MUS services in UK and other MUS related issues

So the “gold standard” Chalder Fatigue Questionnaire is used in these official stats to report the performance of IAPT Long Term Conditions aka MUS as a measure of “recovery” for CFS Executive Summary Appendix 3,

There is a current discussion on this questionnaire on this thread:

https://www.s4me.info/threads/brist...lder-fatigue-questionnaire.10683/#post-196078

IAPT 'CFS' services must surely be an important consideration for the NICE guidelines group. Again, it's trivalising ME and confounding it with 'idiopathic chronic fatigue'.

I also noted that they have described the current 'recovery' measurements as still being in 'development'. Presumably they will adjust/manipulate the boundaries as time goes on to ensure that the minumum 50% 'recovery' target is consistently met!
 
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."


Contrary to Dr Diane O'Leary's contention that:

"Criteria* for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease" [1]

BDD is very problematic and I have continued to push for exclusions for the ICD-11 8E49 terms.

*NB: There are no "criteria" as such for ICD-11's BDD but a disorder description and characterization text, which allows clinicians more flexibility to use clinical judgement when assessing whether a patient meets the required features and disorder description than the more rigid DSM-5 Somatic symptom disorder (SSD) criteria set and thus poses an even greater threat to patients with chronic, multiple symptoms.

1 “BODILY STRESS SYNDROME” INFO SHEET, March 2018, Dr Diane O'Leary for Forward-ME:
http://www.forward-me.org.uk/Reports/BODILY STRESS SYNDROME INFO SHEET CORRECTED.pdf
just like Stalinist Russia we will put political officers in place to keep everyone in place ie doctors who do not agree with our interpretation of mus may assume there will be a consequence to expressing different viewpoints .stinks of empire building .
 
part of a job advert
Locations: Across Norfolk

The Wellbeing Service is part of the national IAPT programme, aimed at helping people across Norfolk and Waveney aged 16 and over, who are suffering with mild to moderately severe anxiety and depression. It is a well-established partnership between Norfolk & Suffolk NHS Foundation Trust (NSFT) and Mind.
We are very excited to be expanding the Wellbeing Service in order to help more people with long term physical health conditions (LTCs) or medically unexplained symptoms (MUS). Two thirds of people with these conditions have a co-morbid mental health problem, mostly anxiety and depression.

As part of this expansion, we are seeking a number of well-motivated individuals to join us as Qualified or Trainee Psychological Wellbeing Practitioners (PWPs). PWPs provide high volume, low intensity psychological self-management interventions which are based on Cognitive Behavioural Therapy (CBT) and form Step 2 of the stepped care model, as recommended in NICE guidelines.

The training (which is fully funded) consists of either the Post-Graduate or the Under-Graduate certificate (depending upon prior qualifications) in Evidence Based Low Intensity CBT at the University of East Anglia. In all cases, training requires weekly attendance over one year at the University of East Anglia, starting in March 2020, therefore the successful applicants will need to be available for that time.

A commitment to delivering high quality client care, working well within a team and being responsive and adaptive to change is essential, as are excellent organisational, administrative and IT skills. The role will incorporate a predominance of telephone therapy so good telephone skills would be advantageous. Experience of working with clients with anxiety and/or depression, and of managing a caseload in a previous role will also be an advantage.

Posts will be based in across Norfolk, however there will be times when there will be a need to cover other areas across Norfolk & Waveney. The post holders will need to provide the flexibility to work out of hours during the evenings and weekends where necessary. Being a car driver and /or having the ability to travel independently to locations throughout Norfolk is also essential.

Closing Date: 16th December 2019

Interviews will take place: Week commencing 6th January 2020
https://www.jobs.nhs.uk/showvac/1/2/915863834
 
NHS Data collection IAPT

Version 2.0 Update – Data collection from 1 April 2020
An update to the data set (version 2.0) will go live in April 2020 to collect additional information, such as:
  • internet enabled therapies: information around the delivery of these emerging models of therapy
  • long term physical health conditions and medically unexplained symptoms: bringing in the pilot data items into the core data set
  • additional employment items: to better understand employment outcomes and the provision of employment support
  • languages: to further understand patient demographics
  • care personnel qualifications: to support a richer picture of the IAPT workforce and enable better planning
https://digital.nhs.uk/data-and-inf...ng-access-to-psychological-therapies-data-set
 
Just was reminded of a different institutionalized approach to unexplained illnesses -- the ZusE Marburg (center for undiagnosed/ unrecognized and rare illnesses) first see them as (yet) "unrecognized", "undiagnosed" or "unidentified" illnesses, and second, take into account that suffering from an illness which no one is able to diagnose is likely to cause also emotional responses.

