APPG on ME: Changes to the secretariat service

APPG on ME: Changes to the secretariat service

For some years now, the provision of secretariat services to the APPG on ME has been shared between Action for M.E. and the ME Association, with the tasks of minute taking and the preparation of agendas and writing up of minutes alternating between these two patient organisations.  This has sometimes led to confusion over which organisation is anticipated to be issuing the agendas and compiling the minutes from one meeting to the next.

There have also been issues around the lack of a defined and effective channel of communication between members of the ME community and regional and local ME group reps and the APPG committee.

It has not been clear in the past, whom one should approach in connection with requests for the placement of specific topics on the agenda or with queries relating to forthcoming or previous meetings.  One can often find oneself being passed back and forth between the APPG secretariat, the Office of the APPG Secretary, Dr Ian Gibson, and the APPG Chair, Dr Des Turner, with Dr Turner’s Office rarely responding.

Given that no schedule is drawn up at the beginning of the parliamentary year for how many meetings will take place and in which months, and with provisional meeting dates frequently postponed in order to accommodate the availability of speakers, this compounds the general communication difficulties that exist between the APPG committee, the secretariat and the ME community in whose interests the APPG on ME was first set up.

There is also the feeling that the influence of the secretariat representatives over what topics get placed on the agenda for discussion and which speakers are invited to attend meetings has, in the past, favoured the interests of the four main national patient organisations and that the APPG on ME should be more responsive to and more reflective of a wider range of views.

I was told by Tony Britton (ME Association Press and Publicity), in February, that he had stood down from secretariat duties.

I endeavoured to obtain a clarification from the Office of Dr Ian Gibson as to who would be taking on the duties that Tony Britton had undertaken on behalf of the MEA or whether, in future, the secretariat function would devolve entirely to Action for ME.

This query was passed by Sarah Vero (Dr Gibson’s researcher) on to Dr Turner. This in turn, appeared to have been passed back to AfME’s Heather Walker, who responded by forwarding me a copy of the Agenda for the 1 April meeting, although none of these answered my question whether in future, the secretariat to the APPG would become sole responsibility of AfME – an example of how queries around the APPG are passed around like a parcel at a party.

While we are waiting for clarification, there are some developments that I need to draw attention to:

At the meeting of the APPG on ME, on 1 April, attendees were surprised to find the BBC were videoing part of the meeting for inclusion in a forthcoming edition of BBC1’s “The Politics Show”. It had not been generally known that this was going to be taking place during this meeting and had not been included on the Agenda.

(For an update on the content and date of this broadcast see: )

Additionally, a stenographer had been present at the meeting, recording the proceedings and Dr Turner is reported as having said that a transcript of the meeting would be available soon. This is not usual practice for these meetings but Dr Turner did not appear to feel the need to explain the reason for the stenographer’s presence or to what purpose a transcript of the proceedings of the meeting would be put.

There seems to be some confusion within AfME staff as to the purpose of this transcript.  AfME’s Communications Manager, Heather Walker, has been asked to clarify the reason for the stenographer’s presence and I will update on the purpose and availability of this transcript when I have received a clarification. 

We are still waiting for minutes of this meeting to be published and also for the dedicated website for the APPG Inquiry into NHS services to be launched. These delays are of considerable concern, given that the deadline for people to submit questions to Dr Turner around the patient survey and service provider questionnaires, via the website or in writing, is 5 May – which is fast approaching.

The second issue is the creation by AfME of a Senior Management level Policy Manager/political lobbyist position. See previous posting for a copy of the full Job and Person spec or go to:

Policy Manager job description

According to the Job Spec, one of the various roles of the post holder will be to:

“7. Provide the Secretariat for the All Party Parliamentary Group (APPG) at
Westminster, liaising with the office of the Chair of the APPG and others to
organise meetings, prepare minutes and agenda and ensure timely posting of
information on our website, facilitate actioning of decisions eg. by
drafting letters, maintain APPG files.”

Which could imply that AfME is intending to strengthen its relationship to and involvement in the operation of the APPG.

As noted above, it remains to be confirmed whether the MEA will be retaining an involvement in the secretariat function or whether, in future, this role is going to become sole preserve of AfME. It would be helpful if the ME Association could clarify the extent of its future commitment to the provision of APPG secretariat.

If AfME’s Policy Manager were to also function as a channel of communication between the public and the APPG, then having a centralised point of contact might be seen as advantageous, given the existing barriers to effective communication between the ME patient community and the APPG committee.  Another view is that AfME may seek to act as gatekeepers, controlling access to the APPG committee.

To what extent, then is the post-holder anticipated to involve themselves in the day to day administration of APPG business, over and above the preparation of agendas and minutes?

The Job spec lists organising meetings and facilitating “actioning of decisions eg. by drafting letters” and maintaining APPG files. Does this mean that AfME is seeking to develop greater control over the functioning and operation of the APPG?

When Tony Wright, MP was Chair of the APPG, he maintained a resource of APPG minutes, reports etc on his own parliamentary website. Although agendas, minutes, notices and related APPG material are archived on a number of sites – AfME’s website, the MEA’s website (and also here on ME agenda), I have always considered that the APPG on ME should be maintaining a website or blog platform of its own. This need not be an expensive or high maintenance proposition.

Of course, provision of the secretariat to the APPG is only a small part of the Policy Manager’s remit.  But if, with the creation of this new post, AfME is taking the opportunity to broaden out the scope of the role of APPG secretariat, will AfME be seeking to:

a) Take greater responsibility for the functioning and operation of the APPG?
b) Become the central point of contact between the public and the APPG committee?
c) Become authors for and principal disseminators of information for the APPG by maintaining dedicated webpages on behalf of the APPG committee as an extension to its current practice of publishing notices, minutes and agendas on its News pages?

In the context of the creation of this new post of Policy Manager and political lobbyist, and AfME’s intentions to strengthen its links with parliament and government departments and our longstanding concerns around AfME’s existing relationship with government, this level of integration with the APPG would discomfort me. 

A statement setting out Action for M.E. and the ME Association’s respective future responsibilities towards the APPG and identifying channels of communication between the public and the APPG committee would be appropriate.

Suzy Chapman
27 April 2009