Fibromyalgia - Guidelines for the Disability Analyst

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Dear Department for Work and Pensions,

DWP Document:
Training and Development
Continuing Medical Education Programme
Fibromyalgia - Guidelines for the Disability Analyst
MED/S2/CMEP~0035
Version 5 Final
Module: 14

I took the above Condition Guides at random and I read it to compare it to published research and statements made by the DWP regarding the role of HCP.

Question 1 – Given that the DWP claim that evidence based medicine is key to WCA why was the last medical update for the “Fibromyalgia - Guidelines for the Disability Analyst (v5)” completed in July 2009, over 3 years ago?

Question 2 – When is the next medical update scheduled for this guide?

Question 3 – As the last update was completed by Dr Peter Ellis’ what is his medical specialism (e.g. rheumatology)? This is not counted as personal data under the DPA as Doctors are required to provide their qualifications and GMC registration details upon request.

The DWP has stated numerous times that the role of the HCP is not diagnostic in nature and as such (along with the help of LiMA) nurses can carry out the role of disability analyst. However, this guideline states:

“What is the differential diagnosis in this case? Give the likely diagnosis/diagnoses.”

Differential diagnosis in relational to diseases and their treatment falls within the role of a Doctor and the DWP states that diagnosis skills are not required for an HCP which is why Nurses can carry out the role.

Question 4 – Why are HCP being asked to undertake differential diagnosis in this guide if that is not required for their role?

The guide includes the following two statements:

“In 1995 the “Copenhagen Declaration” recognised the existence of the syndrome and so ensured that the condition is now established as a distinct clinical entity.”

“It is widely felt that this classification, although initially useful, is an over-simplification of a condition which is complex, multifactorial and not in the strict sense a discrete entity.”

Clearly the two statements are mutually exclusive and suggest that the author is biased against the agreed consensus, which contradicts the stated objective of the guide.

Question 5 – How can a document that has supposedly undergone a QA assessment contain such contradictory statements?

Text From Guide
“Medically unexplained physical symptoms represent by far the most frequent cause of referral to specialist outpatient clinics, and it is not surprising that each specialty has its own compartment in which such patients can comfortably be accommodated. Rheumatologists have their fibromyalgia, cardiologists their non-cardiac chest pain and gastroenterologists, irritable bowel syndrome.
It is not surprising therefore that FMS shares common features with a number of other conditions.

Chronic fatigue syndrome
The clearest overlap is with chronic fatigue syndrome (CFS). Some of the shared characteristics are illustrated below.”

The following characteristics are then listed:
• Pain
• Fatigue
• Myalgia
• Tender points
• Sleep disorder
• Infectious links
• Prevalence

These characteristics also overlap with the following:
• Influenza (and other serious viral infections)
• Serious Bacterial Infections
• HIV
• Dengue Fever
• Epstein-Barr Virus Infectious Mononucleosis

Question 6 – What clinical evidence does the DWP have that CFS and fibromyalgia are the ‘clearest overlap’ using the listed characteristics, as this statement clearly implies, as opposed to the others listed above?

Question 7: If the DWP has no evidence supporting the statement then why is it included in the guide?

The following published research suggest a totally different view which is supported by tangible evidence (unlike the guidance document)

August 2012 - Is chronic fatigue syndrome the same illness as fibromyalgia: evaluating the 'single syndrome' hypothesis. Abbi B, Natelson BH. Source From the War Related Illness and Injury Study Center, DVA Medical Center, East Orange, NJ and Pain and Fatigue Study Center, Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, New York, USA.

Abstract
Chronic fatigue syndrome (CFS) and fibromyalgia (FM) are medically unexplained syndromes that can and often do co-occur. For this reason, some have posited that the two are part of the same somatic syndrome-examples of symptom amplification. This hypothesis would suggest that few differences exist between the two syndromes. To evaluate this interpretation, we have searched the literature for articles comparing CFS to FM, reviewing only those articles which report differences between the two. This review presents data showing differences across a number of parameters-implying that the underlying pathophysiology in CFS may differ from that of FM. We hope that our review encourages other groups to look for additional differences between CFS and FM. By continuing to preserve the unique illness definitions of the two syndromes, clinicians will be able to better identify, understand and provide treatment for these individuals.
PMID: 22927538 [PubMed - as supplied by publisher]

September 2011 - The Science of Fibromyalgia. CONCISE REVIEW FOR CLINICIANS Daniel J. Clauw, MD; Lesley M. Arnold, MD; and Bill H. McCarberg, MD; for the FibroCollaborative. Mayo Clin Proc. 2011;86(9):907-911.

