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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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http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0016/150181/PRO-14-26-08.pdf

"The proposed review will use a broad definition of MUS, which encompasses all of the above definitions, so that the term MUS will be used to refer to any of the following definitions:

i) the occurrence of physical symptoms in the absence of clear physical pathology,
ii) to functional somatic syndromes such as CFS, IBS or fibromyalgia,
iii) the DSM-IV (and more recently V) somatoform disorders and
iv) somatoform disorders that have their own diagnostic criteria e.g. bodily distress syndrome.

The reason for this broad definition is that there is clear overlap between these groups and as yet no consensus as to the validity of one syndrome (i.e. MUS) versus many (i.e. the various FSS). Whether patients are diagnosed with MUS as opposed to a more specific diagnosis can be an artefact of clinician or researcher preference rather a defining feature of the included patients (Fink & Schröder, 2010, Wessley et al., 1999, Shorter et al, 1995)."

(...)

"Given that the term ‘medically unexplained symptoms’ may be used to cover a broad range of health conditions, it is expected that the clinical effectiveness review will identify studies covering a range of populations. As different interventions may work differently depending on the type of symptoms, separate models will be developed for each population identified within the clinical effectiveness review. The population covered by each model will be based on clinical advice regarding the differences and similarities between the populations included within the identified clinical effectiveness studies. If it becomes clear that it is not feasible to conduct a de novo economic evaluation for each separate population then de novo modelling with be prioritised based on the current extent of uncertainty over cost-effectiveness, the likelihood that further economic modelling would reduce that uncertainty and the size of the population likely to receive the intervention. This decision will take into account the evidence identified during the review of published cost-effectiveness analyses, the estimates of effectiveness, and uncertainty surrounding those estimates, based on the clinical effectiveness review, and information from the clinical advisers on the likely impact of the intervention on costs and benefits across the population likely to receive the intervention."

"Where data allows we will estimate cost-effectiveness compared to the current standard of NHS care in that population (usual care). Where there is evidence for more than one type of intervention within a particular population then incremental cost-effectiveness will be estimated to determine the most cost-effective intervention for that population across a range of willingness to pay thresholds."

 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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@charles shepherd

http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42015025520
Medically unexplained symptoms (MUS): primary care intervention
Joanna Leaviss, Glenys Parry, Matt Stevenson, Andrew Booth, Alison Scope, Sarah Davis, Shije Ren, Anthea Sutton, Peter White, Rona Moss-Morris, Marta Buszewicz

"Dissemination plans
We will create links and engage with patient support groups that currently exist for syndromes such as CFS, Fibromyalgia, and Irritable Bowel Syndrome (IBS) in order to publicise the on-going work, as well as link in with professional bodies..."​


@charles shepherd

Has the MEA been approached at any point for engagement during the course of this review study (Anticipated or actual start date 01 September 2015; Anticipated completion date 28 February 2017) by any of the review study's researchers?

Are you aware of any national or regional patient support groups that have been approached during the course of this review study?
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Via Marc-Alexander Fluks

Source Nottingham Post
Date: January 17, 2017
Author: Matt Jarram
URL:
http://www.nottinghampost.com/patie...jury-service/story-30065038-detail/story.html

Brain injury patients call for more consultation over plans to
decommission services

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

Patients gathered at Gedling Civic Centre on Tuesday, January 17, and
argued that little consultation had taken place with service users over
plans to decommission a number of services. (...) Clinical commissioning
groups across greater Nottingham have carried out reviews of services to
look at whether the best outcomes for patients, and best value for
money, were being achieved.

Now, in the face of 'mounting financial pressure', proposals have been
put forward to transfer a number of services currently run by Nottingham
University Hospitals (NUH) to 'providers in a community setting' which
includes in their own homes.

Services that are being decommissioned and put out to tender are Chronic
Fatigue Syndrome service (CFS)
, pain services, renal home visiting, Motor
Neurone Disease (MND) co-ordinator, geriatric day care, and neuro
assessment service/brain injury service/neuro re-ablement community
neuro-rehabilitation.

Dr James Hopkinson, clinical lead for Nottingham North and East CCG,
told patients and their families: 'Decommission does not mean stopping
these services. Services are being recommissioned. The only change is it
will be delivered in a community setting. We are being guided by the NHS
that services in the community and closer to home are the way forward.'


Samantha Walters, chief officer for the CCG, defended claims that the
trust had failed patients. She said: 'Commissioning is the job that we
do. We provide services from a number of providers and continuously
review that. It has not failed. It is about securing services and
looking for the best value for money.'

