Category: A4e

Benefits and Work: Hundreds of claimants unjustly imprisoned

Benefits and Work: Hundreds of claimants unjustly imprisoned

And update from Benefits and Work’s Steve Donnison | 12 November 2009

In this newsletter we look at the shocking evidence provided by a welfare benefits expert that every year hundreds of claimants are being unjustly imprisoned because of misleading evidence provided to criminal courts by the DWP.

It’s not possible to prove whether the DWP is providing inaccurate evidence deliberately or whether it is solely through negligence. But, given the department’s desire to get as many tabloid headlines as possible about claimant fraud, many people will reach their own conclusions.

And still on the subject of potentially misleading evidence, we revisit the issue of taping your Atos benefits medical. Regular readers will know that Atos insist that if claimants want to record their examination they must agree to provide, at their own huge expense, a sound engineer and a tape machine capable of making two tapes at the same time.

We discover what happened when one of our members did exactly that.

We couldn’t leave the topic of misleading statements without revisiting the issue of DLA and the proposed National Care Service. Our suspicion that health secretary Andy Burnham’s apparent reassurance about DLA last month left claimants aged 65 and over still under threat is looking increasingly accurate. Burnham failed to answer repeated questions on the subject fired at him by MPs during a debate on the National Care Service.

What’s more, an undertaking to reveal full costings of the new service before the end of the consultation period has now been broken, leaving charities threatening to use the Freedom of Information Act.

That same consultation ends tomorrow. If you haven’t already contributed to the mauling the government’s proposals are receiving on the Big Care debate website, this is your final chance to do so.

Good luck,

Steve Donnison

More secrecy around National Care Service
http://www.benefitsandwork.co.uk/news/latest-news/1123-more-secrecy-around-national-care-service
The government has gone back on a pledge to reveal the true cost of its proposed National Care Service before the green paper consultation period ends on November 13th, prompting further suspicions about the honesty of the whole consultation process.

Burnham refuses to answer DLA questions
http://www.benefitsandwork.co.uk/news/latest-news/1122-burnham-refuses-to-answer-dla-questions
Health secretary Andy Burnham repeatedly failed to answer questions about disability living allowance for people aged 65 and over during a commons debate on the care green paper last week.

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Hundreds of claimants unjustly imprisoned
http://www.benefitsandwork.co.uk/news/members-only-news/1134-hundreds-of-claimants-unjustly-imprisoned
Many hundreds of claimants are unjustly imprisoned every year a welfare benefits expert has told MPs . In one case he assisted with, a woman prosecuted for a £47,000 overpayment had in reality under-claimed benefits.

Getting permission to record your medical
http://www.benefitsandwork.co.uk/news/members-only-news/1133-getting-permission-to-record-your-medical
The issue of tape recording benefits medicals is one that frequently comes up in our discussion forums. Atos, the company that caries them out, insists that if you wish to do so you must provide a professional operator and a properly calibrated tape machine that records two copies of the examination at the same time. Deeply unreasonable and unaffordable as these conditions are, what happens when a claimant actually meets them?

Guardian: Bending the rules

From the Guardian’s Melissa Viney, Wednesday 28 October 2009:

WordPress Shortlink: http://wp.me/p5foE-2iI

http://www.guardian.co.uk/society/2009/oct/28/work-capability-assessment-incapacity-benefits

Bending the rules

Critics of new medical tests aimed at getting claimants off benefits and into work say they are target-driven measures that penalise genuinely ill people.

By Melissa Viney

[Photo of Anna Wood] Anna Wood, who has severe ME and is dependent on help from her home carer, was initially deemed ineligible for the new form of incapacity benefit. Photograph: Frank Baron

“Had Anna Wood realised that by bending down to pick up an object off the floor she would be deemed fit to work, perhaps the 33-year-old former academic would have thought twice. Wood, who had been forced to give up a prestigious fellowship position at Strathclyde University last year after developing severe ME, was made to perform the exercise as part of a medical test that all claimants of the new sickness benefit for ill and disabled people have to undertake….”

“…This tough medical test, called the work capability assessment (WCA), is at the heart of controversial changes to sickness benefit that were introduced last October when employment support allowance (ESA) replaced incapacity benefit (IB) for new claimants…”

Read full article here

Benefits and Work: DLA saved – for some

An update from Benefits and Work’s Steve Donnison.

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From Steve Donnison | 27 October 2009

DLA saved – for some

It’s a start, but nowhere near enough.

Health secretary Andy Burnham has said that he has “heard the concerns and worries about disability living allowance”. As a result, he has announced that:

“I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.”

Good news indeed . . . for some . . . for the moment.

But definitely not for the one and a half million people who depend on AA.

Nor for the for the three quarters of a million people aged 65 and over who receive DLA.

Not even for the 400,000 DLA claimants currently aged between 60 and 64, many of whom will have reached the age of 65 by the time labour’s proposed National Care Service is introduced.

Because, of course, DLA is not just paid to people under 65. You have to make your claim before you are 65, but you can then go on claiming indefinitely if your needs do not change.

Unfortunately, many organisations who should know better seem to have forgotten that – perhaps just as the government hoped.

Because Mr Burnham made no secret about why he made this announcement: he wants to shut people up. He said in his speech, given at a conference in Harrogate on 22nd October and also published on the Big Care Debate website:

“One avenue I do want to close down, however, is the debate and controversy over Disability Living Allowance.”

In that ambition, he seems to have succeeded, at least so far as some disability charities are concerned.

Immediately following Burnham’s speech, Disability Alliance sent out a press release stating that:

” …the Disability Living Allowance (DLA) benefit will not be affected by Government plans to merge some benefits with social care funding…Andy Burnham’s announcement will reassure disabled people that DLA is safe – for now at least.”

The Disability Charities Consortium told the media:

“This represents a real victory for disabled people who felt very strongly that the DLA should be retained and made their collective voice heard on this issue. “

Macmillan Cancer Support also issued a press release saying that:

“Whilst we are pleased the Government has said Disability Living Allowance (DLA) will not be used to meet the shortfall in social care funding, we remain deeply concerned that Attendance Allowance (AA) is still under threat.”

