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

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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I thought you were scheduled to be engaged with your domesticals this weekend @Dx Revision Watch???

Oh yes, and cake, too.

But consider the benefits of accepting the challenge of multi-tasking, of fostering behaviours embedded in valued life directions: the psychological resilience, the validation of self...the opportunity to explore soul midwifery while the mixer's going.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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NICE appears to have updated the PATHWAYS document:

Chronic fatigue syndrome myalgic encephalomyelitis overview


in December.

I'm not sufficiently familiar with the previous version to know if any text of significance has been updated.


http://pathways.nice.org.uk/pathways/chronic-fatigue-syndrome-myalgicencephalomyelitis

Pathway last updated: 21 December 2016

"Shared decision-making should take place during diagnosis and all phases of care."

"Be aware that – like all people receiving care in the NHS – people with CFS/ME have the right
to refuse or withdraw from any component of their care plan without this affecting other aspects
of their care, or future choices about care."

"Recognise that the person with CFS/ME is in charge of the aims and goals of the overall
management plan. The pace of progression throughout the course of any intervention should be
mutually agreed."

"Management of severe CFS/ME is difficult and complex and healthcare professionals should
recognise that specialist expertise is needed when planning and providing care for people with
severe CFS/ME."

"Offer people with severe CFS/ME a summary record of every consultation because of their
cognitive difficulties."


Copy attached

PDF: https://pathways.nice.org.uk/pathways/chronic-fatigue-syndrome-myalgic-encephalomyelitis/chronic-fatigue-syndrome-myalgic-encephalomyelitis-overview.pdf
 

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  • NICE CFSME Pathway.pdf
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Countrygirl

Senior Member
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The Pathways document is much better than I would have thought. Certainly an improvement on the usual medical opinion here of the 'ME doesn't exist................it is just a label we give to people who are mentally ill and if you mention it you will be treated unkindly............... ' brigade

It might be wise to print it off and take it to every appointment and put it in front of them when given the brush off.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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UK
Some extracts from the July 2014 document


https://www.uea.ac.uk/documents/246...ide-.pdf/ac806084-4058-4a2f-89f9-17d04eff6a3b

NHS IAPT

Medically Unexplained Symptoms/Functional Symptoms

Positive Practice Guide

July 2014

1. Background


1.1 Medically unexplained symptoms or syndromes (MUS) is a term commonly used to
describe physical symptoms which cannot be explained by disease specific, observable
biomedical pathology. The symptoms can be long-lasting and can cause significant
distress and impaired functioning.

1.2 These symptoms constitute a clinically, conceptually and emotionally difficult area to
tackle, with clinical presentations varying greatly, from people who regularly attend
GP surgeries with minor symptoms to people with recognised functional syndromes
(see section 2) such as chronic fatigue syndrome who can have severe enough
symptoms to be bed- bound.

2.3 The IAPT MUS Task and Finish group strongly advises that when engaging or treating
patients, the term MUS is not used. The experience of experts working in this field is
that where possible patients should be given a specific diagnosis of a syndrome
which describes their central symptom(s) without inferring that the aetiology is
psychological. Common syndromes include:

- Fibromyalgia
- Irritable Bowel Syndrome
- Chronic Fatigue Syndrome
- Tempromandibular Joint (TMJ) dysfunction
- Atypical facial pain
- Non-Cardiac l chest pain
- Hyperventilation
- Chronic Cough
- Loin Pain haematuria syndrome
- Functional Weakness / Movement Disorder
- Dissociative (Non-epileptic) Attacks
- Chronic pelvic pain/ Dysmenorrhoea

2.4 Many of these conditions have published diagnostic criteria which can be used in
diagnosis.

2.5 Other terms in use which appear more acceptable to patients include persistent
physical symptoms or functional syndromes/symptoms (FS)8. The term “functional”
here is used because it is assumed that the disorder is one of function, which may be
physical and/or psychosocial function, rather than anatomical structure. Sharpe9
likens this distinction to a car that needs tuning rather than a car which has
mechanical damage. More recently, physiologically explained symptoms have also
proposed as an alternative. For the rest of this paper we will refer to functional
symptoms or syndromes (FS) rather than MUS...

3.6.2 IAPT clinicians work as part of a multi disciplinary team in acute services or
within an interface primary care team. Alternately, IAPT clinicians linking with clinical
health psychologists and/or liaison psychiatrists in Acute Trusts (supervision,
consultation, training) in order to improve communication and movement through
the pathway. In this model patients with IBS would be treated within
gastroenterology, fibromyalgia in Rheumatology, non-cardiac chest pain in
Cardiology etc. The advantage here is that psychological treatment is part of
standard care package which can be offered to all patients in need presenting to a
secondary care service. It also ensures integration in the psychological and physical
care of these patients.

3.6.3 IAPT practitioners trained in models of LTC/MUS could also provide training
and supervision to specialist and practice nurses, physiotherapists and occupational
therapists in low intensity techniques. This could include providing primary care and
acute services with relevant information sheets which provide psychoeducation for
patients on the nature of their symptoms, the prevalence of these symptoms and
what normal test results mean.

