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

[Countrygirl]

http://forums.phoenixrising.me/inde...bt-and-get-are-ineffective.48764/#post-802937

Useful ammo!

 

[trishrhymes]

Is the Countess of Mar aware of this epidemic of nonsense spreading around the country?

I think of the splendid letter she wrote to the BBC. I wonder whether she could write a letter to the chief medical officer, the head of mental health in the NHS, the head of the NHS, NICE, all the clinical commissioning groups in the country etc. Any letter could be signed by as many medical people and ME charities as can be gathered to add clout.

Much as I appreciate David Tuller's skills, I think any letter or other approach needs to come from someone with a senior position within the UK, otherwise the powers that be will simply ignore it.

Once such a letter is in circulation, we can then do our best to raise awareness of it, and use it as ammunition in our own individual situations, for example contacting our local clinical commissioning groups and gp practices to alert them to the fact that this junk they are having foisted on them is not evidence based or effective for ME.

 

[Dx Revision Watch]

There is no "umbrella" term for all of these illnesses.

The term "functional somatic syndromes" has been in use as an umbrella term for a collection of conditions and illnesses since before 1999, in the US, UK and in other countries.

Two of the early users, here:

A US paper:

https://www.ncbi.nlm.nih.gov/pubmed/10375340

Ann Intern Med. 1999 Jun 1;130(11):910-21.
Functional somatic syndromes.
Barsky AJ1, Borus JF.


A UK paper:

https://www.ncbi.nlm.nih.gov/pubmed/10489969

Lancet. 1999 Sep 11;354(9182):936-9.
Functional somatic syndromes: one or many?
Wessely S, Nimnuan C, Sharpe M



A search for the term on PubMed will bring up over 180 papers:

https://www.ncbi.nlm.nih.gov/pubmed/?term="functional+somatic+syndromes"

going back to 1999.


See also

August 2008 Special Report co-authored by Javier Escobar, MD, and Humberto Marin, MD, for Psychiatric Times: Unexplained Physical Symptoms What’s a Psychiatrist to Do?

Dr Escobar was a member of the DSM-5 Task Force and served as Task Force liaison to the Somatic Symptom Disorders Work Group:

“…Perhaps as a corollary of turf issues, general medicine and medical specialties started carving these syndromes with their own tools. The resulting list of ‘medicalized’, specialty-driven labels that continues to expand includes fibromyalgia, chronic fatigue syndome, multiple chemical sensitivity, and many others.

“…These labels fall under the general category of functional somatic syndromes and seem more acceptable to patients because they may be perceived as less stigmatizing than psychiatric ones. However, using DSM criteria, virtually all these functional syndromes would fall into the somatoform disorders category given their phenomenology, unknown physical causes, absence of reliable markers, and the frequent coexistence of somatic and psychiatric symptoms.”

In Table 1, under the heading “Functional Somatic Syndromes (FSS)” Escobar and Marin list:

Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection, Total allergy syndrome.

 

[Molly98]

Is the Countess of Mar aware of this epidemic of nonsense spreading around the country?

I think of the splendid letter she wrote to the BBC. I wonder whether she could write a letter to the chief medical officer, the head of mental health in the NHS, the head of the NHS, NICE, all the clinical commissioning groups in the country etc. Any letter could be signed by as many medical people and ME charities as can be gathered to add clout.

Much as I appreciate David Tuller's skills, I think any letter or other approach needs to come from someone with a senior position within the UK, otherwise the powers that be will simply ignore it.

Once such a letter is in circulation, we can then do our best to raise awareness of it, and use it as ammunition in our own individual situations, for example contacting our local clinical commissioning groups and gp practices to alert them to the fact that this junk they are having foisted on them is not evidence based or effective for ME.

That is a great idea Trish I agree, I think in this country and the way that things operate here, the Countess of Mar may be more effective with the powers that be than David Tuller.

 

[CFS_for_19_years]

The term "functional somatic syndromes" has been in use as an umbrella term for a collection of conditions and illnesses since before 1999, in the US, UK and in other countries.

Ah well then, it shouldn't be.

 

[Molly98]

rritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection, Total allergy syndrome.

So that's just about got everyone on the entire planet covered to justify their interfering psych experiments,( clever marketing ) except them of course, they would never come under the category of Functional disorders or syndromes, any physical symptoms would of course be real
in their case.

What is even more infuriating is that it is all done under the guise of being caring do-gooders, wanting to help us out of our misery. It is like colonialism reinvented for the modern age for those who sadly still have the colonial urge deeply embedded in their psyche.