But that isn’t what Andy Burnham said at all. He said DLA for under 65’s is not being considered.

This was echoed by Yvette Cooper, the DWP secretary of state who told a meeting of the All Party Parliamentary Group on ME on 21st October that DLA for people of ‘working age’ is not under review.

It was also made clear by Burnham that there will be no transitional protection of existing awards for current claimants. Instead, ‘an equivalent level of support’ will be provided by your local authority.

Burnham’s announcement seems to have had the desired effect, however – the ‘debate and controversy’ over DLA appears to be over as far as some disability charities are concerned. Yet, in a little over two weeks time the deadline for submissions on the green paper ends.

It’s vital that the case for saving DLA for all claimants is still made. Only now there is a real worry that not only have the disability charities relaxed, but also that Burnham will claim that because 3,000 submissions to the Big Care Debate were made before his announcement that DLA for under 65s is safe, they should mostly be discounted.

If you don’t want the government to get away with closing down ‘the debate and controversy over Disability Living Allowance’ there are things you can do.

Contact disability groups you have a connection with and warn them that they still need to respond to the green paper in relation to both DLA and AA.

Respond to the Care Green paper yourself, again if necessary, making it clear that you are aware that DLA for under 65s is not under consideration and giving your views on axing AA and DLA for people aged 65 and over.

http://careandsupport.direct.gov.uk/greenpaper/execsum/

Email: careandsupport@dh.gsi.gov.uk

Rouse people to sign the No 10 petition, which is gathering real momentum again: it now has over 19,000 signatures and is at number 8 out of over four and a half thousand petitions on the site. Not bad going for a petition that has been running for less than two months.

http://petitions.number10.gov.uk/AttendanceA/

Tell your MP what you think or, better still, go and visit them and tell them face-to-face.

One final thought. The revelation that the government is considering slashing the income of 2.5 million older disabled claimants was made by Andy Burnham in a keynote speech last week.

The subject of that speech?

Outlawing ageism in the NHS.

Good luck,

Steve Donnison

Please feel free to forward or publish this article, which is also available online at: http://www.benefitsandwork.co.uk/news/latest-news/1118-dla-saved–for-some

Benefits and Work Publishing Ltd
www.benefitsandwork.co.uk
Company registration No. 5962666

POST YOUR NEWS
Finally, remember that you can post your news in the Benefits and Work forum, if you’re a member, at:

http://www.benefitsandwork.co.uk/forum?func=showcat&catid=13

and/or in the free welfare watch forums at:

http://welfarewatch.myfineforum.org/index.php

You can also keep up with news about opposition to the green paper at the Carer Watch campaign blog:

http://carerwatch.com/cuts/

Unfortunately, we’re getting so many emails on this subject that we are unlikely to be able to respond individually. But we do appreciate hearing your news and views and we do encourage you to publish them for others to read on the forums detailed above.

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From Steve Donnison | 30 October 2009

£20,000 shock birthday tax for all

A £20,000 tax bill on your 65th birthday sounds like the stuff of nightmares or political satire. But it’s one of the proposals in the care green paper which has so far received little attention as the government struggles to deal with the outcry over disability benefits cuts.

On the subject of which, people who receive the campaign newsletter will already know that the health secretary has now said DLA for the under-65s will not be used to fund the proposed new care service. But he has offered no such guarantee in relation to either AA or DLA currently paid to people aged 65 and over.

Combine a £20,000 tax bill with your DLA being stopped and 65th birthdays could become the most financially ruinous occasion of many people’s lives. Members can read the full story at:

£20,000 shock birthday tax for all
http://www.benefitsandwork.co.uk/news/members-only-news/1121-p20000-shock-birthday-tax-for-all

Of course, none of this may happen and you still have a chance to have your say about whether it should or not by visiting:

http://careandsupport.direct.gov.uk/greenpaper/execsum/

or emailing: careandsupport@dh.gsi.gov.uk

Employment and support allowance is also proving financially ruinous, not just to claimants being refused it, but possibly also to the private sector companies involved in the mandatory work-focused Pathways interviews.

We look at claims by a multinational company that delays in ESA medicals are leading to lost profits for them and to terminally ill claimants being forced to attend Pathways interviews.

The company also suggests that claimants who make real efforts to move towards employment before their medical may be losing their entitlement to ESA as a result and thus also losing the support that Pathways is supposed to provide.

Finally, in an effort to end on a slightly cheerier note, we have the news that CPAG have put an end to bullying attempts by the DWP to recover money from claimants where they have no legal right to get the money back.

It’s good to know that there’s still a little justice left out there.

Good luck,

Steve Donnison

DLA saved – for some
http://www.benefitsandwork.co.uk/news/latest-news/1118-dla-saved-for-some
Health secretary Andy Burnham has announced that: “I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.”

CPAG victory over DWP bullies
http://www.benefitsandwork.co.uk/news/latest-news/1117-cpag-victory-over-dwp-bullies
Children Poverty Action Group (CPAG) have won a court order to stop the DWP threatening legal action against claimants in order to recover money the department has no right to.

Lords warn attack on DLA and AA will be “very strongly resisted”
http://www.benefitsandwork.co.uk/news/latest-news/1116-lords-warn-attack-on-dla-and-aa-will-be-very-strongly-resisted
Disabled benefits claimants have finally found influential allies in their fight to save DLA and AA from being used to pay for the government’s planned national care service. Bizarrely, one of these allies may even be David Freud, now the shadow work and pensions minister.

Claimants who try lose benefits
http://www.benefitsandwork.co.uk/news/members-only-news/1119-claimants-who-try-lose-benefits
A private sector provider alleges that claimants risk losing their employment and support allowance (ESA) as a result of diligently taking part in the Pathways to Work programme. They also claim that delays in medical assessments are causing ‘confusion and distress to claimants’, with some terminally ill people being forced to attend work-focused interviews, and are hitting the private sector’s profits.

