The American Psychiatric Association’s, 2013 DSM-5 abandoned the use of the term ‘medically unexplained symptoms’ for non-neurological disorders. In the UK, treatments for various medical illnesses with unexplained aetiology, such as chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia, continue to fall under an MUS umbrella with cognitive behavioural therapy promoted as a primary therapeutic approach. In this editorial, we comment on whether the MUS concept is a viable diagnostic term, the credibility of the cognitive-behavioural MUS treatment model, the necessity of practitioner training and the validity of evidence of effectiveness in routine practice.
Improving Access to Psychological Therapies (IAPT) therapists working with long term conditions (LTC’s) have confidence and organisational, issues Carroll et al (2021) DOI: 10.1111/bjhp.12475. Whilst therapists working in secondary care, with LTC’s, face fewer obstacles to multidisciplinary working, with a focus primarily on the LTC and not on the associated depression/anxiety as in IAPT. Further the metrics for outcome in secondary care are likely to be much broader than in IAPT. LTCs by their very nature, wax and wane with a consequent impact on availability and concentration, creating a need for any therapy to be long term. But IAPT has a major focus on access and waiting times, such that any treatment is usually brief, comprising on average of 6 sessions, thus the service cannot readily accommodate working with LTCs.
The focus in the Carroll et al (2021) is on how the psychological treatment for those with LTC”s can be best integrated into primary and secondary care. They note however that the model they use to identify barriers and facilitating factors to implementation, first requires, evidence that the chosen intervention/s are effective. But they do not address this point. This is crucial, where is the evidence that the psychological therapies for disorders that are comorbid with LTCS make a real world difference?
A case has long been made that it is a matter of basic humanity to offer to accompany a person with an LTC if they so wish. A host of Charities have formalised this. The support may be social, e.g befriending, groups and/or instrumental e.g help with DWP application. The case for profferring ‘support’ is I think uncontestable. But many with LTC’s are wary of being defined by their condition. A dedicated support group may serve as a further reminder of their condition. They may decline involvement in such a group, but this is not necessarily a matter of avoidance, simply that they do not wish to define themselves or their world through the lens of their LTC. If psychological difficulties are grafted on to their LTC they may be even more likely to decline involvement with psychological therapists because it is an LTC type lens (a variant) through which they are being encouraged to view themselves and their personal world with perceived deleterious consequences. Arguably the LTC lens used in secondary care is likely to be less problematic than that used in IAPT. But the issue of centrality has not been systematically addressed with regards to LTCs. In the authors forthcoming work ‘Personalising Trauma Treatment: Reframing and Reimagining’ to be published by Routledge the issue of centrality [ Bernsten and Rubin (2006) (2007)] is addressed in detail with regards to trauma.
There is a distinction between long term physical health conditions and medically unexplained symptoms (MUS), the former are open to objective identification e.g diabetes, the latter are not. In considering the former the therapist feels that they are on solid ground, albeit that it is largely the domain of the medic, with whom there may be fruitful dialogue. But when it comes to MUS the therapist is in a fog, where are the signposts? There is no reference book for translating best practice with LTCs to clients with MUS. Because of this there is likely to be recourse to a powerful body insisting that the way forward is ‘x’ but without any evidence, a recipe for disaster. IAPT”s juxtaposition of LTCs and MUS, smacks more of pragmatism to secure maximum funding, rather than seriously addressing a clinical problem. Where is the therapeutic alliance in addressing MUS symptoms? What is the goal, What are the agreed tasks? Whither the bond, when the therapist covertly believes that the client is somatising and the client believes there physical symptoms are as real as toothache?