What elitist, pretentious, condescending ........ trying so hard not to swear today but sooo difficult

 

[Dx Revision Watch]

@charles shepherd

Dr Shepherd, could the issue of the rolling out of IAPT services for MUS and CFS be taken up by Forward-ME?

Could the Countess of Mar consider tabling a Written Question that prompts a Written statement that patients with ME/CFS will not be pressured into accepting CBT via IAPT funded MUS or CFS services or via integrated IAPT within GP practices if this is not their choice of management approach?

That where dedicated CFS services already exist, that patients will not be diverted into integrated IAPT run MUS or CFS services if this is not the their choice of management approach in those areas of the country where early implementation of IAPT has already been rolled out.

Could Forward-ME set up meetings with NHS representatives to discuss considerable concerns over "early implementers" of IAPT MUS and CFS services and the anticipated rolling out of further IAPT services for LTCs, MUS and CFS to successful bidders during 2017/18/19?

Key sources:

(Prof Rona Moss-Morris is National Clinical Advisor to IAPT NHS England on MUS.)


https://www.england.nhs.uk/mentalhealth/adults/iapt/mus/sites/

NHS England >
Mental health > Adults >
IAPT (Improving Access to Psychological Therapies) programme >

Long Term Conditions and Medically unexplained symptoms >

Integrated IAPT early implementers for MUS and CFS services

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

Call to bid for funding for next roll out of IAPT MUS and CFS services:

https://www.england.nhs.uk/stps/tf-call-to-bid/
https://www.england.nhs.uk/wp-content/uploads/2016/12/mental-health-call-to-bid.pdf

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

NHS IAPT
Medically Unexplained Symptoms/Functional Symptoms

Positive Practice Guide

July 2014

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

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

Flyer: SSD/MUS Symposium

http://primary-mentalhealth-care.elft.nhs.uk/uploads/files/8/Resource/Preliminary%20programme%20for%20International%20symposium%20on%20SSDMUS%20(2).pdf

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

http://www.nsun.org.uk/news/national-summit-medically-unexplained-symptoms/

Medically Unexplained Symptoms National Summit –

October 2016

Professor Rona Moss-Morris presentation
Dr Abrar Hussain presentation
Professor Carolyn Chew-Graham and Dr Simon Heyland presentation



Edited to add: I have PMd Dr Shepherd, who may not have had the time to follow this thread.

Further edited to add: I have also emailed Dr Shepherd and Neil Riley with the above.

 

[trishrhymes]

Maybe we could write a letter to the Countess and to the Forward ME group to ask them whether they are prepared to act on this.

 

[Dx Revision Watch]

Maybe we could write a letter to the Countess and to the Forward ME group to ask them whether they are prepared to act on this.

I've just asked Dr Shepherd, via PM, if this issue can be put on the Forward-ME Agenda by the Countess of Mar.

 

[Dx Revision Watch]

OK. I think I've now posted pretty much all the material I have on this issue. I'll be flagging this thread up on Twitter over the coming week.

I closed my Dx Revision Watch Facebook page several years ago - so I don't have a presence on FB. But it would be useful if those who are on FB could give this thread some exposure. Also, the call for input from anyone who has already been offered referrals for CBT via IAPT services in their area, or for IAPT CBT via their GP (see Post #1).

Suzy

 

[slysaint]

We are not the only ones; there is a petition here
http://forums.phoenixrising.me/index.php?threads/me-is-not-mups-take-a-minute-to-sign-please.44475/

there are several other threads on MUPs too.

Maybe an email to our friend Kelvin Hopkins in the H of C.?
And/Or a petition of our own?

All ME charities/groups appear not to be doing anything (?); which given the whole PACE thing is confusing as this is confirming the very things all have supposedly been campaigning against ie no more CBT/GET for ME/CFS patients, and ME is a biological disease.

so fed up/tired of fighting for everything

 

[NelliePledge]

We are not the only ones; there is a petition here
http://forums.phoenixrising.me/index.php?threads/me-is-not-mups-take-a-minute-to-sign-please.44475/

there are several other threads on MUPs too.

Maybe an email to our friend Kelvin Hopkins in the H of C.?
And/Or a petition of our own?

All ME charities/groups appear not to be doing anything (?); which given the whole PACE thing is confusing as this is confirming the very things all have supposedly been campaigning against ie no more CBT/GET for ME/CFS patients, and ME is a biological disease.

so fed up/tired of fighting for everything

Now Im beggining to understand the enormity of this. No wonder the BPS crowd arent accepting the pushback on PACE there is a massive house of cards built on top of it.

 

[Dx Revision Watch]

Now Im beggining to understand the enormity of this. No wonder the BPS crowd arent accepting the pushback on PACE there is a massive house of cards built on top of it.