£20,000 shock birthday tax for all
http://www.benefitsandwork.co.uk/news/members-only-news/1121-p20000-shock-birthday-tax-for-all
It’s your 65th birthday. A pile of cards drop through the letterbox. There’s also two brown envelopes…

Action for M.E. and Facebook; CISSD Final Report finally published

Action for M.E. and Facebook; CISSD Final Report finally published

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Action for M.E. maintains a Facebook site at: http://www.facebook.com/actionforme

Over the past few weeks, questions and criticism around Action for M.E.’s governance, the way in which it relates to its membership, its policies and operation and its relationship with government have been raised by various users on its Facebook “Wall”.

Action for M.E. has chosen not to respond to these questions individually, on the Wall, itself, but by issuing a set of responses in a PDF document. The first document was this one: Facebook responses 20.10.09

A second, updated, set of responses was issued yesterday. It’s not clear whether these responses have been compiled by Action for M.E.’s new Policy Manager or by another member of staff, as the document is unsigned, but it’s interesting to see how the organisation has fielded these questions and concerns.

[To clarify – none of the questions for which responses were provided had been raised by me. I prefer to liaise directly with organisations for information, documents or for policy and position statements or, where applicable, obtain information via the Freedom of Information Act.]

Action for M.E. is becoming rather discomforted that its Facebook site is being used by some as a vehicle for raising political issues but you cannot take the politics out of ME. Users are already asking how the organisation intends to define “political”.

Those of us who were members, in 2003, of the joint charities’ message board “MEssage-UK” will recall how rapidly first Action for M.E., then AYME pulled out of this venture when faced with too many awkward questions; how the message board was then set for pre-moderation by the ME Association; how the moderator, Tony Britton, vetoed posts of a “political nature” without ever setting out how he was going to define what came under the heading of “political” and what did not; how the archives were sifted through for “contentious” messages by senior ME Association staff and then quietly excised without the authors being informed; how the board was closed down suddenly just days before the critical December 03 AGM in which Dr Shepherd was standing as a candidate in the Trustee elections…

When will our patient organisations learn that if they are going to place themselves on public platforms they first need to develop policies for the fielding of questions?

This latest set of responses can be opened in PDF format here:

PDF file: ONGOING FB Q and A document. 29.10.09

Answers to questions raised on the Action for M.E. facebook page, October 2009. Updated

or from Action for M.E’s website, here: http://tinyurl.com/ongoingFB-responses291009

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One of the responses is for a question raised (note, not by me) around the CISSD Project, for which Action for M.E. had acted as principal administrators throughout the project’s life (2003 to 2007).

In response to this question, on Page 23:

Question: “What was your involvement in the CISSD project Conceptual Issues in Somatoform and Similar Disorders for which you received a grant of 67k and why was this project kept so secretive from your members? Only information about it was released when freedom of information act requests were made that pushed you in to a corner where you had to confirm you were involved in it. Was this CISSD project set up with the purpose as suggested by other sources with the intent to look at changing the ME/CFS ICD-10 coding* to that of a Somatoform disorder?”

Action for M.E prefaces its reply with, “As a charity, Action for M.E. is not obliged to answer questions under the Freedom of Information Act but provides information of its free will, as resources allow.”

I should like to clarify that the Freedom of Information requests submitted by me in relation to the CISSD Project had been submitted to the Institute of Psychiatry. Information resulting out of these requests under the FOIA is available here: https://meagenda.wordpress.com/dsm-v-directory/information-obtained-under-foi-act/

One of my requests to the Institute of Psychiatry had been for a copy of the December 2007 “CISSD Final Report” from Dr Richard Sykes to Action for M.E. I had suggested to the Institute of Psychiatry’s Legal Compliance Office that the report ought to be provided with a erratum note, by Dr Sykes, addressing a number of errors he had made in the document that had come to light in June 09, when an unauthorised copy of the text had been placed in the public domain.

Unfortunately, what the Institute of Psychiatry were provided with by Dr Sykes, in order to fulfil the request, is evidently an earlier draft of the December 2007 text. It is missing the Contents page, and there are other disparities between the text that I was provided with and the Final version. No erratum note had been attached, either.

However, as part of its response to the Facebook question, Action for M.E. has now elected to publish two files. The first is a copy of the December 2007 CISSD “Final Report” to Action for M.E., the second, a copy of the “Co-ordinator’s Report”, with a covering letter and summary.

Action for M.E. has finally put these documents in the public domain!

Open PDF files here:

CISSD project report 1

The CISSD Project and CFS/ME Report on the CISSD Project for Action for ME

Conceptual Issues in Somatoform and Similar Disorders

Report to be read in conjunction with Co-ordinator’s Final Report

Richard Sykes December 2007

CISSD project report 2

Covering letter

The CISSD Project 2003-2007

(Conceptual Issues in Somatoform and Similar Disorders)

Summary

FINAL REPORT OF CO-ORDINATOR Richard Sykes PhD, CQSW

or from Action for M.E’s website, here:

http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf
http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%202.pdf

In August, Action for M.E. had published an article titled “Classification conundrum” on pages 16 and 17 of Issue 69 of its membership magazine, InterAction.

You can read a copy of the article here, in an ME agenda posting dated 25 August 2009:

“Action for M.E. stuffs the elephant back into the cupboard”

Note that although the Project had been initiated by Dr Richard Sykes, Dr Sykes does not appear to have contributed to this article – basically an apologia piece authored by Dr Derek Pheby.

In fact, Dr Sykes and his role as instigator and co-ordinator of the Project is not mentioned in the article at all. Nor is the Project’s source of funding – the charitable Trust run by Dr Sykes’ brother, Sir Hugh Sykes, a non-executive director of A4e, the largest European provider of Welfare to Work programmes.

