Category: APPG on ME Agenda

Next APPG on ME meeting: Delay in production of the Minutes

Heather Walker, Communications Manager, Action for M.E. has advised me, this morning, that the minutes of the last meeting will be delayed.

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

Ms Walker writes @ 25 November

On behalf of the APPG on ME Secretariat, my apologies for the delay in the production of minutes of the last meeting.

We are still awaiting arrival of the verbatim transcript, kindly produced by a Hansard stenographer, on which the minutes are based.

As has been pointed out, the APPG has a policy that any comments on the APPG minutes and transcript be sent in to the APPG Secretariat one week before the meeting. The meeting scheduled for Wednesday the 2nd of December would therefore indicate a deadline for comments and amendments to be submitted by Wednesday the 25th of November

The delay means the usual procedure will have to be changed – what to will depend on when the transcript and minutes become available.

We will circulate them as soon as possible.

Meanwhile, the agenda for next week’s meeting is as follows:

1. Welcome by the Chairman
2. APPG Report on the Inquiry into NHS Services
3. Speaker: Mike O’Brien MP, Minister of State for Health Services
4. Minutes of the last meeting
5. Matters arising

– APPG legacy paper (in preparation for the General Election)

– New research: murine leukaemia virus-related virus (XMRV)

– Accessibility of venues for future meetings

6. Welfare update

– Employment and Support Allowance

– Welfare Reform Bill

7. Any other business

8. Date of next meeting

Heather Walker

Communications Manager
Action for M.E
Direct line: 0117 930 1323

Action for M.E. is the leading charity dedicated to improving the lives of people affected by M.E.
Action for M.E., Canningford House, 38 Victoria Street, Bristol BS1 6BY, 0117 927 9551
Registered charity number: 1036419. Registered in Scotland: SCO40452
www.afme.org.uk

APPG on ME: Agenda meeting 2 December 2009

APPG on ME: Agenda meeting 2 December 2009

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

 

The APPG on ME maintains a website here: http://www.appgme.org.uk

Agenda APPG for ME 2 Dec 2009

APPG agenda 02/12/2009

19 December 2009

The next meeting of the All Party Parliamentary Group (APPG) on M.E. will be held 3.15-4.45pm, Wednesday 2 December 2009 in Committee Room 15, House of Commons.

1. Welcome by the Chairman

2. APPG Report on the Inquiry into NHS Services

3. Speaker: Mike O’Brien MP, Minister of State for Health Services

4. Minutes of the last meeting

5. Matters arising

– APPG legacy paper (in preparation for the General Election)

– New research: murine leukaemia virus-related virus (XMRV)

– Accessibility of venues for future meetings

6. Welfare update

– Employment and Support Allowance

– Welfare Reform Bill

7. Any other business

8. Date of next meeting

APPG on ME: Next meeting 2 December 2009 progress report

1] APPG on ME: Next meeting 2 December 2009 progress report;

2] Agenda for next meeting of Countess of Mar’s caucus group Forward-ME;

3] Clarification regarding membership of the APPG on ME

Shortlink: http://wp.me/p5foE-2n3

Yesterday, 12 November, I contacted Action for M.E.’s Policy Officer for an ETA for the Minutes and transcript of the last meeting of the APPG on ME (21 October). I also enquired when the Agenda for the 2nd December meeting was anticipated to be issued.

Tristana Rodriguez, Action for M.E.’s Policy Officer, has advised that the transcript typist for the last APPG meeting had said that a full transcript could be expected within four weeks or so. A transcript has yet to be provided and this would be chased up by Ms Rodriguez, next week, as the transcript typist was currently away.

I was advised that since the Minutes would be produced using the transcript for reference, no timeframe could be given for the publication of the Minutes until the transcript has been provided to the secretariat.

As far as the Agenda for the meeting on 2 December goes, secretariat were in the process of finalising details with the invited speaker.  When this had been achieved, an Agenda would be circulated. When the Minutes and Agenda have been issued I will publish copies, here.

Before the October meeting, a group of members from the ME community met up for coffee.  If you are interested in attending the December meeting and would like to meet up with a few others before the meeting starts drop me an email via the Contact Form with “December APPG meeting” at the top and I can put you in touch.