Yes, and the next tranche of government investment in integrated IAPT delivered CBT for MUS and CFS is a gift which Prof Rona Moss-Morris (National Clinical Advisor to IAPT NHS England on MUS) and her colleagues will cherish and exploit.

Perhaps MEA might consider printing some nice purple Tee shirts with

"JUST SAY NO"

or

"NOT for ME
thank you."

on them to wear when visiting GPs in those areas where services have already been rolled out and for when the next batch of areas have secured successful bids for funding to commission services.

 

[Countrygirl]

Yes, and the next tranche of government investment in integrated IAPT delivered CBT for MUS and CFS is a gift which Prof Rona Moss-Morris (National Clinical Advisor to IAPT NHS England on MUS) and her colleagues will cherish and exploit.

Perhaps MEA might consider printing some nice purple Tee shirts with

"JUST SAY NO"

on them to wear when visiting GPs in those areas where services have already been rolled out and for when the next batch of areas have secured successful bids for funding to commission services.

@charles shepherd can I place my order for one now please? Size 16 top now I am afraid. Age and the effects of gravity are getting to me.

PS. I need it urgently.

Thanks.

 

[medfeb]

This publication might provide useful comments on the issues with the MUS concept.

Jutel A. “Medically unexplained symptoms and the disease label.” Social Theory & Health Vol. 8, 3, 229–245 http://dx.doi.org/10.1057/sth.2009.21​

 

[MEMum]

OK. I think I've now posted pretty much all the material I have on this issue. I'll be flagging this thread up on Twitter over the coming week.

I closed my Dx Revision Watch Facebook page several years ago - so I don't have a presence on FB. But it would be useful if those who are on FB could give this thread some exposure. Also, the call for input from anyone who has already been offered referrals for CBT via IAPT services in their area, or for IAPT CBT via their GP (see Post #1).

Suzy

Thanks again for highlighting all this Suzy.

There is some good news, in N Ireland.
See @Keela Too post on I HAVE A HOPE FOR 2017 post re this

Thanks for the MUS link @medfeb . Once I've translated some of the 'social jargon' it could be v useful.

 

[Dx Revision Watch]

I have received a response from Dr Shepherd regarding this issue.

Tomorrow's APPG on ME meeting has been cancelled and Dr Shepherd thinks it may be several weeks before the next meeting is held.

He says at the moment the focus of the APPG on ME is the Social Care Inquiry and there may not be the capacity for the APPG on ME to look at this issue in detail.

He will be meeting with the Countess of Mar on 7th February and he will discuss with her whether this is something that Forward-ME Group could look at.


I will offer to provide Dr Shepherd with any background briefing materials that might be helpful to the Countess of Mar and Forward-ME Group.

 

[Dx Revision Watch]

Thanks again for highlighting all this Suzy.

There is some good news, in N Ireland.
See @Keela Too post on I HAVE A HOPE FOR 2017 post re this

Thanks for the MUS link @medfeb . Once I've translated some of the 'social jargon' it could be v useful.

News from N. Ireland:

https://www.facebook.com/Hope4MEFibro/posts/1266200643438753

 

[Dx Revision Watch]

Via Dr Marc-Alexander Fluks:

Source: Journal of Psychosomatic Research
Preprint
Date: January 10, 2017
URL: http://www.sciencedirect.com/science/article/pii/S0022399917300181


Long-term economic evaluation of cognitive-behavioural group treatment
versus enhanced usual care for functional somatic syndromes
----------------------------------------------------------------------
Andreas Schroder(a,*), Eva Ornbol(a), Jens S. Jensen(a), Michael
Sharpe (b), Per Fink(a)
a Research Clinic for Functional Disorders and Psychosomatics, Aarhus
University Hospital, Aarhus, Denmark
b Psychological Medicine Research, Department of Psychiatry,
University of Oxford, UK
* Corresponding aithor. The Research Clinic for Functional Disorders
and Psychosomatics, Aarhus University Hospital, Noerrebrogade 44,
8000 Aarhus C, Denmark.

Received 23 June 2016
Revised 5 January 2017
Accepted 7 January 2017
Available online 10 January


Abstract

Objective
Patients with functional somatic syndromes (FSS) such as fibromyalgia
and chronic fatigue syndrome have a poor outcome and can incur high
healthcare and societal costs. We aimed to compare the medium-term (16
months) cost-effectiveness and the long-term (40 months) economic
outcomes of a bespoke cognitive-behavioural group treatment (STreSS)
with that of enhanced usual care (EUC).