Abstract
Fibromyalgia (FM) is a common chronic widespread pain disorder. Our understanding of FM has increased substantially in recent years with extensive research suggesting a neurogenic origin
for the most prominent symptom of FM, chronic widespread pain. Neurochemical imbalances in the central nervous system are associated with central amplification of pain perception characterized by allodynia (a heightened sensitivity to stimuli that are not normally painful) and hyperalgesia (an increased response to painful stimuli). Despite this increased awareness and understanding, FM remains undiagnosed in an estimated 75% of people with the disorder. Clinicians could more effectively diagnose and manage FM if they better understood its underlying mechanisms. Fibromyalgia is a disorder of pain processing. Evidence suggests that both the ascending and descending pain pathways operate abnormally, resulting in central amplification of pain signals, analogous to the “volume control setting” being turned up too high. Patients with FM also exhibit changes in the levels of neurotransmitters that cause augmented central nervous system pain processing; levels of several neurotransmitters that facilitate pain transmission are elevated in the cerebrospinal fluid and brain, and levels of several neurotransmitters known to inhibit pain transmission are decreased. Pharmacological agents that act centrally in ascending and/or descending pain processing pathways, such as medications with approved indications for FM, are effective in many patients with FM as well as other conditions involving central pain amplification. Research is ongoing to determine the role of analogous central nervous system factors in the other cardinal symptoms of FM, such as fatigue, nonrestorative sleep, and cognitive dysfunction

Text From Guide
“Some may take the view that by giving the resulting disorder a medically respectable title it will contribute to illness behaviour and learned helplessness. It must be recognised that unless a condition is labelled there will be difficulties for physicians, the legal profession, insurers and benefits decision makers in dealing with these patients.

Few if any insurance or social security systems will permit compensation for general aches, pain and misery. However, when we as a Health Care Professional encounter an individual who is clearly distressed and debilitated most of us will be content to apply a label like fibromyalgia, if the clinical evidence generally supports it, so ensuring that the person can be classified and handled within the system. The term fibromyalgia syndrome is a clinical construct that allows physicians and others to describe and communicate to themselves a definition of one expression of chronic distress.”

Question 8 – Given that fibromyalgia is a distinct condition (included in ICD10) why does the above text refer to it as no more than a label? The only possible reason for using this tone is to diminish it in the eyes of the HCP.

Recent research suggests that fibromyalgia may actually be associated with central nervous system dysfunction and anatomical changes in the brain. It is strange that a so-called evidence based guide contains no mention of probably physical cause/manifestation. The tone of the guide is clearly intended to leave the reader with the impression that fibromyalgia is not a real condition and is ‘all in the mind’ (a common medical claim throughout the ages when a condition is not yet fully understood and especially when the majority of people who have it are women!). This is supported by the inclusion of section 8.2 which clearly attempts to present fibromyalgia as a major depressive disorder without mentioning other studies that do not support this approach.

Question 9 – Please provide me with the large number of studies that have assessed the possible association between FMS and major depressive as stated in section 8.2?

The guide states as one of its objectives:
“Describe an approach to the provision of medical advice which is pragmatic, medically logical and in keeping with the current consensus of medical opinion.”

The published guide is biased towards presenting fibromyalgia as a psychological illness and attempting to link it with Chronic Fatigue Syndrome (CFS). Given that this is clearly not representative of current medical opinion the document is not meeting a key objective.

Question 10: The guide is obviously biased and does not reflect current medical consensus. If WCA for people diagnosed with Fibromyalgia are assessed using this guide and refused benefits, are the DWP aware that it can be used as evidence at appeal that the assessment was fatally flawed?

Yours faithfully,

John Slater

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Dear Department for Work and Pensions,

Please pass this on to the person who conducts Freedom of Information reviews.

