Number10 e-Petition response

Number10.gov.uk The official site of the Prime Minister’s Office

e-Petition response

Shortlink: http://wp.me/p5foE-2Ld

Update @11 February

A recent response from the Registrar of Members’ Interests, Office of the Parliamentary Commissioner for Standards also set out the status of All-Party Parliamentary Groups:

“All-Party Groups are informal cross-party groups that are not part of the official structure of the House of Commons. They are not funded by Parliament, nor are they accorded any powers by it.”

http://petitions.number10.gov.uk/MEInquiry/#detail

This petition is now closed, as its deadline has passed.

Submitted by Dave Loomes – Deadline to sign up by: 17 September 2009 – Signatures: 316

Petition update, 05 February 2010

The Prime Minister’s Office has responded to that petition. The response can be viewed here and is also appended.

http://www.number10.gov.uk/Page22366

More details from petition creator

The All Party Parliamentary Group’s Gibson Inquiry into ME in 2006 came to the conclusion that it was highly inappropriate for psychiatrists such as Simon Wessely and Peter White et al to act as advisor’s on illnesses like ME CFS for the Government and the DWP while working as consultants for the medical insurance industry for companies such as UNUM Provident. The insurance industry have a clear vested interest in classifying such illnesses as psychiatric conditions (despite the WHO classification of ME as a neurological condition ICD 10 G93.3) since they have to pay out less on policies.

The recommendations of the Gibson Inquiry called for an appropriate standards body to be set up to investigate these clear and alarming vested interests. This recommendation seems to have disappeared in a puff of smoke?

We the undersigned call for a immediate public inquiry into these inappropriate and blatant conflicts of interest!

Dave Loomes, the Petition Creator

Response published Friday 5 February 2010

http://www.number10.gov.uk/Page22366

E-petition response

We received a petition asking:

“We the undersigned petition the Prime Minister to take up Gibson Inquiry into ME recommendation of a Public Inquiry into vested interests.”

Details of Petition:

“The All Party Parliamentary Group’s Gibson Inquiry into ME in 2006 came to the conclusion that it was highly inappropriate for psychiatrists such as Simon Wessely and Peter White et al to act as advisor’s on illnesses like ME CFS for the Government and the DWP while working as consultants for the medical insurance industry for companies such as UNUM Provident. The insurance industry have a clear vested interest in classifying such illnesses as psychiatric conditions (despite the WHO classification of ME as a neurological condition ICD 10 G93.3) since they have to pay out less on policies. The recommendations of the Gibson Inquiry called for an appropriate standards body to be set up to investigate these clear and alarming vested interests. This recommendation seems to have disappeared in a puff of smoke? We the undersigned call for a immediate public inquiry into these inappropriate and blatant conflicts of interest!.”

Read the Government’s response

The independent inquiry mentioned in your petition stems from a report published in 2006. Neither the Department of Health nor the Department for Work and Pensions (DWP) were involved in producing the report and have no plans to respond to its findings. The recommendations in the report have since been surpassed by updated guidance from the National Institute for Health and Clinical Excellence for the management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

Professors Peter White and Simon Wessely hold Chairs in Psychological Medicine at London University. They have an international reputation in the clinical management of and research into several medical subjects, which include CFS/ME. As such, many organisations including government Departments will draw on their expertise. These doctors have been asked to provide factual clinical information about medical conditions and have no interest in the outcome of state benefit decisions or those made by the insurance industry. They have an ethical obligation to provide advice to the best of their knowledge and the Government is confident that they have done this in their advice to Departments.

Professor White has advised DWP in the development of guidance for Disability Living Allowance Decision Makers in a number of psychiatric conditions. He has also provided medical advice on CFS/ME and other related medical conditions. In addition to Professor White, DWP has also consulted with other medical experts with an interest in this condition including a rheumatologist, immunologist, occupational therapist, rehabilitation specialist, and physiotherapist. The guidance was also reviewed and discussed extensively with ME charities, welfare rights groups and their medical advisers who provided many helpful comments, which were included in the guidance wherever possible.