A consultation on the changes will be running until February 5. People
can send comments to the Patient Experience Team on
pet@nottinghamnortheastccg.nhs.uk or write to Freepost RTHU-JLJL-LGLT,
Patient Experience Team, South Nottinghamshire CCGs, Civic Centre, Arnot
Hill Park, Arnold, Nottingham, NG5 6LU. If you would like a paper copy
of the proposals please call 0800 028 3693 (option 2).

(c) 2017 Local World

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

Will be interesting to see who the successful tender for the CFS Service is.
Nottingham West was one of the 22 "Early Implementers" for integrated IAPT services.

"Nottingham West
Nottingham West aim to build on their experience of integrating IAPT and services for people with long term conditions. The existing IAPT service works closely with people with long term conditions, older people and those most at risk of hospital admissions. They aim to expand to work with diabetes/ pre diabetes, obesity, chronic pain management, eczema and psoriasis. The integrated service will be operated as part of the adult integrated community services local care team."
 
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77
Under "population" it says
Populations with FSS will be included, e.g. IBS, CFS, fibromyalgia. For somatoform disorders, diagnosis should be made by formal clinical interview and should meet criteria according to DSM IV or V, or ICD 9 or 10. Somatoform disorders will include somatisation disorder, somatoform disorders, pain disorders, persistent physical symptoms, bodily distress syndrome, bodily distress disorder, functional somatic syndrome, medically unexplained syndrome.

Please be aware of what they are doing. Not only are they trying with the non-diagnosis "MUS" to lump together all diseases that are not yet fully explained, there is a clear effort to categorize them onder "mental and behavioral disorders" catogories in the DSM or ICD.....

their interventions of course include CBT/GET...

Welcome to the BPS model,
Yes we can have international experts, and IOM/NIH acknowledging this is a chronic complex multi-system disease, and ! BPS proponents labeling the same disease as MUS, moving towards placing these categories under psych. classifications

the BPS model/hypothesis gave them a clever rethoric which they have perfected over the years, moving along with the clear biomedical evidence that they cannot deny, in which there is a role for them no matter what. You can find several presentations on the internet where doctors/GP's are trained to avoid certain phrases like psychosomatic, trying to use the BPS approach, steering patients towards CBT/GET.

Please understand they are not saying CFS of ME are psychosomatic/mental, they will avoid that and say, we need to stop focussing on the difference between mental and physical (it all works together (bio-psycho-social) (even if there is no proof of that in ME), stop focussing on what got you ill, but try to help you feel better again.
There will try to acknowledge what the patient is feeling is real, and in the past there might have been a virus, or a physical compaint but in their veiw there are other factors now perpetuating the illness (again no proof for this in ME, see recent article Mark Vink), by which they mean, changing illness beliefs, and behavior. And we are back again with CBT/GET.

This is not going away by itself, for the Wessely-school in Europe has invested in this for decades.Where are all the patient organisations?

this is why we need to stand up and say ME is not MUS (or MUPS)
Please help us be heard and sign and share this link,
https://petities.nl/petitions/me-is...e-to-the-advisory-report-assignment?locale=en
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Please be aware of what they are doing. Not only are they trying with the non-diagnosis "MUS" to lump together all diseases that are not yet fully explained, there is a clear effort to categorize them onder "mental and behavioral disorders" catogories in the DSM or ICD.....

their interventions of course include CBT/GET...Welcome to the BPS model


We are aware.*

Question is, when are our UK national patient organizations going to wake up and smell the coffee?

*I have been reporting, via Dx Revision Watch, on DSM-5's SSD and on the development of ICD-11 since early 2010 and co-authored several papers and commentaries on DSM-5's SSD since 2012.
 

Countrygirl

Senior Member
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We are aware.*

Question is, when are our UK national patient organizations going to wake up and smell the coffee?

*I have been reporting, via Dx Revision Watch, on DSM-5's SSD and on the development of ICD-11 since early 2010 and co-authored several papers and commentaries on DSM-5's SSD since 2012.

Yes, for nearly 40 years in my case.

Wessely's plans became evident in this country by the early to mid '90s. We have been fighting the damage he inflicts on this patient population ever since.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Location
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This is not going away by itself, for the Wessely-school in Europe has invested in this for decades.


As Countrygirl has said, here in the UK, we have lived at the sharp end of this for many, many years.