Methods
We obtained complete data on healthcare and indirect costs (i.e.
labour-marked-related and health-related benefits) from public
registries for 120 participants from a randomised controlled trial.
Costs were calculated as per capita public expenses in 2010 EU. QALYs
gained were estimated from the SF-6D. We conducted a medium-term
cost-effectiveness analysis and a long-term cost-minimization analysis
from both a healthcare (i.e. direct cost) and a societal (i.e. total
cost) perspective.

Results
In the medium term, the probability that STreSS was cost-effective at
thresholds of 25,000 to 35,000 EU per QALY was 93-95% from a healthcare
perspective, but only 50-55% from a societal perspective. In the long
term, however, STreSS was associated with increasing savings in indirect
costs, mainly due to a greater number of patients self-supporting. When
combined with stable long-term reductions in healthcare expenditures,
there were total cost savings of 7184 EU (95% CI 2271 to 12,096,
p=0.004) during the third year after treatment.

Conclusion
STreSS treatment costs an average of 1545 EU. This cost was more than
offset by subsequent savings in direct and indirect costs.
Implementation could both improve patient outcomes and reduce costs.

Keywords: Economic evaluation; Cost-effectiveness; Cognitive-behavioural
therapy; Functional somatic syndromes; Bodily distress syndrome;
Fibromyalgia; Chronic fatigue syndrome

--------
(c) 2017 Elsevier Inc.

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

Note: Berkshire MUS services report have involved Per Fink in training staff in the TERM Model.

 

[Molly98]

Via Dr Marc-Alexander Fluks:

Source: Journal of Psychosomatic Research
Preprint
Date: January 10, 2017
URL: http://www.sciencedirect.com/science/article/pii/S0022399917300181


Long-term economic evaluation of cognitive-behavioural group treatment
versus enhanced usual care for functional somatic syndromes
----------------------------------------------------------------------
Andreas Schroder(a,*), Eva Ornbol(a), Jens S. Jensen(a), Michael
Sharpe (b), Per Fink(a)
a Research Clinic for Functional Disorders and Psychosomatics, Aarhus
University Hospital, Aarhus, Denmark
b Psychological Medicine Research, Department of Psychiatry,
University of Oxford, UK
* Corresponding aithor. The Research Clinic for Functional Disorders
and Psychosomatics, Aarhus University Hospital, Noerrebrogade 44,
8000 Aarhus C, Denmark.

Received 23 June 2016
Revised 5 January 2017
Accepted 7 January 2017
Available online 10 January


Abstract

Objective
Patients with functional somatic syndromes (FSS) such as fibromyalgia
and chronic fatigue syndrome have a poor outcome and can incur high
healthcare and societal costs. We aimed to compare the medium-term (16
months) cost-effectiveness and the long-term (40 months) economic
outcomes of a bespoke cognitive-behavioural group treatment (STreSS)
with that of enhanced usual care (EUC).

Methods
We obtained complete data on healthcare and indirect costs (i.e.
labour-marked-related and health-related benefits) from public
registries for 120 participants from a randomised controlled trial.
Costs were calculated as per capita public expenses in 2010 EU. QALYs
gained were estimated from the SF-6D. We conducted a medium-term
cost-effectiveness analysis and a long-term cost-minimization analysis
from both a healthcare (i.e. direct cost) and a societal (i.e. total
cost) perspective.

Results
In the medium term, the probability that STreSS was cost-effective at
thresholds of 25,000 to 35,000 EU per QALY was 93-95% from a healthcare
perspective, but only 50-55% from a societal perspective. In the long
term, however, STreSS was associated with increasing savings in indirect
costs, mainly due to a greater number of patients self-supporting. When
combined with stable long-term reductions in healthcare expenditures,
there were total cost savings of 7184 EU (95% CI 2271 to 12,096,
p=0.004) during the third year after treatment.

Conclusion
STreSS treatment costs an average of 1545 EU. This cost was more than
offset by subsequent savings in direct and indirect costs.
Implementation could both improve patient outcomes and reduce costs.

Keywords: Economic evaluation; Cost-effectiveness; Cognitive-behavioural
therapy; Functional somatic syndromes; Bodily distress syndrome;
Fibromyalgia; Chronic fatigue syndrome

--------
(c) 2017 Elsevier Inc.

So it is not about if these treatments help or are effective in any way but purely about costs and trying to stop people with these illnesses going to the doctors or being referred to hospital specialists, because we are all undeserving and we waste the resources of the health service and are such a burdon.

I don't really understand. It seems that most ME sufferers do not visit Doctors unless desperate, I know I certainly don't, and I have also never received any help or support or treatment for my ME. Perhaps this is different in the initial stages when you don't know what's wrong with you and want to know but I think most of us soon give up when we find we are banging our heads against a brick wall.