Carroll, S., Moss-Morris, R., Hulme, K., & Hudson, J. (2021). Therapists’ perceptions of barriers and facilitators to uptake and engagement with therapy in long-term conditions. British journal of health psychology, 26(2), 307–324. https://doi.org/10.1111/bjhp.12475
Berntsen, D., & Rubin, D. C. (2006). Centrality of Event Scale: A measure of integrating a trauma into one’s identity and its relation to post-traumatic stress disorder symptoms. Behaviour Research and Therapy, 44, 219–231. https://doi.org/10.1016/j. brat.2005.01.009
Berntsen, D., & Rubin, D. C. (2007). When a trauma becomes a key to identity: Enhanced integration of trauma memories predicts posttraumatic stress disorder symptoms. Applied Cognitive Psychology, 21, 417–431. https://doi.org/10.1002/acp.1290
the National Institute for Health Research has just published a review of studies of the psychological treatment of Medically Unexplained Symptoms (MUS) https://doi.org/10.3310/hta24460 [Leaviss J, Davis S, Ren S, Hamilton J, Scope A, Booth A, et al. Behavioural modification interventions for medically unexplained symptoms in primary care: systematic reviews and economic evaluation. Health Technol Assess 2020;24(46)] but in all studies the primary outcome measure was an improvement of symptoms on some psychometric test. No categorical measure was used such as no longer suffering from a ‘disorder’ such as fibromyalgia, irritable bowel syndrome or chronic fatigue syndrome post treatment. Likewise the Improving Access to Psychological Treatment (IAPT) markets its success on a change in score on psychometric tests the PHQ-9 and GAD-7. Further whether or not an IAPT clinician is to be subjected to a formal review of competence is based on a change of score on these measures. No categorical measure is used such as the proportion of cases of depression, panic disorder, generalised anxiety disorder etc that have lost their diagnostic status. Sir David Spiegelhalter the Statistician has coined the term ‘number theatre’ to describe the way in which the UK Government has promulgated statistics in relation to the Pandemic, but this drama been playing for years in the mental health arena. I am reminded of a line from a song somewhere, ‘I am more than a number in a little red book’, although intended for a very different context, it seems particularly apt for IAPT.
Number theatre in the mental health field has it seems been driven by the desire of psychologists to colonise. It is a reaction against the categorical labels employed by psychiatry. But the truth of the matter is both are needed simultaneously. To take a medical example, if I have a heart problem I need to know what the problem is but also my blood pressure today.
IAPT will topple because it pivots on psychometric tests. Inspection of of its’ main pillar, the PHQ-9 exposes a crumbling structure:
Client’s judgement of their functioning does not match changes on the PHQ-9 https://doi.org/10.3310/hta24460. Thus an IAPT therapist might report to his supervisor the ‘improvement’ on his/her clients score on the PHQ-9 and at the same time report that the latter said they are ‘the same old’. The overall judgement of the client is likely to be dismissed in favour of the alleged ‘moving towards recovery’ or ‘recovery’ on the PHQ-9.
In the initial validation study of the PHQ-9 by Kroenke and Spitzer it was not validated against a ‘gold standard’ that it was sufficiently different to to make it an acceptable diagnostic aid according to the AMSTAR
The findings of the progenitors of the PHQ-9 Kroenke and Spitzer were not replicated by independent researchers using a ‘gold standard’ diagnostic interview such as the SCID.
The diagnostic accuracy of an instrument depends very much on the prevalence of the disorder in which it was first evaluated. In the case of the PHQ-9 psychiatric outpatients in the United States. There is no reliable evidence (as assessed by a standardised diagnostic interview) on the prevalence of disorders amongst those attending IAPT (which include both self referrers and GP referrals). Thus the clinical utility of the PHQ-9 in this context is unknown.
The PHQ-9 is purportedly a measure of the severity of depression, but there is poor concordance between it and alternative measures of the severity such as the HAD i.e a person would be in a different category of severity depending on which measure is used.
5. The use of a psychometric test with a summary score assumes that each of the items (9 in the case of the PHQ-9) contribute equally to the total score. But this is implausible an item about suicidal ideation (item 9 on the PHQ-9) is likely to be more significant than an item about fatigue.
6. Two patients on the PHQ-9 could have the same score, but arising from one patient endorsing all intermediate scores whilst the second endorses several items at the highest score. The same score but arguably a quite different meaning.
