APPG draft TOR: Correspondence with the office of Dr Ian Gibson

Dr Ian Gibson MP is Secretary to the APPG on ME.  Dr Gibson set up the informal GRSME panel and chaired the “Gibson Inquiry”, himself.  We’re told that he has already committed to being a panel member for this proposed APPG inquiry into NHS service provision.  It remains unconfirmed whether APPG chair, Dr Des Turner, will be asking Dr Gibson to chair this proposed inquiry.

On 18 November, I sent the following to the APPG secretariat, a function shared between AfME and the MEA:

To: Heather Walker; Tony Britton, Sir Peter Spencer; Dr Charles Shepherd
Cc: Sarah Vero; Dr Des Turner; Dr Ian Gibson; The Countess of Mar

Sent: Tuesday, November 18, 2008
Subject: Re: Comments on draft Terms of Reference for APPG Inquiry into NHS service provision

Further to my response to the Draft TOR, of 12 November.

This morning I have published the 25% ME Group’s response to the draft TOR on my website. 

I note that the 25% ME Group has also called for an extension in order to enable wider consultation.

Ten days notice in which to submit comments on this document failed to make proper allowance for the needs of a disability group for adequate time in which to scrutinise this document and submit responses. 

Does the APPG plan to respond to the calls it is known to be receiving, reconsider and announce an extension?

I look forward to receiving a response.

I’ve received no response at the time of posting. 

Yesterday (19 November) I wrote to Dr Gibson at his parliamentary office:

To: GIBSON, Ian; VERO, Sarah Elizabeth
Sent: Wednesday, 19 November 2008
Subject: Your concerns about the ToR for APPG Inquiry into NHS service provision Importance: High

Dear Dr Gibson,

I do hope you and Sarah are keeping well.

I’ve had no response to my email of 18th (below) from the APPG on ME secretariat or from Des Turner about a reconsideration of the deadline for comments on the Draft ToR for this proposed inquiry into NHS service provision.

Many within the wider ME community share my view that individuals and registered patient organisations like the 25% ME Group and other patient representatives have been marginalised from informing these Terms of Reference.

The ten days’ notice announced on 4 November in which to submit comments simply wasn’t sufficient for a patient group with significant ill health and disability issues.

I’m given to understand that you share some concerns with those who have already contacted you.  As Secretary to the APPG, could I ask that you please consider talking to Des Turner and negotiating for an extension?  

[Copy of email from Suzy Chapman to APPG Secretariat, 18 November; Copy of response by Suzy Chapman to draft Terms of Reference to APPG Secretariat CCd to Dr Ian Gibson, Dr Des Turner, 12 November appended]

 

I’ve received the following response:

From: VERO, Sarah Elizabeth
To: Suzy Chapman
Cc: GIBSON, Ian
Sent: Wednesday, November 19, 2008 3:20 PM
Subject: RE: Your concerns about the ToR for APPG Inquiry into NHS service provision

Dear Suzy

Please be aware Dr Gibson and I are not responsible for administrating the APPG on ME or for organising the Inquiry into NHS Service Provision. As such we are not a point of contact for concerns with either the APPG generally or the Inquiry. However I have passed all your emails to the APPG Secretariat asking them to coordinate a response with Dr Turner.

Regarding your most recent email below – I will ask Dr Gibson to talk to Dr Turner about the concerns over the deadline.

Sarah Vero

Research Assistant to Dr Ian Gibson MP

Tel: 020 7219 4038

 

On 17 November, I wrote to The Countess of Mar: 

To: MAR, Countess
Sent: 17 November 2008 14:54
Subject: RiME; Comments on draft Terms of Reference for APPG Inquiry into NHS service provision

Dear Lady Mar,

1] RiME’s exclusion from your meetings with ME patient organisations

I should like to register my concern that although a non membership organisation which is registered with the Charity Commission as “The Chronic Fatigue Society” also known as “reMEmber” was extended an invitation to attend your meeting on 8 October that the patient representative organisation “RiME” was not included amongst those invited to attend.

I would welcome a clarification of the basis on which it was decided which patient organisations would be invited to participate in these meetings which you are chairing.

2] Comments on Draft Terms of Reference for APPG Inquiry into NHS service provision

I am most concerned that the APPG did not consult with the wider ME community over whether it would welcome an inquiry into NHS service provision at this particular point in time or whether, with the High Court Judicial Review of the NICE Guideline on “CFS/ME” listed for early next year, it would be judicious to wait until after the Court Hearing in February has taken place.

Nor has the APPG consulted with the wider ME community over what any inquiry held by the APPG should be looking into.

There is much disquiet about these Terms of Reference and about the project, as a whole. But with only ten days notice in which to prepare responses (for which there was a caveat of “minor amendments” only) and with so many unknowns relating to the processes and procedures through which this project would achieve its objectives – whatever those objectives might be – the ME community has been caught on the hop.

I do not consider that the APPG has sought to be inclusive of the wider ME community or made appropriate provision for the needs of a disability group for adequate time in which to scrutinise this document and submit responses.

There have been calls for an extension to the deadline but no extension has been announced by the APPG secretariat.

I append a copy of my response to the APPG secretariat to the Draft Terms of Reference.

Lady Mar replied that my concerns regarding RiME were noted.  That she had had nothing to do with the formulation [of the] APPG Inquiry, and that she suggested I address my questions to the Chairman of the Group.  That she would point out that the APPG on ME, like all APPGs, is there for the benefit of members of both Houses who wish to be informed about a particular interest. That she believed that it is, therefore, appropriate for the Chairman and his officers to decide what subjects they wish to tackle and how they intend to proceed.

I noted that Lady Mar did not provide a response to my request for clarification of the basis on which it was decided which patient organisations would be invited to participate in the meetings that she is chairing.

I will update should I receive any further response from the office of Dr Gibson, Dr Turner or the APPG secretariat.  In the meantime, I encourage you all to continue to send in your concerns, comments and responses to the draft Terms of Reference, irrespective of the unacceptably tight ten day deadline for comments that was announced by the secretariat, on 4 November. 

I am collating responses to the draft Terms of Reference, here on ME agenda, and also any replies respondees may have received.  If you would like your response published please forward a copy directly, or via the Contact tab, and please also forward a copy to Paul Davis, RiME  rimexx@tiscali.co.uk  

Don’t let the deadline discourage you from submitting your comments to the APPG secretariat – get a response in, anyway.

The draft Terms of Reference can be read here:  http://tinyurl.com/5ysbox  

Contact details for the APPG Secretariat here:  https://meagenda.wordpress.com/2008/11/05/appg-secretariat/

Responses already published on ME agenda can be read here:

Response from RiME

Response from Invest in ME

Response from 25% ME Group

Response from Suzy Chapman

Response from Greg Crowhurst

Response from Ciaran Farrell

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