The December 2007 “Final Report” document has historical significance. It also contains material (including an entire Appendix) which was omitted from the “CISSD Summary Report” that the ME Association published in June, this year, having negotiated with Dr Sykes for an article. (But having trumped Action for M.E., the MEA has made no comment whatsoever on the implications of the CISSD Project nor provided its membership with an analysis of the various papers and documents that came out of it. Nor has the MEA made any comment or published any information on the progress of the ICD-10 and DSM revision processes for which the CISSD Project was initiated and has fed into.)

The document sets out Dr Sykes’ views, opinions and perceptions (and misperceptions) that had not previously been publicly available. It would have been appropriate for Action for M.E. to have negotiated with Dr Sykes for this document to have been published in 2007. Instead, it kept the lid on this project – a project that had been chaired by Professors Michael Sharpe and Kurt Kroenke and had involved many influential, international researchers and clinicians from the field of liaison psychiatry and psychosomatics – several of whom are now directly involved in the revision of the American Psychiatric Association’s DSM-IV.

In August, I called publicly on Action for M.E. to publish a copy of the CISSD “Final Report” on its website and to preface it with an erratum note addressing both the errors of coding within “Appendix B” of the document and also Dr Sykes’ misconception that “Chronic fatigue syndrome” does not appear in ICD-10.

Chronic fatigue syndrome is listed in the International Statistical Classification of Diseases and Related Health Problems: 10th Revision Version for 2006, Volume 3, the Alphabetical Index (ICD-10 Volume 3).

For the entry in question, see page 528, top right hand column:

http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3

Since no erratum note has been published with these documents please be aware that where Dr Sykes has written “G33.3” and “G33.4” on Pages 12 and 13 of document:

http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf

this should read “G93.3” and “G93.4”.

Why has Action for M.E. published these documents without negotiating with Dr Sykes for an Erratum?

Why did Action for M.E. not publish these documents in August to accompany the article in InterAction?

*There is no coding for “ME/CFS” in ICD-10.
Postviral fatigue syndrome is classified in Chapter VI of ICD-10 Volume 1: The Tabular List at G93.3.
(Benign) myalgic encephalomyelitis is classified in Chapter VI of ICD-10 Volume 1: The Tabular List at G93.3.
Chronic fatigue syndrome is listed in ICD-10 Volume 3: The Alphabetical Index under G93.3.

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Text version of December 2007 CISSD “Final Report” here: CISSD Final Report to AfME 2007

Text version of December 2007 CISSD “Co-ordinator’s Report” here: CISSD PROJECT Coordinators Final Report

June 2009 Summary Report on CISSD as published by the ME Association

The Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by DSM-V Work Group members, Joel Dimsdale and Francis Creed was published in the June issue of the Journal of Psychosomatic Research:

Free access to both text and PDF versions of this Editorial at: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

For detailed information on the proposed structure of ICD-11, the Content Model and operation of iCAT, the collaborative authoring platform through which the WHO will be revising ICD-10, please scrutinise key documents on the ICD-11 Revision Google site:

https://sites.google.com/site/icd11revision/
https://sites.google.com/site/icd11revision/home/documents

For information around the DSM and ICD revision processes see DSM-V and ICD-11 Directory page: https://meagenda.wordpress.com/dsm-v-directory/

Benefit Busters C4: Catch up on episodes 1 and 2 on 4oD

Update: Information good at 8.30pm Monday, 7 September

Episode 2 now re-available to watch on 4oD at:

http://www.channel4.com/programmes/benefit-busters/4od#2935220

“They run your life, so you don’t have to” courtesy Gordon’s Good Idea

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Update: Benefit Busters: Episode 2, which screened on Thursday, 27 August, had been scheduled for repeat on Monday, 31 August. The repeat appears to have been pulled. It is reported that Episode 2 was briefly available online but that, too, has since disappeared.

There is no information about the change in scheduling or the removal of Episode 2 on the C4 or 4oD sites. So if you missed Thursday’s broadcast, as I did, please be aware that only Episode 1 is currently available to watch online via 4oD and that only two very brief clips from Episode 2 are now available.

Commentary here and here on WordPress New Deals Scandal site. Here and here on Indus Delta site.

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Benefit Busters Channel 4

http://www.channel4.com/programmes/benefit-busters

Benefit Busters

http://www.channel4.com/programmes/benefit-busters/episode-guide/series-1

Series Summary

In 2009, Britain will pay out more in benefits than it raises in income tax. Welfare and pension payments cost more than education, health or defence.

Now, as the government attempts to revolutionise the welfare system – controversially rewarding private companies according to their ability to coax people off benefits and into jobs – this documentary series follows the people on both sides of this new welfare state.

Series | Episode 1 | Benefit Busters [48 mins]

http://www.channel4.com/programmes/benefit-busters/episode-guide/series-1/episode-1

Thursday 20 August 9PM Channel 4

Hayley Taylor’s job is to persuade single mothers on benefits to go back to work.

The company she works for, A4E, which is helping to tackle the Government’s target of getting 70 per cent of lone parents into paid work by 2010, is the largest welfare reform company in the world [1].

A4E is run by multimillionaire entrepreneur Emma Harrison, who believes her business is ‘improving people’s lives by getting them into work.’

Until recently, the 700,000 lone parents receiving benefit didn’t have to look for work until their youngest child was 16. Soon, they must either work, or be looking for work, once their youngest child is seven.

At Doncaster A4E, Hayley runs a course called Elevate that aims to give lone parents the skills and confidence to enter the workplace and convince them they’ll be better off doing so. Cameras follow her group of ten single mothers during their intensive six-week course to prepare them for work.

Watch again on 4oD at:

http://www.channel4.com/programmes/benefit-busters/4od#2932683

Series 1 | Episode 2 | Benefit Busters [60mins]

http://www.channel4.com/programmes/benefit-busters/episode-guide/series-1/episode-2

Thursday 27 August 9PM Channel 4

Unemployment is rife in Hull, but for one company business is booming: A4E has won the lucrative contract to help get the long-term unemployed back to work. Mark Pilkington is an ex-soldier who hasn’t worked for 10 years. He welcomes help and within a fortnight he finds a job. But the joy of receiving his first pay cheque is short-lived; after just four weeks a business downturn results in Mark being laid off.