3.6.4 IAPT clinicians working alongside specialist services already set up as multidisciplinary
teams to treat these conditions e.g. CFS or pain services.

4. Benefits of psychological therapies

4.1 There is no specific NICE guidance for treating medically MUS or FS. There are,
however, NICE guidelines for treating IBS and CFS. There are also relevant Cochrane
reviews summarizing treatment effects for different FS.

4.2 Reattribution therapy has been a popular recent treatment option for people with FS,
particularly in primary care but a recent review suggests this approach is not
particularly effective.

4.3 Currently CBT and graded exercise therapy (GET) have the strongest evidence as
effective treatments for FS. There are also smaller trials of other psychological
approaches such as Interpersonal Therapy, Acceptance and Commitment Therapy
(ACT) and mindfulness therapy which suggests these approaches may also be
beneficial.

4.4 CBT and GET are based on a CB behavioural formulation of FS which is briefly
summarized below.

Understanding FS from a Cognitive Behavioural Perspective

4.5 Functional syndromes (FS) are best explained in terms of a multifactorial
biopsychosocial model10. One biopsychosocial model commonly used to guide
therapeutic approaches in this area is the cognitive behavioural (CB) model which
incorporates predisposing, precipitating and perpetuating factors11. This model
comprises biological, affective, behavioural and cognitive elements of the illness. The
fundamental assumption of a CB model is that the perpetuating domains interact to
maintain symptoms, disability and distress, and that change in one domain will effect
change in the others. What should perhaps be highlighted in the application of this
model to FS is that this constitutes a previously undescribed disease mechanism, one
which produces and/or maintains physical symptoms in the absence of either overt
physical pathology or psychopathology. The basic hypothesis at work here is that of a
systemic dysregulation which becomes self perpetuating12.

4.6 For example, evidence suggests that predisposed people may be highly achievement
orientated, basing their self-esteem and the respect from others on their abilities to
live up to certain high standards. When these people are faced with precipitating
factors which affect their ability to perform, such as a combination of excessive stress
behaviour leads to the experience of ongoing symptoms which may be more closely
related to pushing too hard than to the initial insult or injury. However, in making
sense of the situation, patients attribute the ongoing symptoms to the original trigger.

The common response to an acute illness is to rest. However, reduced activity
conflicts with achievement orientation and may result in bursts of activity in an
attempt to meet expectations. These periodic bursts of activity inevitably exacerbate
symptoms and result in failure, which further reinforces the belief that they have a
serious illness. As time goes by, efforts to meet previous standards of achievement are
abandoned. Patients become increasingly distressed by their symptoms and
increasingly accommodate to their illness. This accommodation to the illness and
distress reinforces the symptoms through physiological changes related to poor sleepwake
cycle, lack of a daily routine and autonomic arousal with consequent insomnia.
This results in chronic disability. Three prospective studies of the development of IBS,
CFS and post-concussion syndrome after acute infection or injury, provide sound
evidence for this model in three distinct functional syndromes13, 14, 15.

4.7 The CB model needs to engage the patients in the therapy process but also obtain the
best outcome for patients. Although many patients presenting with MUS have high
levels of distress, treatment which focuses on reducing the severity of the symptoms
or the acceptance of symptoms, and reducing the disability afforded by the symptoms
often results in concomitant reductions in distress. Evidenced based models used in
CBT approaches for these patients have distinct differences to the protocols used for
treating people with a primary anxiety or depressive disorder.

4.8 Another simpler approach is to encourage a gradual return to previous activities, to
reverse the changes secondary to inactivity. Such graded activity approaches are
effective in helping patients with various functional syndromes to recover their health.

5. Removing barriers to access

5.1 People experiencing FS often face a number of barriers that prevent them from
having access to appropriate treatment including psychological therapies

5.2 As discussed under terminology, the IAPT MUS Task and Finish group suggest that
health professionals and IAPT practitioners omit the term MUS from their
vocabulary, in order to better engage patients, by referring instead to “functional
symptoms” by their name, or to “persistent physical symptoms”...

5.3 GPs and other healthcare professionals may also prevent people who are
experiencing FS from accessing services providing psychological therapies. GPs and
other health professionals may:

- Have time constrains in their surgeries which may not be sufficient for them to
diagnose FS effectively;
- Recognise the FS but fail to recognise that they can be effectively treated by
psychological therapies or other treatments;
- Believe that identifying, investigating and treating any physical health problems
are a higher priority than offering CBT based treatment for managing symptoms
and disability.
- See people with FS not having symptoms ‘all in the mind’ and not deserving of
treatment.

5.4 People experiencing FS may not receive psychological therapies because they may:

- Believe they have physical health problems only and can’t understand how a
psychological approach to symptoms may help
- Have a fear of being stigmatised by other people’s attitudes to receiving
psychological treatment
- Have a belief that offering a psychological approach legitimises their symptoms.