7. The PHQ-9 assumes that is the frequency of a symptom that is the determinant of severity rather than the intensity.
8. Unless the mechanism by which a PHQ9 score is changed is known it cannot determined that an evidence based treatment was in fact used. Thus those getting a supposed ‘result’ may be more at fault than those acknowledging none response, the latter may simply be more honest.
These considerations on the PHQ-9 may not be prohibitive of its use, if employed in the context of a standardised diagnostic interview that has established the person has depression. But such an interview would likely also yield the presence of one or more coexisting disorders. The trajectory of these additional disorders would have to be tracked by other psychometric tests that are pertinent to the disorder. The idea that the PHQ-9 can stand alone as judge and jury on a client’s mental health is absurd.
However politicians, public health bodies and clinical commissioning groups like to be told that there is a simple solution to a problem and that they can make a difference by implementing the chosen solution. Enter stage right IAPT proclaiming ‘give the PHQ9 reduce it below 10, job done and woe betide any clinician who does not manage this routinely’. As an encore IAPT uses numbers e.g throughput of clients, waiting lists to placate politicians and funders. Exhaustion, numbing and detachment [burnout] are an inevitable consequence of these working conditions. No amount of self-reflection as advocated by Psychological Wellbeing Practitioner in the current issue of CBT Today, is going to make a real world difference. It is a shame that CBT Today has become IAPT’s comic.
my colleague Joan Crawford wrote the following letter to the Journal of Psychosomatic Research, it highlights that IAPT advises its’ clinicians not to use the term Medically Unexplained Symptoms (MUS). Her letter was rejected. But Prof Chalder, Improving Access to Psychological Treatments (IAPT) adviser on MUS and LTC’s (long term conditions) , regularly holds workshops using the MUS descriptor (see webcast for BABCP sponsored Workshop on June 8th 2020). Joan’s letter reads;
‘The systematic review into the use of language and relational issues during the patient-doctor interaction where there is medical uncertainty is welcome . However, there are flaws in the methodology and underlying assumptions within this paper that require closer examination.
Medically unexplained symptoms (MUS) were not clearly defined. A broad, assumptive approach was used which included: chronic fatigue syndrome, fibromyalgia and irritable bowel syndrome, without justification or criticism. These are all separately listed World Health Organisation medical conditions . Using MUS gives an illusion of medical respectability, which is ambiguous if not misleading. At no point was there recognition of controversy of the MUS approach or any engagement with extensive alternative literatures. While many routine tests may fail to find a specific underlying disease, it is misleading to assume; therefore, that no objective abnormalities can be identified.
In the UK, chronic pain (explained or unexplained by routine assessment), including fibromyalgia, is managed within the NHS via pain management programmes. This is under the rubric of The British Pain Society guidelines . Such an approach teaches patients the central sensitisation and dysregulation model of chronic pain. This science-based model encourages patients to pace, plan and prioritise tasks to maximise activity; set appropriate goals; minimise flare ups and to live well despite being in pain. At no point does the evidence suggest that their pain is medically unexplained, quite the opposite. Patients adapt well to this model. They improve their self-efficacy, reduce distress along with decreasing presentation at their GPs unnecessarily as they have the confidence to decide how to best manage themselves.
Taking the MUS approach has the potential to de-validate patients’ symptoms as described in this paper . Patients can erroneously be given the impression during the medical encounter, consciously or otherwise, that their symptoms and suffering are not of worth; that they are derived
from within themselves via a self-generated, autopoietic mechanism , which they have the power to overcome. For example, “MUS arise when benign bodily sensations, such as those resulting from normal variation, emotional disturbance or minor pathology, are selectively attended to and misinterpreted as evidence of illness ; the resulting changes in behaviour (e.g. reduced activity) and physiology (e.g. increased autonomic arousal) then create a vicious cycle that maintains symptom reporting.” . The apparent rarity of misdiagnosis is often cited as good reason to proceed with a MUS approach. Of note, Newton  reviewed 375 patients attending a CFS clinic in England and found that 40% of patients did not to have CFS. Caution is required.