Facing a return to A4E and potentially a four-week wait to restart his benefit payments, Mark begins to wonder if there is more security in a life on benefits.

It appears to be a shockingly common perception amongst the clients at A4E, who are at the mercy of an increasingly casual labour market.

Watch again on 4oD at:

http://www.channel4.com/programmes/benefit-busters/4od#2935220

Two brief clips at:

http://www.channel4.com/programmes/benefit-busters/episode-guide/series-1/episode-2

Episode 3

Series 1 | Episode 3 | Benefit Busters

http://www.channel4.com/programmes/benefit-busters/episode-guide/series-1/episode-3

Thursday 03 September 9PM Channel 4
Sunday 06 September 3.20AM Channel 4

One of the government’s targets is to shift one million people off long-term sickness benefits and get them back to work.

In Oldham, the charity Shaw Trust has won the contract to implement this policy [2].

Sherrie Jepson, a former car saleswoman, has the job of selling the idea of employment to people who were previously considered too sick to work.

Keiron Tandy fell from a third-floor balcony while celebrating his 18th birthday in Turkey. He has metal pins in his back and has restricted mobility.

His family doctor had confirmed him as ‘unfit for work’ but under the new system he’s examined by an independent medical examiner employed by a private health care company, which will determine whether he is fit enough to return to work. Meanwhile, Sherrie starts to try to convince Keiron that he could work if a suitable job that allowed for his condition could be found.

Watch again on 4oD at:

http://www.channel4.com/programmes/benefit-busters/4od#2934042

[1] See previous posting:

Elephant in the Room Series Three: Channel 4: Benefit Busters, A4e and the Sykes brothers: http://wp.me/p5foE-1RY

The CISSD Project (Conceptual Issues in Somatoform and Similar Disorders), co-ordinated by Dr Richard Sykes, PhD, between 2003 and 2007, and administered by UK patient organisation, Action for M.E., was funded by The Hugh and Ruby Sykes Charitable Trust to the tune of £62,750. Dr Richard Sykes and Sir Hugh Sykes are brothers. Sir Hugh Sykes is a non executive director of A4e (Action for Employment) – the largest European provider of Welfare to Work programmes.

Sir Hugh Sykes has authored pamphlets for the right-wing think-tank “Politeia”: http://www.politeia.co.uk/about/default.asp

[2] See: 10 August Third Sector Online report on Shaw Trust:

“Shaw Trust accounts show crippling cost of DWP contracts: Charity blames Pathways to Work programme for huge deficit”

also see: Shaw Trust Press Release, 20 August :

“Shaw Trust Stars in Channel 4 Documentary ‘Benefit Busters'”

The Elephant in the Room Series Three: Action for M.E. stuffs the elephant back into the cupboard

Image | belgianchocolate | Creative Commons

Keywords

APA DSM DSM-IV DSM-V WHO ICD ICD-10 ICD-11 American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders World Health Organization Classifications DSM Revision Process DSM-V Task Force DSM-V Somatic Distress Disorders Work Group Somatic Symptom Disorders Work Group DSM-ICD Harmonization Coordination Group International Advisory Group Revision of ICD Mental and Behavioural Disorders Global Scientific Partnership Coordination Group ICD Update and Revision Platform WHO Collaborating Centre CISSD Project MUPSS Project Somatoform Somatisation Somatization Functional Somatic Syndromes FSS MUS Myalgic encephalomyelitis ME Chronic fatigue syndrome CFS Fibromyalgia FM IBS CS CI GWS

The Elephant in the Room Series Three:

Action for M.E. stuffs the elephant back into the cupboard

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The Conceptual Issues in Somatoform and Similar Disorders (CISSD) Project ran from 2003 and was wrapped up by autumn 2007. But the Project’s principal administrator, Action for M.E., has only just this week published an article around the Project.

Were it not for the fact that I and a small number of others have been agitating for information on the CISSD Project since early 2007, it is likely that Action for M.E. would have published nothing at all.

“Classification conundrum” is published on pages 16 and 17 of the August 2009 issue of Action for M.E.’s membership magazine, InterAction (Issue 69).

Note that although the Project had been initiated by Dr Richard Sykes PhD, Dr Sykes does not appear to have contributed to this article, which is authored by Dr Derek Pheby. In fact, Dr Sykes and his role as instigator and co-ordinator of the Project is not mentioned at all. Nor is the Project’s funder – the charitable Trust run by Dr Sykes’ brother, Sir Hugh Sykes, a non-executive director of A4e, the largest European provider of Welfare to Work programmes.

A considerable portion of this article’s second page is given over to an image of a man, most aptly holding up a large question mark. There have been a very large number of questions about the nature and implications of the CISSD Project, the most obvious one being: why has Action for M.E. sought to keep the lid on it for so long?

Action for M.E. could have used this space to expand on the nature of the Project and list the names of those involved in it.

But I guess there is no easy way of broaching that the Project was chaired by psychiatrists, Professors Michael Sharpe and Kurt Kroenke; or that the workgroup comprised a couple of dozen international researchers and clinicians from the field of liaison psychiatry and psychosomatics and that not a single researcher outside this field was a member of the workgroup; or that the sole patient rep on board just happens to have co-authored books on CFS with the Project’s UK Chair, Michael Sharpe; or that none of our other national ME patient organisations were consulted; or that as stakeholders, we were kept in the dark about this Project for six years; or that the workgroup included influential, international researchers like Francis Creed, Kurt Kroenke, Arthur Barsky, Charles Engel, James Levenson, Javier Escobar, Per Fink, Peter Henningsen, Wolfgang Hiller, Bernd Löwe, Richard Mayou, Winfried Rief et al… several of whom now sit on the DSM-V Somatic Symptoms Disorders Work Group and the DSM Task Force, at the very core of the APA’s DSM revision process.