6. Engagement

6.3 The venue or location of an IAPT service should be considered when looking to break
down barriers for individuals who are experiencing FS (see section 3 and figure 1 on
referral pathways) MUPS. With many patients believing their symptoms are entirely
physical problems, a service that is located or embedded in a physical health
framework may encourage engagement, i.e. within a pain clinic, part of a Clinical
Assessment Service or Intermediate Clinical Assessment Team for musculoskeletal
problems.

------------

Acknowledgements

Membership of the IAPT Medically Unexplained Symptoms Evaluation Task and
Finish Group (2012-13)


Name Role

Prof Rona Moss-Morris (Chair) Professor of Psychology as Applied to Medicine,
Institute of Psychiatry (IoP), King’s College London.
IAPT National Advisor to LTC/MUS

Prof Trudie Chalder Professor of Cognitive Behavioural
Psychotherapy, IoP, King’s College London Chair BABCP

Dr Marta Buszewicz General Practitioner and Senior Clinical Lecturer
in Primary Care, University College London

Pam Stewart Chair of Fibromyalgia Association, UK

Professor Lance McCraken Professor of Behavioural Medicine, IoP, King’s
College London Clinical Psychology Lead INPUT, GSST.

Dr Brian Rock Consultant Clinical Psychologist-Tavistock &
Portman NHS Foundation Trust

Dr Jeremy Gauntlett-Gilbert Senior Clinical Psychologist – Royal National
Hospital for Rheumatic Diseases Clinical health lead for the Division of Clinical
Psychology / British Psychological Society

Professor Myra Hunter Professional Lead for Clinical Health Psychology-
SLaM Professor of Clinical Health Psychology, IoP, King’s College London

Janet Wint Project Manager, IAPT LTC/MUS (2012/2013)

Dr Jon Stone Consultant Neurologist and Honorary Senior Lecturer Dept Clinical Neurosciences Western General Hospital Crewe Road Edinburgh

Dr Charlotte Feinmann and Dr Amrit Sachar
Liaison Psychiatry Faculty of Royal College of Psychiatrists

Additional feedback and comments provided by:

Name Role

Professor Peter White
Professor of Psychological Medicine, Centre for Psychiatry, Wolfson Institute of
Preventive Medicine, Barts and The London School of Medicine and Dentistry

Dr Alison Salvadori Clinical Health Psychologist in conjunction
with the MUS project board for the Berkshire Pilot
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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A 2015 MUS paper I've just skimmed refers to functional symptoms as "FUS".

Had they used "Functional unexplained symptoms and syndromes" or

"Functional unexplained somatic symptoms"

they could have used the acronym

FUSS

or

"Persistent intrusive somatic symptoms"

PISS
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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The paper I flagged up several pages ago for which only the Abstract appeared to be available, can be found here as a Manuscript Draft, including "Detailed Response to Reviewers":

Clinical outcomes from The BodyMind Approach™ in the treatment of patients with medically unexplained symptoms in primary health care in England: Practice-based evidence


Corresponding Author: Prof. Helen Payne, MPhil; PhD

http://researchprofiles.herts.ac.uk/portal/files/10122066/AIP_D_14_00118R2_3_.pdf

and the paper as published here:

https://www.researchgate.net/profil...d_evidence/links/565ae54f08ae4988a7ba6094.pdf
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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A blog for GPs

The Hot Topics Blog

http://nbhottopics.blogspot.co.uk/2013/02/medically-unexplained-symptoms.html

Tuesday, 26 February 2013
Medically Unexplained Symptoms

(...)

What guidance is out there to help me manage these patients?

Excellent guidelines for GPs for MUS were developed in 2011 by the Forum for Mental Health in Primary Care, hosted by the RCGP and RCPsych.
http://www.nmhdu.org.uk/silo/files/...als-on-medically-unexplained-symptoms-mus.pdf




But, I had a patient with MUS who then turned out to have Addison’s disease?

"We all have these cases, and living with this uncertainty and seeing how things evolve over time is of course central to general practice. Long-term follow up studies suggest that 4 to 10% of this patient group go on to have an organic explanation for their symptoms. Keep an open mind and be willing to re-assess."

...NB Since this blog there have been new evidence-based guidelines on MUS published, see
Dutch College of GPs MUS Guideline 2013 (English version)
 
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TiredSam

The wise nematode hibernates
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Germany
A 2015 MUS paper I've just skimmed refers to functional symptoms as "FUS".

Had they used "Functional unexplained symptoms and syndromes" or

"Functional unexplained somatic symptoms"

they could have used the acronym

FUSS

or

"Persistent intrusive somatic symptoms"

PISS
Faulty Functional Symptoms would give FFS.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
But, I had a patient with MUS who then turned out to have Addison’s disease?

"We all have these cases, and living with this uncertainty and seeing how things evolve over time is of course central to general practice. Long-term follow up studies suggest that 4 to 10% of this patient group go on to have an organic explanation for their symptoms. Keep an open mind and be willing to re-assess."

It's not alright for an Addison's patient to be left untreated. They seriously need Florinef, not a good chat.

Oh, that's OK then, keep an open mind and re-assess. No, do the right thing and assess to begin with.