Goldberg*, Wessely, Sharpe, White, Chalder, Deary, Wearden, Moss-Morris, Creed and numerous others I cannot be bothered to list have been very firmly embedded in, and shaped policy for NHS service provision for over 20 years. They shaped the CFS services that rolled out in 2007 and the management strategies offered by the majority of them.

They have been in receipt of the lion's share of research funding. They still receive most of the funding.

Moss-Morris and others are acting as advisors to the integrated IAPT programmes that have already rolled out in some areas, with calls for bids for commissioning additional services in other parts of the country.

They have been instrumental in the launching of Persistent Physical Symptoms services.

Some of them act as advisers to DWP.

Petitions have their place in raising awareness and I wish you luck with yours and hope that it triggers whatever action and changes you are striving for at government and health service level.

So firmly embedded are they at the political level and within health policy, it is going to take more than a petition to bring about radical change within the NHS.

Please understand that although the expansion of integrated Improving Access to Psychological Therapies (IAPT) services in some areas to include LTCs, MUS and CFS may be new to some people on these forums, many forum members are quite aware of what has been happening in the UK for years that has fed into this.


*Early Intervention in Psychiatry: Early Intervention of Nearly Everything for Better Mental Health 14 Nov 2014, by Peter Byrne and Alan Rosen

Page 165 Medically unexplained symptoms

https://books.google.co.uk/books?id=1LblBQAAQBAJ&pg=PA165&lpg=PA165&dq=term model david goldberg&source=bl&ots=vW3GAH06Ia&sig=PhEO6V8WoiQq4V_Z829Z7eK-R3o&hl=en&sa=X&ved=0ahUKEwiy7oypiczRAhWMChoKHasHCD8Q6AEIMTAE#v=onepage&q=term model david goldberg&f=false
 
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Countrygirl

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Petitions have their place in raising awareness and I wish you luck with yours and hope that it triggers whatever action and changes you are striving for at government and health service level.

So firmly embedded are they at the political level and within health policy, it is going to take more than a petition to bring about radical change within the NHS.

This is so frustrating! There are so many of us and yet we seem unable to make a significant impact because most of us are so ill.

I cannot get away from the image of chaining ourselves to the railings of No 10, but there must be a better way to stop the UK medical profession abusing the sickest patient group. Isn't there?

Now we are being subjected to the latest nonsense to be peddled by the psychobabblers and our GPs seem too dense to realise that it is ............to be highly technical here :rolleyes:............cobblers.

What can we do to stop this nonsense?
 

Countrygirl

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At a lecture in May 1994, Wessely publicly denied the existence of ME, referring to it as nothing but a “belief” and a “myth”. He seemed to enjoy mocking very sick people and the ensuing mirth of his medical audience; he even named and was openly scornful of a severely affected woman (who later died from ME)

In connection with my above reference to Wessely.

This is a quote from Margaret William's latest document dated December 2016.

http://www.margaretwilliams.me/2017/quotable-quotes-continued.pdf
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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http://www.meactionuk.org.uk/wessely_speech_120594.htm

slater1.png


NB: ICD-10 was endorsed in May 1990 by the Forty-third World Health Assembly. Wessely gave the Slater lecture in May 1994.

ICD-10 contains no definitions and no statements on the use of PVFS, BME or CFS and no statements on preferred term.

The term "chronic fatigue syndrome" is not listed twice in ICD-10.

In ICD-10, it remains an index term. It appears in ICD-10 listed only in Volume 3: The Alphabetical Index, where it is coded to G93.3 Postviral fatigue syndrome.

In ICD-10 Volume 1: The Tabular List, Chapter V Mental and behavioural disorders there is a "fatigue syndrome" listed under F48.0 Neurasthenia but there is no "chronic fatigue syndrome" under any chapter of the Tabular List.

For ICD-11 and ICD-11 PHC (Primary Care version), the term "Neurasthenia" is proposed to be retired.

NICE CG53 uses the dual term, "CFS/ME".
 
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Countrygirl

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“Several years ago I was lecturing in British Columbia. Dr Wessely was speaking and he gave a thoroughly enjoyable lecture on M.E. and CFS. He had the hundreds of staff physicians laughing themselves silly over the invented griefs of the M.E. and CFS patients who according to Dr Wessely had no physical illness what so ever but a lot of misguided imagination. I was appalled at his sheer effectiveness, the amazing control he had over the minds of the staid physicians….His message was very clear and very simple. If I can paraphrase him: “M.E. and CFS are non-existent illnesses with no pathology what-so-ever. There is no reason why they all cannot return to work tomorrow”.