Easier by far to pad out this apologia piece with a stock photo…

Action for M.E. could usefully have linked to the review paper published by Project leads, Sharpe, Kroenke and Sykes, in July 2007, that resulted out of the CISSD workshops, but hasn’t done so; it could have linked to the CISSD Project “summary report” published on the ME Association’s website, in association with Dr Sykes, in June; it could have published a link to a copy of the CISSD “Final report” it received from Dr Sykes, in December 2007, which contains material omitted from the “summary report” as provided to the ME Association – but it has not published this document, either.

For links to these documents and an unauthorised version of the December 2007 “Final report” see:

The Elephant in the Room Series Two: Status of the CISSD Project unscrambled: http://wp.me/p5foE-1GL

Appended is the article published in InterAction, yesterday, which represents all that Action for M.E. does want you to know.

Before it stuffs this Project back into the cupboard, I call on Action for M.E. to publish a copy of the December 2007 “Final report” by Dr Richard Sykes on its website, prefaced with an erratum note addressing the errors of coding within “Appendix B” of the document and also addressing Dr Sykes’ misconception that “Chronic fatigue syndrome” does not appear in the International Statistical Classification of Diseases and Related Health Problems: 10th Revision Version for 2006, Volume 3, the Alphabetical Index:

( Indexed on page 528, top right hand column: http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3 )

Once again, I call on the ME Association to publish a commentary and analysis of the CISSD Project, because to date, the MEA has made no comment whatsoever on the Project, itself, nor around the revision and “harmonization” processes towards DSM-V and ICD-11 that the CISSD Project was set up to inform. The ME Association has yet to publish a copy of the “summary report” provided by Dr Sykes in its own magazine, ME Essential.

In June, an Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report: Francis Creed and Joel Dimsdale was published in the Journal of Psychosomatic Research, for which Francis Creed is co-editor.

Neither Action for M.E., the ME Association, Dr Sykes or Dr Derek Pheby has published commentary on the most recent proposals of the DSM-V Somatic Symptoms Disorders Work Group, as set out in this Editorial and in a very brief report on the APA’s DSM-V webpages:

JPsychRes: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext
April ’09 report of the DSM-V Somatic Symptoms Disorder Work Group: http://tinyurl.com/DSMSDDWGApril09

I also call on the ME Association to approach Dr Sykes to set out the nature, aims and objectives of the “London Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project” for which he receives a research award of £27,000 per year through the Institute of Psychiatry for a new project that is once again being funded by the Hugh and Ruby Sykes Charitable Trust.

For information on the DSM-V and ICD-11 revision processes, and on the CISSD Project see: https://meagenda.wordpress.com/dsm-v-directory/

“Classification conundrum” by Dr Derek Pheby, InterAction 69, Action for M.E. membership magazine, August 2009, pp 16 and 17:

We are at a moment in time when the underlying pathology of M.E. is on the point of elucidation at last, writes Dr Derek Pheby. It is becoming apparent that the syndrome we know as M.E. consists of several different phenotypes, each with its own distinctive pathological basis…

These should in due course be recognised as individual disease entities, a process that would be helped by the identification of specific biomarkers. This will be a major historical change. It should bring to an end the long running concern about the nature of M.E. and what sort of illness it should be regarded as being. In particular, it will end the argument that has been a serious concern of many people with M.E., that many doctors and others have regarded the illness as primarily psychiatric and that this is reflected in the main classification systems by which diseases are recorded.

Much concern has centred around so-called ‘somatoform disorders,’ as people with M.E. have frequently been assigned to this category and its position in the main statistical classification in current use, which is the International Classification of Diseases (10th. revision) (ICD-10).

‘Somatoform disorders’ are located in the ‘Mental and behavioural disorders’ chapter of ICD-10. They are also a category within a specifically psychiatric classification, widely used by psychiatrists, entitled the Diagnostic and Statistical Manual (4th edition) (DSM-IV).

Both ICD-10 and DSM-IV are statistical classifications. They are simply tools that doctors and researchers need if they are to examine trends in the occurrence of disease and assess the effectiveness of treatments and other interventions designed to reduce the occurrence of disease or mitigate its impact.

There is a paradox though, in that medical research looks forward into a future in which medical knowledge is increasing all the time, while medical terminology, including classification systems, essentially looks backwards to a time when medical knowledge was less advanced than it is today.

Thus ICD-10, which was introduced into the UK in 1994, was the product of thinking that mostly took place in the 1980s. It is therefore now a quarter of a century old, so it is not surprising if it is now beginning to look somewhat frayed around the edges.

Indeed in two areas it was already out of date when it was introduced into the UK, having already been supplanted by new classifications developed as a result of new scientific knowledge acquired since ICD-10 was first developed. These two areas were brain tumours and lymphomas and the new classifications were the Kleihuis histological classification of neurological tumours and the REAL (Revised European American Lymphoma) classification.

CISSD

ICD-10 and DSM-IV will both soon be replaced by lCD-11 and DSM-V respectively. One input into the development of ICD-11 has come from a project entitled Conceptual Issues in Somatoform and Similar Disorders (CISSD). This was an international project, coordinated from Westcare.

When Action for M.E. merged with Westcare a few years ago, it found itself the residual legatee of this project. This caused unease among some people with M.E. who concluded, mistakenly, that the charity had committed itself to a party line which treats M.E. as a somatoform and hence essentially as a psychiatric condition. This is not the view of Action for M.E., which supports the World Health Organisation’s classification of M.E. as a neurological condition.

The CISSD project did not resolve the key question of whether the category of somatoform disorders should be retained in the classifications of mental disorders or not. However, it did recommend that if the category were to be retained, the diagnosis should not be made solely on the basis of the patient manifesting ‘medically unexplained’ symptoms but should require that the patient manifest ‘positive psychological criteria’ as well.

The authors also recommended that the subcategory in DSM-IV of ‘undifferentiated somatoform disorder’ – which is a pigeon hole into which it has not been uncommon for people with M.E. to be pushed – should be abolished.

