase MUS patient satisfaction through adequate treatment, signposting and care
  • Make the patient feel understood
  • Improve engagement techniques between clinical professionals and MUS patients
  • Deliver an integrated care package incorporating best practice from primary and secondary care
  • Reduce the intensity and frequency of somatic complaints and improve functioning in somatising patients
  • Reduce unplanned / unnecessary attendance in primary care
  • Reduce unplanned / unnecessary attendance in secondary care.
Through the delivery of a holistic care pathway MUS sufferers are supported to take a more active role in their own health care and to have better health outcomes.

Care Pathway Elements
Participating GP surgeries undergo specialist training regarding recognition/identification and best practice points for MUS patients (based upon the experiences from somatoform disorder/MUS clinics in East London NHS Foundation Trust and also utilising the NHS Commissioning support for London training package .
One day trainings are delivered to all practice staff by a team of experts: consultant specialist in psychosomatic medicine, psychologist and BOPT practitioner.

Identification and assessment

Applying systematic healthcare technologies, a case-finder system is implemented at each surgery that provides the care pathway. Using an algorithm for patient identification the electronic database/filing system is scanned for identifiers of patients who potentially fit the criteria for MUS diagnosis. Criteria will include service utilisation in the absence of coded significant and associated physical health diagnosis e.g.:

•Surgery attendances
•Referrals to specialist services
•A&E attendances
•Hospital admissions

Practice staff are taught how to apply the case-finder clinical algorithm: pain in different locations, non-specific complaints affecting multiple organ systems, repeated complaints of fatigue or exhaustion, symptoms occur in the context of a stressful lifestyle or stressful life events, somatisation “plus” (anxiety/depressive symptoms).

All identified patients are coded using the read code 16h (unexplained symptoms continue).

Engagement: Meeting the patient "at home", i.e. at the level of and fully acknowledging their bodily complaints and associated problems.

Given the specific characteristics of this patient group and their health/explanatory beliefs, a range of active engagement processes is employed, including:

•open 45 minute baseline interview with interest in and time for the physical complaints (how, when, where, under which circumstances, when less…)
•utilising a range of in-debt somatic symptom questionnaires, health related quality of life measures, treatment satisfaction scales
•provision of specific information leaflets distributed by the GP
•patient health advice/psychoeducation groups or individual sessions (2-4 sessions per patient)
•signposting to secondary care somatoform disorder clinic for more complex patients (structured systematic assessment and treatment clinic).

Treatment/Interventions: (according to patient choice; 8-10 sessions):

Group sessions explicitly focusing upon and engaging with bodily symptoms in therapy (Psychoeducation, Mindfulness Based Stress Reduction and Body Oriented Psychological Interventions offered as "Strategies for Better Living Groups")

(for more details regarding the interventions please refer to information under Training)
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
SNOMED CT UK Edition became the mandatory terminology system for use in NHS Primary Care on April 01, 2018.

(Planned for adoption across all NHS secondary care by 2020.)

SNOMED CT UK Edition has absorbed the Read Codes (CTv3).

Within the SNOMED UK Edition there are a number of 16H equivalent SNOMED CT Concepts:

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


Unexplained symptoms continue (finding)
SCTID: 161904006

which maps to ICD-10 R68.8 Other specified general symptoms and signs

also

Medically unexplained symptoms (finding)
SCTID: 887761000000101

also maps to ICD-10 R68.8 Other specified general symptoms and signs


From SNOMED-CT UK Edition, release for April 01, 2018


snomed-unexplained-symptoms-continue.png


NB: Within SNOMED CT, Concepts marked with a country flag indicate that the Concept term or the Concept term's ID code is specific to that country's extension.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
...The ICD-10 F45.0 coding for ME/CFS patients goes against the WHO classification but the Government appears to be insisting that it is still adhering to the WHO classification. It seems that they say one thing and do another.