An interview with the center's director Prof. Jürgen Schäfer on "Deutsche Welle":
Who helps when symptoms defy explanation? Prof. Jürgen Schäfer explains how his Center for Undiagnosed Diseases works
https://www.dw.com/en/who-helps-when-symptoms-defy-explanation/av-18895087

Again was reminded of this other perspective with regard to 'MUS' and thought it could be interesting to know this team's stances not only on equating 'unexplained' long term conditions with 'psychosomatic'/ 'psychogenic' but also on 'positive signs' of functional neurological disorders and the like.

In particular, do the 50-60% of cases for which they finally find a diagnosis include 'psychosomatic' explanations? (Which are these?)

Even if they find no cause, do they sometimes at least find more clues about the pathology of an illness?

Also would be interesting to have some examples what they recommend to those 40-50% patients whose illnesses remain undiagnosed.

Might the ZusE doctors agree with @Carolyn Wilshire 's / Tony Ward's paper discussed here: https://www.s4me.info/threads/conce...harpe-and-greco-2019-wilshire-and-ward.12809/ ?

No answers to these questions but some more quotes from additional sources (google-/deepl-translated) :

1) from https://www.focus.de/perspektiven/m...en-mit-seltenen-erkrankungen_id_10264807.html

They all try to help the patients, who have usually contacted the Marburgers through their doctors - all for the same reason: the causes of their complaints are not known, despite often numerous examinations. Many are desperate, have years of medical history behind them. That the Marburg doctors might be able to help them gives them hope.

When Schäfer talks about his work, it is easy to see that it matters a lot to him to help people with undiagnosed diseases. "We must give a voice to the people who are now sitting at home and despairing - and they are not a few. And even if they were only a few, they deserve to be cared for by an institution like ours," he is convinced.
The doctor estimates that he and his team can help 50 to 60 percent of patients. The fact that this sometimes takes a long time is stressful for those affected, but also for the doctors.
You have to be very sensitive in order to carry out this type of diagnosis," said Schäfer who is convinced that this is a very sensitive area. "You have to perceive, feel, listen well and also take into account seemingly unimportant aspects." The diagnostician must leave the usual patterns of thinking, otherwise the reflex can quickly develop, as we have seen before, this must be this or that illness.
(Translated with DeepL Translator)

2) from: https://www.aerzteblatt.de/archiv/1...-seltene-Erkrankungen-Letzte-Hoffnung-Marburg

Marburg not only cares about rare diseases, but also about undetected diseases. Schäfer describes the restriction of centres to rare diseases as a "wasted opportunity". He says: "Patients with unrecognised diseases have it just as hard. The resources and diagnostic procedures required to track down the cause of the complaints are basically the same". The number of cases of undetected diseases in Marburg is greater than the number of rare diseases.

It can be that simple

Schäfer can give plenty of examples of how easy it is sometimes to end patient suffering. Like this one: A patient suffered from severe, unexplainable depression for almost five years. Schäfer stumbled upon a statement by her husband that the woman was well during pregnancy and that a coil was used as contraception afterwards. "That's when the doorbell rang," says Schäfer, who is now naturally sensitized to such statements. The depression was a side effect of the hormone coil. One that was even described in the warnings. Sometimes it can be that simple.

In addition to access to state-of-the-art equipment, the laboratory staff and their medical colleagues benefit from the magic word time. "It can sometimes take months before a clear result is obtained," says Soufi. This time is also taken in the laboratory. The great effort is worth it, nobody here doubts that: "When you learn that a patient is well again after years of suffering because we have found something after all, then that is the greatest joy.