These two changes should be beneficial to people with M.E. That benefit is likely to be marginal though, because it is not unknown for ‘positive psychological criteria’ to be wrongly attributed to people with M.E., in a process of post hoc rationalisation, in order to justify an inappropriate diagnostic label.

What is really needed to resolve this diagnostic problem is not a change in classifications but an increase both in scientific knowledge so that there is no longer any doubt as to how M.E. should be classified and in the respect in which people with M.E. are held and in the quality of health care they receive. There would be a few problems if all doctors and other health professionals deployed the same level of clinical knowledge and skill that the best do already.

Knowledge gap

Realistically, our knowledge of the various phenotypes within the M.E. umbrella is not yet adequate for this to be reflected in the revised classification. It remains to be seen also whether the CISSD recommendations are acted upon or not. However, one thing that is very clear is that ICD-11, on the day it is promulgated, will like ICD-10 already be in part out of date and will become increasingly so over the decade or so that it will be in use.

Much of the difficulty arises from the concept of ‘medically unexplained’ symptoms. There is nothing innate about this. What may be medically unexplained to one generation of doctors may be perfectly capable of explanation to the next, given the onward march of science.

It is entirely wrong to assign a person to a category of psychiatric illness because his or her symptoms are medically unexplained. Such a label points more to a deficiency in doctors because of their inability to explain symptoms, than in the patient. Indeed to assign someone to the wrong category on the basis of a false understanding of the nature of the illness and its context is an example of a well-known phenomenon which psychologists term ‘fundamental attribution error.’

Freud’s legacy

This tendency to regard people as having a primary psychiatric diagnosis when they are physically ill is probably a consequence of the baleful influence of Sigmund Freud on 20th century medicine.

Sarah Vaughan, a GP from Bristol, writing recently in the British Medical Journal, refers to Freud’s: “…most damaging legacy – namely, the widespread belief that all symptoms that elude diagnosis are psychosomatic in origin. This assumption has caused untold frustration and distress to patients who, on top of having illnesses that elude medical diagnosis, have to face being misdiagnosed as having psychological illness despite their protestations to the contrary.

“With the benefit of modern medical knowledge, Freud’s patients can be seen to have been relating histories that point clearly towards physical illnesses that weren’t known or diagnosable at the time.”

She concludes: “All too often, the medical profession ignores one of the most important lessons to be learned from Freud’s story – that, if we are unable to explain a patient’s symptoms, the reason may not be that the symptoms are psychosomatic but simply that our knowledge is imperfect.” (The dark side of Freud’s legacy (letter). BMJ 2009; 338: b1606).

Eventually, ICD-11 will be replaced by ICD-12, which in turn will rapidly become out of date.

CISSD is not a devious plot to “psychiatrise” M.E. Rather it should be seen as an honest attempt to rationalise an issue which has only arisen because medical knowledge is incomplete and which, at the end of the day, is no substitute for detailed scientific research to unravel the fundamental basis of this illness.

Dr Pheby is Project Coordinator for the National CFS/M.E. Observatory. He was formerly Chair of the Project Assurance Team at the NHS Centre for Coding and Classification. Read his report of the IACFS conference on p 12.

InterAction 69 August 2009

http://www.afme.org.uk

The Elephant in the Room Series Three: Channel 4: Benefit Busters; A4e and the Sykes brothers

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Keywords

The Elephant in the Room Series Three:

Channel 4: Benefit Busters, A4e and the Sykes brothers

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The recommendations of the CISSD Project and papers that resulted out of its workshops have fed into the revision processes towards DSM-V and ICD-11.

Dr Sykes is currently engaged in the London Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project for which he receives a research award from the Institute of Psychiatry for £27,000 per year.

This award is also funded by a grant from The Hugh and Ruby Sykes Charitable Trust.

We are still waiting for the ME Association and for Action for M.E. to provide analyses of the CISSD Project and commentary on the DSM and ICD revision processes.

I call upon both organisations to report on the nature and purpose of the MUPSS Project, too, for it is not yet known how the MUPSS Project is being carried out, who is involved in it or who its stakeholders are, but Dr Sykes is reported as having said that the Project has relevance to “all conditions characterised by medically unexplained symptoms, not just CFS/ME”.

Virtually nothing is known at present other than that the Project relates to what Dr Sykes perceives as “medically unexplained symptoms (MUS)” and that he includes within this category, “CFS/ME”.

Dr Richard Sykes and Sir Hugh Sykes are brothers.

Sir Hugh Sykes is a non executive director of A4e (Action for Employment) – the largest European provider of Welfare to Work programmes.

For links for information on A4e see: The WHO Somatisation Project: The Elephant in the Room Part Six

Sir Hugh has authored pamphlets for the right-wing think-tank “Politeia”, see:

http://www.politeia.co.uk/about/default.asp

“Politeia, a forum for social and economic thinking, opened in November 1995 as a focus for thinking on social and economic policy. Its aim is to encourage reflection, discussion and debate about the place of the state in the daily lives of men and women across the range of issues which affect them, from employment and tax to education, health and pensions.”

Current areas for work include:

Tax and benefits: a fairer framework for incentives;
The potential consequences of the Euro or other European measures for British social and economic policy, employment, taxation and trade;
International comparisons of educational standards;
Policies for high employment: the role of the state, the employer and the employee;
Covering for lost income: health, long term care, pensions and unemployment Welfare reform, pensions, benefits and taxation;
Constitutional change and stability;
Policing in the UK”

Sir Hugh is the author of

“Working for Benefit”
Hugh Sykes
£5.00

Although it continues to fall, unemployment remains a serious problem both economically and socially. Does it not make better sense, asks Hugh Sykes, to pay people to work than, as the present benefits system does, to remain idle? The workfare scheme he proposes here would achieve a reduction of at least 200,000 in unemployment over three years. Developing from and extending the government’s own schemes, it is – unlike other schemes suggested by left and right – both straightforward and detailed enough to be put into practice immediately. It gives incentives to employers to create, and to the unemployed to take, real productive jobs, whilst also providing opportunity to work where such jobs are not available. NERA, the leading experts on the economies of workfare, have provided technical advice and data for the scheme.”