I am writing to request an internal review of Department for Work and Pensions's handling of my FOI request 'Fibromyalgia - Guidelines for the Disability Analyst'.

Yet another FOIA request that hasn't been answered within the 20 day seadline. Please provide the data requested along with an explanation as to why the deadline was missed.

A full history of my FOI request and all correspondence is available on the Internet at this address:
http://www.whatdotheyknow.com/request/fi...

Yours faithfully,

John Slater

DWP freedom-of-information-requests, Department for Work and Pensions

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DWP DWP Medical Services Correspondence, Department for Work and Pensions

2 Attachments

Dear Mr Slater 

Please find enclosed a response to your request for information
under the Freedom of Information Act by the Medical Services
Contract Correspondence Team Freedom of Information Officer,
who apologises for the delay in providing you with a response.

<<FOI Response 3886-3684 Mr Slater.pdf>> <<MED S2 CMEP~0035 -
Module 14 - Fibromyalgia v 6 Final.pdf>>
Kind regards

Health & Disability Assessment (Operations) Team, Department
for Work and Pensions, Room 306, Block 3, Norcross, Norcross
Lane, Blackpool, FY5 3TA

Please consider the environment before printing

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Dear Department for Work and Pensions,

Please pass this on to the person who conducts Freedom of Information reviews.

I am writing to request an internal review of Department for Work and Pensions's handling of my FOI request 'Fibromyalgia - Guidelines for the Disability Analyst'.

“1. Given that the DWP claim that evidence based medicine is key to WCA why was the last medical update for the “Fibromyalgia - Guidelines for the Disability Analyst (v5)” completed in July 2009, over 3 years ago?”

The revised document guide is nothing more than the original version 5 document having undergone minor cosmetic changes and therefore cannot be regarded as a medical update. Therefore, please provide the data originally requested:

Question 1 – Given that the DWP claim that evidence based medicine is key to WCA why was the last medical update for the “Fibromyalgia - Guidelines for the Disability Analyst (v5)” completed in July 2009, over 3 years ago?

Question 2 – The requested data hasn’t been supplied. Please tell me when the next medical update is scheduled for this guide?

“3. As the last update was completed by Dr Peter Ellis’ what is his medical specialism (e.g. rheumatology)? This is not counted as personal data under the DPA as Doctors are required to provide their qualifications and GMC registration details upon request.”

Question 3 - In order to be sure that the appropriate data is obtained from the GMC website I need the unique GMC registration number for the Dr Peter Ellis referred to. As Doctors are required to provide this data upon request please provide me with Dr Peter Ellis’ GMC registration number.

DWP Answer to Q 4 “differential diagnosis is provided to enhance the HCPs understanding of the medical condition.”

Question 4 - Given that the DWP has claimed on numerous occasions in response to FOIA requests that HCP are not required to understand medical conditions or question their diagnosis why is the department making such a contradictory statement? The DWP is required to act truthfully in response to FOIA requests therefore it is appropriate to answer this question.

“8. Given that fibromyalgia is a distinct condition (included in ICD10) why does the above text refer to it as no more than a label? The only possible reason for using this tone is to diminish it in the eyes of the HCP.”

Question 8 - Please provide the data requested. The revised guide still refers to fibromyalgia as a label as previously described.

“9. Please provide me with the large number of studies that have assessed the possible association between FMS and major depressive disorder as stated in section 8.”

Question 9 – The response did not address this. Please provide me with the requested data.

In relation to questions 5,6,7 and 10, I note that the DWP has employed its usual ploy of FOIA responses not being for the purpose of explaining things or confirming whether assumptions are correct or not.

Question 5 – This is a reasonable question. However I accept that it does not fit with FOIA requests. I have reworded it below:

Please provide me with the documented QA assessment process employed by the DWP/Atos when producing documents such as the one subject to this FOIA request.

Questions 6 & 7 are linked.
Question 6 - This is a clear request for data please provide it. To avoid any misunderstanding I want the clinical evidence (this is usually published in peer reviewed journals) that proves CFS and fibromyalgia are the ‘clearest overlap’ using the listed characteristics.

Question 7 – This is reasonable question given the nature of the document. Perhaps I should reword the request:

Please provide me with any data held by the DWP that “CFS and fibromyalgia are the ‘clearest overlap’ using the listed characteristics” if it is unable to provide the data requested in question 6.