2011

Wessely was paid by the insurance agency to present this lecture, which resulted in several very sick ME patients having their payments withdrawn.

Witnessed and reported by Dr Byron Hyde
 

Countrygirl

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The name of Professor Peter White appears as the investigator-in-chief of the evidence that supports the roll out of the IAPT programmes mentioned above.

Professor Peter Denton White OBE In 2004, Professor Peter Denton White was awarded an OBE for “services to medical education”; notices circulating at the time proclaimed him as leading the research into “CFS/ME” and said his OBE was “a well-deserved honour and acknowledgement of his contribution to work on CFS/ME”.

He was born in November 1952: aged only 64, he suddenly retired from clinical practice just before he was compelled by a court order to release the raw data from the PACE trial, so any investigation by the General Medical Council for alleged professional misconduct is unlikely to be pursued, but is he guilty of misfeasance in public office?

According to the Crown Prosecution Service (CPS) website, misfeasance in public office is a cause of action in the civil court against the holder of public office, the allegation being that the office-holder has misused or abused their power: such misuse or abuse is an affirmative act that causes harm to another party without reasonable justification. The NHS is a State body as it provides public health care, so this matter is one in which the public has a significant interest.

Facts to be considered 1. Peter White has used his own money, as well as charitable money and public money, in order to lobby support for his belief that ME/CFS is a psychobehavioural disorder that can be overcome through “cognitive restructuring” and graded aerobic exercise

2. he has egregiously used large sums of public money (£250,000) to prevent the disclosure of data that would falsify his belief

3. for nearly 30 years, he has ignored evidence that disproves his belief, including evidence from his own clinical trials

4. he has failed to correct errors of fact after being alerted to them

5. he has consistently failed to disclose significant financial, institutional and ideological conflicts of interest

6. he has been in breach of his NHS contractual obligations in that he has persistently ignored mandatory directives and has wilfully encouraged other clinicians to do the same

7. as a consequence of his actions:

 money which should have been used for biomedical research into the aetiology of ME/CFS has been diverted to fund studies into therapies which were already known to be ineffective and even harmful

 patients have been stigmatised as sociopaths and malingerers who refuse to accept that they have a behavioural disorder

 patients have been denied financial support from private insurers for whom Peter White and his colleagues work (for example, he was Chief 38 Medical Officer for the giant re-insurer Swiss Re and was also CMO to Scottish Provident) and from the Department for Work and Pensions (where he was lead advisor on “CFS/ME” and was a prominent member of the group who re-wrote the chapter on “CFS/ME” in the DWP’s Disability Handbook used by Examining Medical Practitioners, by DWP decision-makers and by members of the Appeals Services Tribunals); he also works for the US Centres for Disease Control, and for defendants in legal actions (BMC Health Services Research 2003:3:25)

 patients with ME/CFS have been wrongfully sectioned and detained under the Mental Health Act

 clinicians who oppose his views about ME/CFS have been sanctioned by the General Medical Council and prevented from working.

http://www.margaretwilliams.me/2017/quotable-quotes-continued.pdf
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Something to consider:

The charity Mind.org has been very active in the area of increased access to psychological services.

There is a coalition - the We need to talk coalition which includes, Mind, Mental Health Foundation, Relate, British Psychoanalytical Council, UKCP, BACP, BPS, Young Minds and the Royal College of Psychiatrists.

"The We need to talk coalition is a group of
mental health charities, professional organisations,
Royal College and service providers that believe
in the effectiveness of psychological therapy.
Together, we are calling for the maintenance and
development of these treatments on the NHS.
We want the NHS in England to offer a full range
of evidence-based psychological therapies to
all who need them within 28 days of requesting
a referral."


MInd.org's latest year's Income and Expenditure figures on the Charity Commission site:

  • Income £39.9M
  • Spending £39.7M

Almost 40 times the income and expenditure of Action for M.E. (our largest income org.)

An income of £40 million can buy you a hell of a lot of political lobbying and that's without the assistance of a coalition of half a dozen other orgs and professional bodies.

So yes, I am concerned that MEA and AfME have not taken more interest in the expansion of delivery of IAPT services to MUS and in some areas, CFS. This has been known about since at least 2014/15.

However, neither org has anything like the spending power of organizations like MIND.org for lobbying government.
 
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