Link Back

MEA summary of meeting of APPG on ME (21 October 2009) and APPG Legacy paper

Foward-ME

Forward-ME is a caucus group to the APPG on ME, convened and chaired by the Countess of Mar. Lady Mar decided which patient organisations would be extended an invitation to participate in her group and which would not. Unlike the APPG on ME, Forward-ME meets behind closed doors and members of the public are not able to attend, even as observers. Lady Mar convened this caucus group out of a desire to find “common ground” amongst the main patient organisations and the group appears to have superseded the now dormant ME Alliance.

No-one consulted with Lady Mar’s constituency of interest – the ME community – over whether a group which meets between meetings of the APPG, behind closed doors, would be welcomed and if so, what the extent of its remit should be, on what basis it would be decided to whom membership would be offered and how the wider ME community would inform its agenda. Forward-ME includes the organisation “ReMEmber” which promotes publications by Professor Michael Sharpe on its website; members also include representatives from Action for M.E., the MEA, AYME, the Young ME Sufferers Trust, Invest in ME, BRAME  and ME Research UK.

The 25% ME Group had been members but has since withdrawn support for Forward-ME. Invest in ME has already published its concerns in a statement (below) and its continued membership of the group is tabled for discussion at the next meeting of Forward-ME. 

Status 23rd March 2009

http://www.investinme.org/Article-182%20CoM%20Cooperation%20Meeting%2001.htm

 

A website for Forward-ME is maintained here where Minutes of previous meetings can be read and I append a copy of the Agenda for the next meeting:

http://www.forward-me.org.uk/24th%20November%202009.htm

FORWARD-ME

AGENDA FOR MEETING TO BE HELD

ON TUESDAY 24 NOVEMBER 2009

IN THE TELEVISION INTERVIEW ROOM, HOUSE OF LORDS

FROM 1.30 PM TO 3.00 PM.

1. Apologies.

2. Dr James Bolton, Deputy Chief Medical Adviser to the DWP.

3. Question and answer session.

4. Minutes of the meeting held on 8 July 2009.

5. Matters arising.

          i) Lightning Process

          ii) APPG Inquiry

          iii) MRC Project

          iv) Invest in ME membership of Forward-ME

6. Welfare Reform Bill.

7. Current Research.

8. Correspondence.

9. Any Other Business.

10. Date of next meeting.

Minutes of previous APPG on ME Meetings

The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:  http://www.appgme.org.uk/minutes/mintues.html

Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

None of the above are members of the APPG on ME.

In the case of Associate Parliamentary groups, applications for membership may be accepted by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

The APPG on ME group’s current office holders and the twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi389.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME and The ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

AfME and the MEA have alternated the task of minute taking and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

So none of the five national registered membership ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.

ME Research UK : a research organisation and a registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are sometimes listed as attendees in the minutes of meetings; their contributions to these meetings are minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

Next APPG on ME: Wednesday, 21 October 2009

All Parliamentary Party Group on ME   http://www.appgme.org.uk/index.html

The next meeting of the APPG on ME is scheduled for

 

1.30-3pm, Wednesday 21 October 2009

Committee Room 20, House of Commons

 

AGENDA

1. Welcome by the Chairman

2. Speaker (TBC. The Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions, has been invited.)

3. Minutes of the last meeting – available here

4. Matters arising

– APPG Inquiry into NHS Services

– Future Chairmanship

– Future Work of the APPG

– APPG legacy paper (in preparation for the General Election)

5. Green Paper, Shaping the Future of Care Together

6. Welfare update

– Employment and Support Allowance

– Welfare Reform Bill

7. Any other business

8. Date of next meeting

Note: Legacy Paper

One of the items on the agenda is the drafting of a legacy paper, outlining areas of work for the APPG, in the event of a change of officials following the General Election. The Chair, Dr Des Turner, has already indicated his intention to stand down.

Members of the APPG and people with M.E. are invited to put forward three or four bullet point suggestions for the key issues and objectives for the APPG, following the General Election. Please e-mail your ideas to the Secretariat, who will produce a draft consensus document from the results. Submissions received by 5pm 19 October will be considered for inclusion in a draft legacy paper to be tabled 21 October. Later submissions should be received no later than 20 November, to be considered for inclusion in the second draft.

Issued on behalf of: Des Turner MP, 179 Preston Road, Brighton BN1 6AG. Tel: 01273-330610.

Email: turnerd@parliament.uk

By: Heather Walker, for the Secretariat (Action for M.E. and the ME Association)

Ed: All enquiries in connection with this meeting to APPG on ME Chair, Dr Des Turner, or to APPG on ME secretariat

 

Minutes of previous APPG on ME Meetings

The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:  http://www.appgme.org.uk/minutes/mintues.html

Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

None of the above are members of the APPG on ME.