The centre does not operate profitably - that should be clear to everyone. Schäfer does not really want to talk about money. But he does not deny that the annual costs for the ZusE are in the higher six-figure range.
Elsewhere, Schäfer is not at a loss for clear words: "The per-case flat rate system is a huge problem for all maximum care homes. In the past, patients stayed until we knew what was going on. This is how I grew up in medicine. Now doctors have to make a diagnosis after a short time." This repeatedly leads to misjudgements - or the clinical picture remains unrecognized. The DRG system is not designed for rare diseases.
(Translated with DeepL Translator)

And from the consortium that funds the ZusE:
https://www.rhoen-klinikum-ag.com/p...nd-unerkannten-erkrankungen-auf-der-spur.html
https://translate.google.com/translate?hl=de&sl=de&tl=en&u=https://www.rhoen-klinikum-ag.com/presse/stories/seltenen-und-unerkannten-erkrankungen-auf-der-spur.html
 
Great Ormond Street Hospital:
Functional symptoms
Functional symptoms are physical symptoms without an obvious cause. They can also be called Medically Unexplained Symptoms, Somatic Symptom Disorder, Somatoform Disorder or Functional Neurological Disorder. This page from Great Ormond Street Hospital (GOSH) explains about functional symptoms in children and young people and how they can be managed.
https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/functional-symptoms

so, as FND = Conversion disorder, FND = MUS, therefore MUS = Conversion disorder
 
job advert
The RLHIM (The Royal London Hospital for Integrated Medicine) are seeking Band 7 Cognitive Behavioural therapists.

The Royal London Hospital for Integrated Medicine (RLHIM) is part of UCLH (University College London Hospitals NHS Foundation) Trust and is Europe’s largest public sector Centre for integrated medicine.

The hospital offers a range of therapies which are integrated into the NHS and with conventional medicine. All clinics are led by doctors and other healthcare professionals who have received additional training in complementary medicine
Job purpose;
1.) To be a key member of the RLHIM Psychological therapies and AHP teams
2.) To provide highly specialist outpatient cognitive behavioural psychotherapy assessment and treatment to a range of appropriate patients with chronic physical health conditions Specifically chronic Fatigue Syndrome, Fibromyalgia Syndrome and irritable bowl syndrome
https://engenha.com/uk/jobs/bank-cognitive-behavioural-therapist-band-7/4450607
 
Well, they don't seem to think that new NICE GDL will change their approach to people with ME.

Though the above ad appears to be for a bank, rather than permanent post. Anyway there are loads of other MUS people whose illness beliefs need changing.
 
Job ad NHS Sheffield

posting this here rather than on the ME/CFS services because it looks like they are now increasingly integrating the two services; this seems to be the way things are going (see the government report on the IAPT thread)https://www.s4me.info/threads/uk-im...blogs-and-discussion.14318/page-5#post-400260

(MUS and LTCs being combined).

This Band 8a Senior Psychology role is an exciting opportunity for a compassionate, and enthusiastic Senior Clinical Psychologist to join a forward-thinking and dynamic multi-disciplinary team which is therapy-led.

The Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) Service is a specialist, all age, regional therapy service covering South Yorkshire and North Derbyshire. We are looking for a Psychologist who has an interest in working with long-term physical health conditions, and has relevant or transferable skills, to join the adult CFS/ME team
Main duties of the job
The philosophy of the service is to work collaboratively with individuals to enable them to engage with therapeutic strategies to help them manage their condition more effectively. The successful candidate will be sensitive to the needs of people affected by CFS/ME and committed to improving the patient experience and health outcomes for this service user population.

The successful candidate will be an integral member of a team in which clinical psychology is well-established and highly valued. They will work directly with service users and their families who have opted for psychological support and provide indirect interventions with staff and other agencies through joint work, consultation, teaching and training.

The role also includes close collaborative working with the Sheffield IAPT Health and Wellbeing Service and taking the lead for the CFS/ME Service in the newly developed integrated pathway between these services


https://www.healthjobsuk.com/job/UK...l_Psychologist/Clinical_Psychologist-v3694687
 
job ad
Senior Assistant Psychologist
Berkshire Healthcare Foundation Trust
Talking Therapies is Berkshire's Improving Access to Psychological Therapies (IAPT) service. The post holder will be part of the Talking Therapies Long Term Conditions (LTC) / Medically Unexplained Symptoms (MUS) team, and will play a key role in supporting the delivery of our service for people living with long term conditions and persistent physical symptoms.
  • The post holder will join one of the largest IAPT services in the country to help us realise our ambitions in terms of the Long-Term Plan.
  • The post holder will join a small but expanding team focusing on the service response to the challenges faced by living with long term conditions and persistent physical symptoms, including Long COVID.
https://www.jobs.nhs.uk/candidate/j...=psychologist&payRange=30-40&language=&page=2
 
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