Professor White has provided his independent medical expertise to the insurance industry to help them to understand the medical issues when considering developing policies and deciding claims. As far as UNUM is concerned he has only ever attended one meeting organised by UNUM several years ago, but only as an independent specialist. This involvement in no way compromises the expert medical advice given to the Department, and his insurance consultancy work has always been known to the Department.

Professor Simon Wessely has not been involved in the development of CFS/ME guidance but has advised with guidance developed for some psychiatric conditions. He has served as a member of Dame Carol Black’s working group on employment. As far as UNUM is concerned Professor Wessely has not given advice, but has spoken at two UNUM sponsored medical meetings.

The term Chronic Fatigue Syndrome (CFS) is used to describe an illness that is characterised by physical and mental fatigue and fatigability.

A characteristic feature is fatigue/malaise that follows minimal exertion. People with CFS often describe the fatigue as being of a type and a scale beyond any other they have experienced. The illness may affect both physical and mental functioning, including cognitive function. Accompanying symptoms may include poor sleep, pain, poor concentration and memory, although this list is not exhaustive.

CFS is also known as Myalgic Encephalomyelitis (ME) and post-viral fatigue syndrome. There is some difference of opinion over whether ME is different from CFS; however, most authorities refer to the condition as CFS/ME.

CFS/ME is identified by its symptoms and disabling effects, and by excluding other medical conditions that could explain them. There are no confirmatory abnormal findings on physical examination, nor is there any specific investigation such as an abnormal blood test that is diagnostic. This does not mean that CFS/ME is not a real illness.

The classification of CFS/ME is confusing and controversial since there are five different World Health Organisation categories that could be chosen by a doctor to describe the illness. The Department of Health classifies the illness as neurological (G93.3). Since eligibility to State Benefits depends more on the severity and nature of disability and its effects, rather than the particular diagnosis, this issue is not central to the guidance developed by DWP. For the purpose of Disability Living Allowance the current law means that a claimant cannot be eligible for a higher rate of mobility unless his/her disability is considered “physical.” For this purpose, CFS/ME is classified as “physical.”

 

This petition had not to my knowledge been widely circulated. Had it been brought to my attention with a view to my promoting it on this site, I would have alerted the petition’s creator to the following and suggested that the wording of the petition might be amended.

Had the creators of this e-Petition checked the Register of All-Party Groups before submitting their petition, they would have established the correct name and status of the group which undertook the “Gibson Inquiry”.

The All-Party Parliamentary Group on ME was not responsible for undertaking the “Gibson Inquiry” or publishing the “Gibson Report”.

This unofficial inquiry had been undertaken by an ad hoc group set up by former MP, Dr Ian Gibson, specifically to carry out the “inquiry” because Dr Gibson had been unable to achieve the instigation of the “full”, “high level” and “independent” inquiry he had been seeking within the very short time frame he had set for himself.

Dr Gibson chaired the panel, himself, and it was Dr Gibson who decided whom he would invite onto his panel.

It is the case that the “Gibson Inquiry” panel included some office holders of the APPG on ME and others associated with it. But the inquiry was undertaken independently of the APPG on ME and it did not report to the APPG on ME, in the sense that it was accountable to the APPG on ME, it was accountable only to itself.

The group was registered with the Office of the Parliamentary Commissioner for Standards as “The Group on Scientific Research into ME” (GSRME). 

Most, but not all, groups are on the “Approved List” of All-Party Parliamentary Groups and Associate Parliamentary Groups. The Group on Scientific Research into ME was not on the “Approved List”.

Because of its registration status, under the Rules on All-Party Groups the GSRME group was bound by different requirements for its convening and different rules for its operation, one rule being that it was not permitted to refer to itself as an “All-Party Parliamentary Group”. 

In January 2007, Philippa Wainwright, Office of the Parliamentary Commissioner for Standards clarified that:

“Because the group is on the Register of All-Party Groups it is entitled to use the House emblems (eg the Portcullis) on any of its documents (eg reports, press notices, agendas) and on its website, and it is also allowed to give ‘House of Commons’ as its address on its letterhead.