and

“Welfare to Work – The New Deal: Maximising the Benefits”
Hugh Sykes
£5.00

The New Deal – the government’s welfare to work scheme – aims to increase employment in the long term by helping some of the unemployed to become more employable, thereby increasing the pool of effective labour and so facilitating sustainable economic expansion. Sir Hugh Sykes, until recently Chairman of the Sheffield Development Corporation, welcomes the scheme and its aims. But, he argues, there are serious problems in implementing the scheme which should be urgently addressed. The fact that the scheme does not aim to create new jobs in the short term will cause widespread disappointment, unless the public is given a better understanding of the scheme’s aims. Sir Hugh also contends that the scheme should aim at short-term job creation – something which will be possible if it can be flexibly implemented in the regions, rather than rigidly run from the centre, and if it takes proper account of regional and local priorities.”

Later this month, Channel 4 begins a series called “Benefit Busters”:

http://www.channel4.com/programmes/benefit-busters

Benefit Busters

Series Summary

In 2009, Britain will pay out more in benefits than it raises in income tax. Welfare and pension payments cost more than education, health or defence.

Now, as the government attempts to revolutionise the welfare system – controversially rewarding private companies according to their ability to coax people off benefits and into jobs – this documentary series follows the people on both sides of this new welfare state.

Watch again on:

http://www.channel4.com/programmes/benefit-busters/4od

Series | Episode 1 | Benefit Busters [48 mins]

Hayley Taylor’s job is to persuade single mothers on benefits to go back to work.

The company she works for, A4E, which is helping to tackle the Government’s target of getting 70 per cent of lone parents into paid work by 2010, is the largest welfare reform company in the world.

A4E is run by multimillionaire entrepreneur Emma Harrison, who believes her business is ‘improving people’s lives by getting them into work.’

Until recently, the 700,000 lone parents receiving benefit didn’t have to look for work until their youngest child was 16. Soon, they must either work, or be looking for work, once their youngest child is seven.

At Doncaster A4E, Hayley runs a course called Elevate that aims to give lone parents the skills and confidence to enter the workplace and convince them they’ll be better off doing so. Cameras follow her group of ten single mothers during their intensive six-week course to prepare them for work.

Next Episode: Thu 20 Aug, 9PM on Channel 4, Monday 24 August 4AM Channel 4

Series 1 | Episode 2 | Benefit Busters

Unemployment is rife in Hull, but for one company business is booming: A4E has won the lucrative contract to help get the long-term unemployed back to work. Mark Pilkington is an ex-soldier who hasn’t worked for 10 years. He welcomes help and within a fortnight he finds a job. But the joy of receiving his first pay cheque is short-lived; after just four weeks a business downturn results in Mark being laid off.

Facing a return to A4E and potentially a four-week wait to restart his benefit payments, Mark begins to wonder if there is more security in a life on benefits.

It appears to be a shockingly common perception amongst the clients at A4E, who are at the mercy of an increasingly casual labour market.

Date Time Channel
Thursday 27 August 9PM Channel 4

Series 1 | Episode 3 | Benefit Busters

One of the government’s targets is to shift one million people off long-term sickness benefits and get them back to work.

In Oldham, the charity Shaw Trust* has won the contract to implement this policy.

Sherrie Jepson, a former car saleswoman, has the job of selling the idea of employment to people who were previously considered too sick to work.

Keiron Tandy fell from a third-floor balcony while celebrating his 18th birthday in Turkey. He has metal pins in his back and has restricted mobility.

His family doctor had confirmed him as ‘unfit for work’ but under the new system he’s examined by an independent medical examiner employed by a private health care company, which will determine whether he is fit enough to return to work. Meanwhile, Sherrie starts to try to convince Keiron that he could work if a suitable job that allowed for his condition could be found.

*The Shaw Trust

Shaw Trust accounts show crippling cost of DWP contracts

By John Plummer | Third Sector Online |10 August 2009

Charity blames Pathways to Work programme for huge deficit

The Shaw Trust made a £2.8m loss in 2008/09 compared with a surplus of £7.4m the previous year, according to its annual report.

The charity, which is the largest voluntary sector provider of employment services for disabled people, blamed the loss on the huge start-up costs involved in delivering Pathways to Work programmes on behalf of the Department for Work and Pensions.

“The DWP funding structure is making it more difficult for charities to deliver services,” said Catherine A’Bear, chief officer for corporate affairs at the trust.

“We are one of the few charities still in the business of providing services for disabled people under DWP contracts, and when you see how heavily we have had to invest in it you can see why.”

She said the start-up costs involved in setting up services and recruiting staff for Pathways to Work were so high that private companies were increasingly the only ones that could afford to bid. “The voluntary sector is seen as a sub-contractor,” said A’Bear.

The trust’s annual income increased by £8.48m to £81.39m during the same period, of which £45.8m came from the DWP. But this was offset by rising costs. Wages and salaries rose from £37m to £43m.

John Briffitt, chairman of the trust, says in the annual report: “There’s no denying that the Shaw Trust’s financial performance, like that of many other organisations in our field, has been adversely affected by the challenging economic environment.”

He said “past prudence” had built up sufficient cash resources to help it cope.

The 2008/09 financial year was a turbulent one for the trust, with chief executive Ian Charlesworth put on gardening leave pending dismissal in July 2008. The annual accounts say he resigned on 12 December.

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For information on the development of DSM-V which is to be harmonised for congruency with ICD-11, and on the CISSD Project, see:

https://meagenda.wordpress.com/dsm-v-directory/

Compiled by Suzy Chapman
https://meagenda.wordpress.com

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The Elephant in the Room Series Three:

Action for M.E. stuffs the elephant back into the cupboard

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The Elephant in the Room Series Three:

Channel 4: Benefit Busters, A4e and the Sykes brothers

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