In the case of Associate Parliamentary groups, applications for membership may be accepted by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

The APPG on ME group’s current office holders and the twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi389.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME and The ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

AfME and the MEA have alternated the task of minute taking and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

So none of the five national registered membership ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.

ME Research UK : a research organisation and a registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are sometimes listed as attendees in the minutes of meetings; their contributions to these meetings are minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

Change of venue for APPG on ME meeting, Wednesday 8 July

Update @ 5.30 pm: Yet another change of room!

Heather Walker (Action for M.E. secretariat) advises:

The venue for tomorrow’s AGM of the All Party Parliamentary Group on M.E. has been changed again and will now take place in Committee Room 13, House of Commons. This is a change from this morning’s notice (previous bookings in Boothroyd Room, Comm Rm 19, Comm Rm 20).

Dr Des Turner’s office tells us room bookings have been changed at short notice several times this week. They will make sure that notices are posted at the House of Commons if there are any further changes to the venue.  The meeting still takes place 1.30pm – 3pm. Information correct at 16.24 hrs on 7 July.

Heather Walker
Communications Manager
Action for M.E.

—————————-

APPG on ME meeting – Wednesday 8 July

I am advised that the ME Association has just been notified by Dr Des Turner’s office about a change of venue for tomorrow’s APPG on ME meeting.

Tomorrow’s AGM and business meeting of the All Party Parliamentary Group on ME will now be held in the Boothroyd Room in Portcullis House (note – room change from Committee Room 19). The time stays the same: 1.30-3pm.

 

Agenda and Minutes of previous meeting (1 April 2009) here:

https://meagenda.wordpress.com/2009/06/21/appg-on-me-agenda-for-next-meeting-wednesday-8-july-2009/

Next meeting of the APPG on ME: Wednesday 8 July 2009

Three upcoming events this week:

APPG on ME meeting

The next meeting of the All Party Parliamentary Group on M.E., chaired by Dr Des Turner MP, will take place on Wednesday 8 July 2009, Committee Room 19*, House of Commons, 1.30-3pm.

*Please note this change of venue which was previously given as Committee Room 20

The meeting will also serve as the group’s AGM.  Committee officers holders for the next parliamentary year will be elected (Dr Gibson is no longer Secretary to the APPG on ME having recently stood down as MP for Norwich North) and the future work of the APPG on ME will be discussed. No invited speaker for this meeting has been announced.  Members of the public are permitted to attend these meetings (please see my note of clarification around the status of membership of the APPG on ME at the end of this post).

Agenda for Wednesday’s meeting

 

APPG on ME Inquiry into NHS Services for people with ME

There is considerable confusion about the dates and times for these sessions since the APPG on ME website states:

“Evidence sessions are likely to commence 14 July 2009 and a later notice will give details of these.”

But no notice has been issued setting out the dates and times for these oral hearings/evidence sessions by either the APPG on ME committee, the inquiry panel Chair, Dr Turner, or the secretariat to the APPG on ME.

According to unofficial reports, oral hearings for this inquiry are being held, this week, on Thursday, 9 July (the day after the APPG on ME meeting) and last week, invitations were apparently received by some members of the ME community to attend in order to present oral evidence.  No complete list of attendees has been issued.

It is assumed that (as was the case with the oral hearings for the “Gibson Inquiry”) these hearings are intended to be held in public.  Why Dr Turner has failed to issue a notice and why the secretariat to the APPG on ME has failed to chase Dr Turner for one, isn’t clear.

Some readers will recall that in 2006, two of the oral hearings for the “Gibson Inquiry”, which had been intended to be held in public, took place virtually in camera because Dr Gibson’s administrative support staff failed to circulate a notice advertising the dates and times of these meetings and the names of those invited to give evidence.  So very few of those who would have liked to have attended these two hearings were in a position to do so. 

It is disturbing that once again, no agenda for the first of these oral hearings has been circulated by Dr Turner.  There are also concerns that some of those who have made written submissions have received no acknowledgement of their submission, whereas others have. 

If you were hoping to attend the oral hearings please contact Dr Turner, directly, at the email address or through his parliamentary office as I have no information, myself, about the hearing said to be taking place on Thursday this week.  If any information filters out I will post an update.   