Question 10 – This is also a reasonable request, however I will re-word it for ease of understanding:
Please provide me with the data held by the DWP that suggests that published guide could be used as evidence at a tribunal to demonstrate that the WCA was flawed.

A full history of my FOI request and all correspondence is available on the Internet at this address:
http://www.whatdotheyknow.com/request/fi...

Yours faithfully,

John Slater

DWP freedom-of-information-requests, Department for Work and Pensions

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DWP DWP Medical Services Correspondence, Department for Work and Pensions

1 Attachment

Dear Mr Slater

Please find enclosed a response to your request for a review of
the information previously supplied   under the Freedom of
Information Act by the Health and Disability Assessments
(Operations) Correspondence Team Freedom of Information
Internal Review Officer <<3953-IR705 Response.pdf>> .

Kind regards

Health & Disability Assessment (Operations) Team, Department
for Work and Pensions, Room 306, Block 3, Norcross, Norcross
Lane, Blackpool, FY5 3TA

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DWP DWP Medical Services Correspondence, Department for Work and Pensions

2 Attachments

Dear Mr Slater

Please see your FOI response attached

Kind regards

Health & Disability Assessments (Operations)/Department for Work and Pensions/Room 306/Block 31/Norcross/Norcross Lane/Blackpool/FY5 3TA

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Dear Department for Work and Pensions,

Please pass this on to the person who conducts Freedom of Information reviews.

I am writing to request an internal review of Department for Work and Pensions's handling of my FOI request 'Fibromyalgia - Guidelines for the Disability Analyst'.

DWP Response to Q9
I do wish that the DWP would employ people that understand the FOI Act and don’t think it is clever to play silly games.

I’m not going to waste my time explaining why the answer provided to Q9 does not comply with the FOI Act as the people dealing with these requests should know.

The situation is very simply. The department has claimed that “a large number of studies that have assessed the possible association between FMS and major depressive disorder.” It is required to either provide me with copies or direct me to them.

Directing me to them means providing the appropriate citation for each of the papers so that I can find them myself or providing the relevant internet links. Simply saying that they are readily available is not complying with the Department’s statutory obligations and the good practise guidance issued by the ICO and the MoJ.

This is the Department’s last chance to comply with its statutory duty before I send a complaint to the ICO.

What makes the Department’s behaviour so pathetic is that it knows that the ICO will find against it but clearly it believes being obstructive is more important. If the DWP stopped playing silly games and actually complied with the FOI Act imagine all the public money that could be saved!

A full history of my FOI request and all correspondence is available on the Internet at this address:
http://www.whatdotheyknow.com/request/fi...

Yours faithfully,

John Slater

DWP freedom-of-information-requests, Department for Work and Pensions

This is an automated confirmation that your request for information has
been accepted by the DWP FoI mailbox.

By the next working day your request will be forwarded to the relevant
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expect a response within 20 working days.

Should you have any further queries in connection with this request do
please contact us.

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please click on the link below.

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DWP DWP Medical Services Correspondence, Department for Work and Pensions

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Mr Slater

Please see attached reply to your Freedom of Information request

Many Thanks

Business Management Team | Department for Work and Pensions | Contracted Customer Services Directorate | DWP Operations | Room 306, Block 3, Norcross, Norcross Lane, Blackpool FY5 3TA | www.dwp.gov.uk | Please consider the environment before printing

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Dear Department for Work and Pensions,

Please pass this on to the person who conducts Freedom of Information reviews.

I am writing to request an internal review of Department for Work and Pensions's handling of my FOI request 'Fibromyalgia - Guidelines for the Disability Analyst'.

I’m glad that the DWP is fully aware of the guidance issued by the ICO. Sadly the same cannot be said about the previous reviewer’s knowledge of the Diagnostic and Statistical Manual of Mental Disorders 4 ed (DSM IV) and basic English comprehension.

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is published by the American Psychiatric Association and provides a common language and standard criteria for the classification of mental disorders. It also lists known causes of these disorders, statistics in terms of gender, age at onset, and prognosis as well as some research concerning the optimal treatment approaches. It is interesting that in the UK NICE guidance and the International Classification of Diseases (ICD-10) are also used but are not mentioned in the published DWP guidance.