“However, groups that are not on the Approved List are not allowed to use the terms ‘All-Party’, ‘Associate’ or ‘Parliamentary’ in their title, In the light of what you say, I shall write to the group reminding them of the rules on this point.”

And clarifying the authority of the report that was e-published, only, by the GSRME, in November 2006, Ms Wainwright wrote:

“In parliamentary terms all-party groups have no official status, and are viewed as informal. Their reports therefore have only the authority of those who produce them.”

In terms of status, then, the GSRME sat on the lowest rung of parliamentary groups beneath that of All-Party groups.

The group disbanded in May 2007.

A pro bono website was placed at the disposal of the group which remains online, drifting like the Marie Celeste, here:  http://www.erythos.com/gibsonenquiry/

The APPG on ME’s website is this one:  http://www.appgme.org.uk/

 

The more recent inquiry into NHS service provision for people with ME, chaired by Dr Des Turner (who will be standing down at the election, and thus from office of chair to the APPG on ME) was undertaken by the APPG on ME.

This inquiry has published only an “interim” document and it remains unclear whether it intends to publish a final report before the group is dissolved at the forthcoming election (as all All-Party Groups will be).

If the APPG on ME is to continue beyond the election, a new group with a new chair and a new committee with 20 “Qualifying Members” (parliamentarians) will need to be convened.

As with the NHS service provision inquiry, the “Gibson Inquiry” was an unofficial inquiry.

The report that came out of the “Gibson Inquiry” does not have the authority of either House of Parliament nor any government department; it was not a commissioned inquiry nor the product of a select committee, standing committee or any other Parliamentary Committee.  It had no funding, no dedicated administrative staff or resources and as stated above, was accountable only to itself. 

It is incorrect to refer to the “Gibson Inquiry” as a “Parliamentary Inquiry”, a “government report” or an “official report” since it is none of these: no department or minister was obliged to respond to its recommendations and Dr Gibson and his panel received no responses to their report.

The APPG on ME had planned to try and secure the interest a select committee in its findings and recommendations for its own inquiry into NHS service provision. But only a very brief document has thus far been circulated by the APPG on ME chair (and note, not as a document for comment or discussion).

 

The Secretary to the GSRME resigned the day after the report was published. The group began to disassemble and formally disbanded in May 2007.

The No 10 e-Petition Response notes that:

“For the purpose of Disability Living Allowance the current law means that a claimant cannot be eligible for a higher rate of mobility unless his/her disability is considered ‘physical.’ For this purpose, CFS/ME is classified as ‘physical.'”

The “Gibson Report” got this wrong (and there were other errors in the report).

In January 2007, Dr Gibson held a public meeting in London to discuss the content of the report and how it might be used as a campaigning tool. Dr Charles Shepherd (ME Association) and other national patient organisations and advocates had brought a number of significant errors, misconceptions, contradictions, omissions and ambiguities to the attention of Dr Gibson and what remained of his panel. Dr Gibson argued the toss over the issue of the panel’s misconception over entitlement to higher rate DLA, but he did eventually agree that the error the panel had made in its report would be corrected and that other problems with the report would be attended to. (Unofficial Transcript: Public Meeting of the GSRME, January 07)

But it was not corrected: once the public meeting to discuss the content of the report had been held, Dr Gibson was unable to get his panel to discuss making any amendments and the report remains entirely unamended. This misconception over higher rate DLA by the “Gibson panel” has been reiterated by the press on several occasions.

When drawing up the inquiry’s Terms of Reference, no procedures had been put in place by the panel for dealing with errors in the report; it was published without consultation and sent out to 600 odd MPs, to the Chief Medical Officer and various government ministers, complete with errors, before the ME community and ME patient organisations had had sight of it.

When it comes to inquiries be careful what you wish for.

I may comment at a later date on the content of the Number10 Response.

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