Can Action for ME be said to be operating openly and democratically and is it fulfilling its obligations to the Big Lottery Fund?
As issues around the AfME National ME Observatory are currently being debated, it may be useful to revisit a posting from last year; this is prefaced with commentary on just one aspect of Action for ME’s management of the National ME Observatory Project:
Action for ME has yet to fulfil its obligation to the Big Lottery Fund to create a website or dedicated webpages for the purpose of communicating with the public, professionals and the ME community and for disseminating reports and results on the various projects being undertaken and for the publication of other information relating to the operation of the Observatory.
Even basic information such as the names of members of the Observatory Steering, Management and Reference Groups and other individuals or organisations involved in this Project, the organisations these individuals represent and their function within the Project Groups or within the Observatory Project as a whole, is still not publicly available and has not been published on Action for ME’s website or on a dedicated website.
[The following information taken from documents provided by the Big Lottery Fund under FOI Act.]
Total grant awarded by the Big Lottery Fund to Action for ME in March 2006 was £503,028
The revised yearly breakdown, as it stood on 1 November 2007, was:
Year One £213,105
Year Two £171,644
Year Three £118,279
Of this, £23,120 has been allocated for “Publicity and dissemination“, broken down over three years:
Year One £8,000
Year Two £7,300
Year Three £7,820
During the application assessment process, it had been agreed with the Big Lottery Fund that the Project would carry out certain tasks in each year of the grant.
Extract Page 6, Grant Offer, taken from document provided by the Big Lottery Fund under FOI Act:
Page 6: Project tasks
During the assessment of your application we agreed that your project would deliver certain tasks during each year of the grant.
We will ask you to report on how far you have met these each year. For more details of this see ‘Monitoring your grant’ on pages 10-13 of your Grant offer pack. The tasks that we agreed are as follows:
Year One – Action for ME
- Initiation of National ME Observatory collaboration, including media announcements in lay and professional media, and establishing communication links with the CFS/ME community.
- Website will contain some information on support for social inclusion of people living with CFS/ME and their families in England.
Year One – University of East Anglia, London School of Hygiene & Tropical Medicine, University of Hull
- Report of main findings of the systematic review of support for social inclusion of people with CFS/ME in England.
- Initial report of the pilot of disease register for CFS/ME.
Year Two – Action for ME
- Expansion of web-based communication facilities for Observatory, in order to improve facilities for dissemination of the results of the project, and preparation of strategy for succession funding.
- Workshops involving people benefiting from research.
Year Two – University of East Anglia, London School of Hygiene & Tropical Medicine, University of Hull
- Descriptive epidemiological study: completion of patients recruitment.
- Report of main findings of quality studies (studies IV, V and VI)
Year Three – Action for ME
- Dissemination of results through workshops reporting back to people with CFS/ME, conferences, publications, the media and web-based facilities, and submission of research proposals for further funding.
Year Three – University of East Anglia, London School of Hygiene & Tropical Medicine, University of Hull
- Descriptive epidemiological study: report of main findings
- Disease register: evaluation of pilot study and complete proposal for extension of register.
In Table 10, Page 46, of Action for ME’s funding application document “Establishing A Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) OBSERVATORY FOR SOCIALLY-INCLUSIVE EPIDEMIOLOGICAL AND SOCIAL RESEARCH INTO CFS/ME” submitted to the Big Lottery Fund in 2005, a figure of £2000 was projected for “The internet-website for CFS/ME Observatory” for the dissemination of information to a target audience of “lay public, CFS/ME community, Professional, carers, Stakeholders” with the delivery date given as the second and third years.
On 6 November 2007, the Big Lottery Fund Grant Officer had written to Dr Trish Taylor, CCd to Sir Peter Spencer, requesting an interim monitoring report detailing progress to date against agreed tasks and any changes to the project that may have occurred. In particular, comments on the project tasks for year one were requested.
According to the document “National M.E. Observatory Long Term Strategy to Funding, Derek Pheby, 14 September 2007″, work on the three year programme had begun in April 2007. In 2008, the Observatory Project would have entered Year Two – in which “Expansion of web-based communication facilities for Observatory, in order to improve facilities for dissemination of the results of the project, and preparation of strategy for succession funding” had been an agreed task.