What evidence does the practitioner have that their option is sound other than their own belief? Should the patient not return, does the doctor then conclude that the patient has been cured of a false belief? Or has the patient abandoned hope that their practitioner can help them? Deary’s cognitive behavioural model  is potentially self-blaming and shaming which can silence patients discouraging them from further medical interaction and emotional and social support. Patients’ can experience disbelief about their symptoms as an assault on their sense of self. This causes harm and unnecessary suffering. This can have tragic consequences for patients and their families.
Openly sharing the speculative MUS model in the clinical context would allow the patient to decide if it has face validity. Worryingly in the UK, IAPT clinicians are encouraged to not use the term MUS . This is duplicitous. Obfuscation here is dishonest and unethical . It is encouraging to note that, “healthcare providers are cautious when raising psychosomatic attributions”  as the evidence base for such is flimsy. The absence of good quality evidence-based objective, real world changes for psychological or behavioural interventions for MUS was omitted and therefore not subject to critical analysis . The paper does approach the importance of the psychosocial context; however, it fails to critically analyse the social and emotional consequences for the patient.
It is unfortunate that some doctors continue to have negative experiences. This may well be true for those who are not up to date in their knowledge. When current information is shared with patients, they are enlightened and appreciative of clinician’s honesty and skills.
There is a sense from this paper that clinicians should continue fear encounters with patients. Perhaps there is nothing to dread from such consultations if one approaches this with a sense of humility  and a science-based model and positive mindset. There needs to be honesty in the clinical and therapeutic environment. This needs to hold the tension with uncertainty, without the ethically dubiously, “subtle persuasive conduct”  imposing a blaming and shaming model on the patient due to lack of clinician resilience or knowledge . Share the model openly [4,5] and allow the patients to vote with their feet. Those who find it meaningful will stay. The key here may be to build healthcare providers’ resilience to cope with and tolerate uncertainty and ambiguity.
 I. Stortenbeker, W. Stommel, S. van Dulmen, P. Lucassen, E. Das, T. I. Olde Hartman, J. Psychosom. Res. 132 (2020).  World Health Organisation, International Statistical Classification of Diseases. https://www.who.int/classifications/icd/en/
 The British Pain Society, Guidelines for Pain Management Programmes for Adults (2013).  V. Deary, T. Chalder, M. Sharpe, The cognitive behavioural model of medically unexplained symptoms, Clin. Psych. Rev. 27 (2007) 781–797.  R. Brown, Explaining the unexplained, The Psychologist, 26 (12) (2013) 868-872.  J.L. Newton, H. Mabillard, A. Scott, A. Hoad, G. Spickett. The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same, J R Coll Physicians Edinb. 40 (2010) 304–307.  NHS IAPT Medically Unexplained Symptoms/Functional Symptoms – Positive Practice Guide, (2014).
 D. O’Leary, Ethical management of diagnostic uncertainty: Response to open peer commentaries on, “Why bioethics should be concerned with medically unexplained symptoms,” Am J. Bioethics. 18 (8) (2018) W6-W11.  K. Geraghty, M. Scott, Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified, BMC Psychol, 8 (13) (2020).’
in our paper published today in BMC Psychology, Keith Geraghty and I write of Improving Access to Psychological Therapies (IAPT) malpractice with MUS clients , see link https://doi.org/10.1186/s40359-020-0380-2
A series of seven core problems and failings are identified, including:
an unproven treatment rationale
a weak and contested evidence-base
biases in treatment promotion
exaggeration of recovery claims
under-reporting of drop-out rates
a significant risk of misdiagnosis
We concluded that:
There is a pressing need for independent oversight of this service, specifically evaluation of service performance and methods used to collect and report treatment outcomes. This service offers uniform psycho-behavioural therapy that may not meet the needs of many patients with medically unexplained health complaints. Psychotherapy should not become a default when patients’ physical symptoms remain unexplained, and patients should be fully informed of the rationale behind psychotherapy, before agreeing to take part. Patients who reject psychotherapy or do not meet selection criteria should be offered appropriate medical and psychological support.
compared to how people would have got on anyway if not referred to IAPT (in economist terms the appropriate counterfactual), the ‘added value’ has not been demonstrated. Yet most people receive a low intensity intervention such as computerised CBT, guided self help or groupwork.