I have already mentioned the following "in another place":


Change of Parent for Chronic fatigue syndrome (disorder) SCTID: 52702003


SNOMED CT is structured differently to ICD-10 and ICD-11. SNOMED CT doesn't use a chapter system. Instead, disease and disorder terms are arranged hierarchically under a series of Parent terms which provide "Relationships" for the Concept term.


SNOMED CT International Edition browser and a number of country editions can be viewed here:

http://browser.ihtsdotools.org/?

NHS Digital managed UK Edition can be viewed here:

https://termbrowser.nhs.uk/?


History of CFS, ME in SNOMED CT:

In SNOMED CT, the lead term is Chronic fatigue syndrome (Concept SCTID: 52702003).

Prior to July 2015, CFS and its Synonym terms were assigned two Parents: Multisystem disorder; and Mental disorder.

Following discussions between the Countess of Mar and SNOMED International, it was agreed that the Mental disorder Parent would be removed from CFS and that this would be actioned for the July 2015 release.

At the same time, a change was made for the listing of Postviral fatigue syndrome (a change which had not been requested by the Countess of Mar).

Postviral fatigue syndrome had been listed under Children to CFS. But PVFS was now assigned a new SCTID code of its own and moved under new Parents: Post-viral disorder, under Parent: Post-infectious disorder.


The Multisystem disorder Parent retired:

In 2017, the SNOMED International classification managers decided that the Parent term: Multisystem disorder was not sufficiently specific for the purposes of their terminology system and that the term should be retired from use, across the entire system.

The Multisystem disorder Parent had 90 Concept terms located under it, including CFS. So its retirement for the January 2018 release had implications for all of these terms - not just for CFS.

When the Multisystem disorder Parent was retired, many of these 90 terms were relocated under more specific Parents. A few of these terms, including CFS, were not re-assigned to new Parents.

(A small number of these 90 terms have been retired from the system altogether because they were historical terms, or duplicates or were considered to be ambiguous terms that were unsuitable for inclusion.)

The removal of the Multisystem disorder Parent left CFS without a body system or aetiology Parent. Now, its only Parents were:

Parents

Clinical finding (finding)
  • Disease (disorder)

We felt this was not ideal. But it presented a good opportunity to request that a more specific Parent should be assigned to CFS.

Via Forward-ME, a formal request and a rationale text for adding the Parent: Disorder of nervous system to CFS was submitted.

A couple of weeks later, we were advised that the request for this change had been entered into the International Edition's peer review process and had been approved.

The change is scheduled to be actioned for the July 2018 release.

This change would then be incorporated into the next release of the UK Edition, in October 2018, and in all the country editions, as they publish their new releases.

If this change goes forward without any unforeseen delays, then for the July 2018 release, CFS should display like this in SNOMED CT:

Parents

Disorder of body system (disorder)

Disorder of nervous system (disorder)


Chronic fatigue syndrome (disorder) SCTID: 52702003


52702003 | Chronic fatigue syndrome (disorder) |

Myalgic encephalitis
Myalgic encephalopathy
Iceland disease
Benign myalgic encephalomyelitis
Chronic fatigue syndrome
Myalgic encephalomyelitis syndrome
ME - Myalgic encephalomyelitis
Myalgic encephalomyelitis
CFS - Chronic fatigue syndrome
Chronic fatigue syndrome (disorder)

Children


There are no Children under CFS in the International Edition. But the UK Edition includes three severity specifier options: Mild CFS; Moderate CFS; Severe CFS. These are marked with the Union Flag symbol, to indicate that inclusion of these three additional severity terms is specific to the UK Edition.

For SNOMED CT, SCTID: 52702003 Chronic fatigue syndrome (disorder) was already cross mapped to ICD-10 G93.3. This change of Parent consolidates that relationship.


Caveat:


This request for addition of the Parent: Disorder of nervous system has been accepted. But the draft for the next release has not yet been finalized. I will update you again once it has reached the pre-finalization stage (a few weeks before the July release goes live).


UPDATE at June 11, 2018:

The July 31, 2018 Release has now reached the BETA Release stage:


https://confluence.ihtsdotools.org/...nal+Edition+Beta+release+available+to+Members
 
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