The Project will shortly be entering Year Three and Action for ME are significantly behind schedule over the creation of the website/webpages for the dissemination of information relating to the Observatory.
In late November 2008, Action for ME’s Heather Walker advised one enquirer that “The Observatory will have web pages accessible via Action for M.E.’s website” and that these are being produced by Action for ME’s IT Manager in association with the University of East Anglia but there is still no web presence for the Observatory.
How much longer is it going to take Action for ME to fulfil this requirement of their grant award?
Is the Big Lottery Fund Grant Officer aware that no website for the dissemination of information about this project is in operation; that AfME has failed to set out lines of accountability for those responsible for the management of this project and for the oversight of the spending of £500,000 of public money and that no channel of communication exists between the project’s management and the public because this has yet to be facilitated? Therefore the operation and progress of this project and those responsible for it cannot be monitored by the public because this information is not available for public scrutiny.
Disclosure by AfME of the composition of the Steering and Management Groups for the National ME Observatory
[First published on ME agenda on 29 October 2008]
“The irony of this is, that as a result of AfME and the Observatory Project Group Co-ordinator’s decision not to place the information I had requested in the public domain the result has been that I have actually ended up with a vast bundle of stuff – the research proposal application documents, the research project costings, copies of the three independent expert review reports, the business plan, the research agreement, variation reports, copies of letters and emails between AfME/Observatory Project personnel and The Big Lottery Fund, internal and external correspondence relating to applications submitted by other individuals under FOI for information about the Observatory Project; staff costings, job specs, costings for equipment, travel, workshops, conference attendance, translations, transcriptions, video equipment, printing, consumables, development of a website…”
AfME finally coughs up with a list of names!
I’d like to set the following on record:
On 1 October 2007, I first contacted Dr Derek Pheby, AfME National Observatory Project Co-ordinator, (CCd to AfME’s Sara Brooks):
“Following the 16 June meeting of The ME Association Board of Trustees, Dr Charles Shepherd published a summary of key points emerging at that meeting. In his summary, Dr Shepherd writes:
‘A meeting of the ME Observatory Steering Group took place on the same day. As this clashed with the Board meeting, the MEA could not, unfortunately, be represented.’
To the best of my knowledge, The ME Association has not made any announcement to this effect, but I assume from what Dr Shepherd has written in his summary that a representative of the ME Association, possibly Dr Shepherd, himself, has been appointed to the ME Observatory Steering Group.
Issue 61 of AfME’s InterAction magazine carries an update on the National Research Observatory which includes a list of lay members appointed to the Steering Group and a list of those appointed to a Reference Group but there is no mention of Dr Shepherd’s appointment or of any others who may have been appointed over and above lay members.
I would like to make a formal request for the following information:
1] Have any other representatives of national ME patient organisations (other than the MEA and AfME’s own staff and Trustees) been allocated seats on the Steering Group and through what process were these seats allocated?
2] Other than any ME patient organisations, have any other organisations or individuals (other than those specifically named lay individuals that comprise the Steering and Reference Groups and are named as such in InterAction) been allocated seats on the Steering, Management or any other group or groups that comprise the Observatory Project and through what process were these seats allocated?
3] Would you please provide a complete list of members of:
The Steering Group (both lay and professional)
The Management Group
The Reference group
Any other individuals or organisations involved in this Project
The list to include:
Name of individual
Organisation Represented (where appropriate)
Function within Project Group or within Project as a whole
Contact details for individuals/organisations are not required.
If a Line Management organisational chart has been produced then a copy of this would also be welcomed.”
Apart from confirming that Dr Shepherd (MEA) did indeed hold a seat on the Steering Group, Dr Pheby provided no responses to these questions, stating that “Those lay members who were appointed as a result of the exercise all consented to have that fact reported in Interaction. We were obliged to seek that consent as a result of our obligations under the Data Protection Act, which restricts what further information we can disclose about other participants in the project whose consent to disclosure has not at this stage been sought.”
Dr Pheby evidently had no inclination to obtain consent in order to release a list of names to me nor did he appear to consider that the information I had requested should already have been placed in the public domain.
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