I could find no independent outcome assessors involved in the randomised controlled trials of low intensity interventions that the NICE guidance largely relies on. Instead reliance has been placed on IAPT’s marking and marketing of its’ own homework.
In a review of randomised controlled trials published in 4 medical journals Kahan, Rehal and Cro (2015) only a quarter (26%) involved blinded outcome assessment. These authors write ‘Previous reviews have found that unblinded outcome assessment can lead to estimates of treatment effect that are exaggerated between 27% and 68%’ see link below:
But the position appears worse when it comes to psychological therapies with no reliable rcts for low intensity interventions, and with regards to high intensity interventions the few blind outcome assesments are clustered around depression, the anxiety disorders and PTSD. Since the millenium there has been a drift away from the use of outcome assessors, this makes research cheaper, it is much easier to massage statistics to give a positive hue, the originators of an intervention and those with a vested interest are given a free hand.
Researchers on IAPT [seee Bower et al (2013)] play fast and loose with Cochrane risk of bias tool, see link below:
Looked at from the perspective of independent outcome assessment the claims for low intensity interventions look spurious and the evidence base for high intensity interventions is more circumscribed than BABCP conferences or IAPT would suggest.
The IAPT Manual published last year recommends extension of the service to irritable bowel syndrome, chronic fatigue syndrome, chronic pain and medically unexplained symptoms not otherwise specified but makes no mention at all of the need for independent blind assessment of outcome, instead it suggests simply what self-report measures should be administered. See link below:
Yet another marketing opportunity, when we need real world answers, how many people said to an impartial observer that they were back to their usual selves after the intervention? how long did this last?
Rudolph had a very shiny nose, in a routine consultation with his GP, Dr Touchy-Feely, the latter said that it was medically unexplained and he could be referred/or refer himself to IAPT.
He replied that it was a long term physical condition and he didn’t think a psychological service was appropriate. The GP opined that he might have persistent somatic symptom disorder and entered this in his notes. . Later that day Rudolph had a telephone conversation with Father Christmas who wondered whether he could help him out that evening. Rudolph mentioned in passing his conversation with the GP. Father Christmas observed that everyone knew he had a very shiny nose and could on occasion feel left out or ridiculed but was this really a psychological problem, didn’t IAPT have enough to do with all the anxious and depressed people! Rudolph replied sheepishly, perhaps I should ring IAPT in the New Year, after all the GP is saying I have got persistent somatic disorder. Father Christmas replied Dr Touchy-Feely, does not know what evidence based criteria are for anything and added whimsically ‘he doesn’t even believe in me’.
The latest IAPT figures for August 2018 show 60.3% of clients attending attending less than 2 treatment sessions. Under the auspices of NHS England IAPT claims to offer NICE approved therapies for treating people with depression or anxiety but the typical recommended dosage of such therapies is 10 or more sessions! Casualties are strewn in ‘no-mans land’. The National Audit Office (NAO) rather than publish the results of its’ investigation has chosen to look the other way. Yesterday the NAO was very vocal on another Government Quango, Motability but mental disability appears not to be as deserving of critique as services for those with a physical disability. If 60% of physically disabled people were not enabled to get the vehicle they require, there would rightly be an outcry, yet the majority of IAPT referrals are expected to suffer in silence. The IAPT figures can accessed using the link below:
Notwithstanding this IAPT in its’ pilot projects is expanding ‘IAPT care’ into the medically unexplained symptoms (MUS) field (see link below). Despite the concept of MUS being jettisoned from DSM-5 [American Psychiatric Association (2013)] – in a radical departure from its’ predecessor DSM IV it cautions that it cannot be assumed that just because no physical explanation is proferred the problem must be psychological. Nevertheless IAPT in its report on integrated services comes up with an ‘MUS recovery rate’!