The DSM IV provides the following etiology for Major Depressive Disorders:
“Research has shown that depression is influenced by both biological and environmental factors. Studies show that first degree relatives of people with depression have a higher incidence of the illness, whether they are raised with this relative or not, supporting the influence of biological factors. Situational factors, if nothing else, can exacerbate a depressive disorder in significant ways. Examples of these factors would include lack of a support system, stress, illness in self or loved one, legal difficulties, financial struggles, and job problems. These factors can be cyclical in that they can worsen the symptoms and act as symptoms themselves.”

It is interesting to note the nonappearance of fibromyalgia in the etiology above and its total absence from the DSM IV itself.

The statement referred to by the previous reviewer is shown below:
“A large number of studies have assessed the possible association between FMS and major depressive disorder [as defined in the Diagnostic and Statistical manual of Mental Disorders 4th ed. (DSM IV)]”

It is clear to anyone with a basic understanding of the English language that the use of the reference to DSM IV is solely to provide a recognised definition for “major depressive disorder”.

The previous reviewer’s statement that “This contains research and studies relating to different
approaches ...” is incorrect as the DSM IV does not contain research and studies relating to different approaches. In fact, as stated above, fibromyalgia is totally absent from the DSM IV. One can only hope that the statement was born out of ignorance rather than an intent to deceive.

However, the DWP still has not provided me with or directed me to the “large number of studies (that) have assessed the possible association between FMS and major depressive disorder”. The DWP must either provide the requested data or admit that it doesn’t have the data.

If it does not have the requested data then it is clearly unable to substantiate the claims made in the document “fibromyalgia guidelines for the disability analyst” and people will be able to draw the only logical conclusion that the guidance is not based upon the latest research and reflects the personal bias of the author.

A full history of my FOI request and all correspondence is available on the Internet at this address:
http://www.whatdotheyknow.com/request/fi...

Yours faithfully,

John Slater

DWP freedom-of-information-requests, Department for Work and Pensions

This is an automated confirmation that your request for information has
been accepted by the DWP FoI mailbox.

By the next working day your request will be forwarded to the relevant
information owner within the Department who will respond to you direct. 

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expect a response within 20 working days.

Should you have any further queries in connection with this request do
please contact us.

For further information on the Freedom of Information Act within DWP
please click on the link below.

[1]http://www.dwp.gov.uk/freedom-of-informa...

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L. De Jesus left an annotation ()

As someone who has been 'diagnosed' with Fibromyalgia in 2008 and continued to worsen in condition, and, unknowingly due to lack of adequate medical advice, remained exposed to the same afflicting conditions and environment. I would like to express my sincere thanks, to you John, for asking and exposing the subject in the way I and many haven't been able to.

Thank you.

DWP DWP Medical Services Correspondence, Department for Work and Pensions

1 Attachment

Dear Mr Slater

Please see your FOI response attached

Kind regards

Health & Disability Assessments (Operations)/Department for Work and Pensions/Room 306/Block 31/Norcross/Norcross Lane/Blackpool/FY5 3TA

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Margaret Hughes left an annotation ()

I would just like to say a big thank you to John Slater. I am currently waiting for my DLA appeal after the ATOS Dr dismissed my Fibromyalgia symptoms - I was diagnosed in 1996 - and suggested that my current medication is appropriate! He could not find evidence of 'muscle wasting or joint deformity' (I wear comfortable pull on trousers so I don't have to struggle with buttons or zips) and that I was 'observed to rise from sitting, manage stairs and walk about'! He came to see me in the morning and all I did was sit on the sofa until he arrived. I did rise from sitting when he asked to be shown where I sleep and asked me to lay on the bed then get up from the bed then back downstairs. No comment of the double bannister I need to get up and downstairs. Later in the 1.5 hour visit he asked me to show him my kitchen - 10 steps for him 17 steps for me, and to open a wall cupboard door. Then back to the lounge. On this evidence the Decision Maker wrote. 'It has been decided that Mrs Hughes can manage her own personal care slowly without any help.' I am at my witts end and so grateful for your efforts. Again, thank you - you have given me hope.