Says Will Self talking on Radio 4 this morning, a must listen on BBC i-player. He was distressed at his friend who had been sectioned, his visit to her on a locked ward resembled still, ‘One Who Flew Over the Cuckoo’s Nest’. When she questioned the appropriateness and mechanism of action of the drugs prescribed for her bipolar disorder the psychiatrist became defensive. After discharge no therapy was on offer.
He is absolutely right we do need good quality talking therapies but we have not got them, rather we have a 10% recovery rate for those undergoing treatment with IAPT http://journals.sagepub.com/doi/pdf/10.1177/1359105318755264. I very much doubt that IAPT or anyone has an evidence based psychological treatment for a person with bipolar disorder and it would be disingenuous to pretend we have. Nevertheless IAPT has trespassed into providing treatment for medically unexplained symptoms, which is an unfortunate precedent for claiming more than we can deliver.
Will Self makes the excellent point that we need small communities to support people like his friend. But it is very difficult to create them for people who are isolated, charities, churches etc do what they can but it is a tough road to make a real world difference
‘IAPT Talking Therapies All Glitz and No Substance?’ is the title of a Press Release from the Editor of the Journal of Health Psychology, Dr David Marks, The Press release reads:
‘The Journal of Health Psychology is calling for an urgent independent review of patient recovery rates
with the NHS ‘Improving Access to Psychological Therapies’ (IAPT) talking therapies programme.
A recent study by Dr. Michael Scott revealed that only one in ten mental health patients actually
Now JHP editor, Dr David F Marks, is calling for IAPT recovery rates to be closely scrutinized. He
wants solid evidence that patients who have recovered stay well over the long term.
Michael Scott’s study found that overall just 9.2% of patients recovered with IAPT therapies. There is
an enormous gap of 40% between these findings and IAPT’s claimed recovery figure.
The study’s recovery rates were: Post-Traumatic Stress Disorder – 16.2%, depression – 14.9%, other
mental disorders including anxiety – 2.2%.
Dr Scott, Consultant Psychologist and Expert Witness to the Courts, suggested “a pressing need to reexamine…the service”. IAPT’s economic model hinges on good recovery rates and high recruitment.
The contributors to this Special Issue of the journal, “IAPT Under the Microscope”, have all expressed
doubts about the veracity of IAPT’s recovery claims. They agree that there’s a need for an independent
assessment of the type that a drug treatment would require before being approved for use.
The theory is that better mental health will lead to fewer physical health problems so that patients will
need less care. High recovery rates should then yield the promised hefty ‘efficiency’ savings to the
physical healthcare budget that will pay for the IAPT service.
The IAPT spotlight is on patients with ‘medically unexplained symptoms’ (MUS) and ‘long-term
conditions’ (LTCs) such as diabetes and COPD. This expansion into areas beyond its already
questionable expertise is likely to be clinically risky. Experts and patients are worried about the motives behind this and concerned that a mental health diagnosis will allow providers to restrict access to healthcare and other benefits. Can these therapies really reduce patients’ physical problems and their need for care, or is this an NHS version of a ‘hostile environment’?
The programme continues to grow as more local therapy services are rolled out across England. IAPT
aims to enrol over a million patients per year but the system is already creaking under the strain.
In his Editorial, Dr Marks proposes an open debate about England’s flagship IAPT project that has so
far cost the taxpayer around £1 billion. He calls for an independent, expert review to determine if IAPT
is likely to reap the promised rewards or asks if is it all glitz and no substance?
Notes to editors
Marks, D.F. (Ed.) (2018). “IAPT Under the Microscope” published online and in print on 26 July 2018.
http://journals.sagepub.com/home/hpq [see copy attached to email]
Scott, M.J. (2018). Improving Access to Psychological Therapies (IAPT) – The Need for Radical
Reform. Journal of Health Psychology, http://journals.sagepub.com/doi/full/10.1177/1359105318755264
Dr Michael J Scott, author of the IAPT study, is available at: 07580 644 038
Dr David F Marks, Editor of the Journal of Health Psychology, is available at: 07930 753 206 ;