Dr Des Turner:  turnerd@parliament.uk   Parliamentary Office: 020 7219 4024

This is, in any case, a poor choice of week for the ME community for the holding of oral hearings/evidence sessions – with the APPG on ME meeting on Wednesday and the Royal Society of Medicine’s “Medicine and Me” series event taking place on Saturday, 11 July.  Attendance of the RSM event is by reservation of seat.  

For information on the RSM “Medicine and me” series event: ME and CFS – Hearing the patient’s voice, Saturday, 11 July see:

http://www.rsm.ac.uk/academ/x2g106.php

———————-

Minutes of previous APPG on ME Meetings

The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:  http://www.appgme.org.uk/minutes/mintues.html

Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

None of the above are members of the APPG on ME.

In the case of Associate Parliamentary groups, applications for membership may be accepted by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

The APPG on ME group’s current office holders and the twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi389.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME and The ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

AfME and the MEA alternate the task of minute taking and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

So none of the five national registered membership ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.

ME Research UK : a research organisation and a registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are sometimes listed as attendees in the minutes of meetings; their contributions to these meetings are minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

APPG on ME: Agenda for next meeting Wednesday 8 July 2009

The next meeting of the APPG on ME will be held on Wednesday 8 July.  Members of the public are able to attend these meetings. 

The website of the APPG on ME is here: http://www.appgme.org.uk/

Minutes and full, verbatim transcript of the 1 April meeting here:

https://meagenda.wordpress.com/2009/06/15/appg-on-me-minutes-and-transcript-meeting-1-april-2009/

 

1.30 – 3pm, Wednesday 8 July 2009

Committee Room 19*, House of Commons

See latest update for a further room change

*Please note this change of venue – previously Committee Room 20

The meeting will be the Annual General Meeting and the future work of the APPG will be discussed.

AGENDA

1. Welcome by the Chairman

2. Minutes of the last meeting – available at:

http://www.afme.org.uk/res/img/resources/FINAL%20APPROVED%20%20MINUTES%20APPG%20on%20ME%201%20April%2009.pdf

3. Matters arising

– Update on the APPG Inquiry into NHS Services

– Statement from WMMEG (West Midlands ME Groups) Consortium on ME/CFS – Education and Training in the NHS

4. AGM

i. Election of Chairman

ii. Election of Vice-Chairman

iii. Election of Secretary

iv. Election of Treasurer

5. Future of the APPG

i. Future work

ii. APPG legacy paper (in preparation for a General Election)

iii. APPG website

6. Speaker to be confirmed

7. Any Other Business

8. Date of Next Meeting

 

Heather Walker, Action for M.E., Secretariat, APPG on ME

Or contact: Des Turner MP, 179 Preston Road, Brighton BN1 6AG

Tel: 01273-330610. E-mail: turnerd@parliament.uk

*It has been agreed that amendments to minutes should be put in writing to the Secretariat one week before the meeting. Please e-mail heather.walker@afme.org.uk

Latest on APPG on ME inquiry into NHS services

Update: Jane Colby, The Young ME Sufferers Trust, advises that the Producer of the BBC “The Politics Show” has informed her that the broadcast has been rescheduled for May 10th.  Part of the APPG on ME meeting held on 1 April is expected to be featured in this broadcast.  I will post more details nearer the time.

Latest on APPG on ME inquiry into NHS services

It’s proving difficult obtaining information around the non appearance of the dedicated website for the APPG on ME inquiry into NHS services for people with ME and also on the availability of minutes for the meeting held on 1 April – a meeting largely given over to discussion of the inquiry.

This is the most recent information I have:

Inquiry website:

At the meeting on 1 April, Dr Des Turner, Chair of the APPG on ME, is reported as having said that the website for the Inquiry would be launched later that week.

The 3 April Press Release had stated:

“People with M.E., carers and professionals are invited to submit suggestions for specific questions which should be asked in these surveys. Our deadline for receiving people’s ideas is 5 May 2009”.

It was intended that the inquiry website would be one method via which comments around patient surveys and service provider questionnaires could be submitted to the inquiry panel.  According to the draft Timetable circulated at the meeting on 1 April, the deadline for “people with ME to submit questions to Dr Turner via website or in writing” was also given as 5 May – next Tuesday.

Four weeks down the line, schedules are already starting to slip and no website has been launched.  Some members of the ME community may have been waiting for the website to appear in order to submit their suggestions.

I contacted the Office of Dr Ian Gibson (Secretary to the APPG on ME and APPG on ME Inquiry Panel Member) on Tuesday morning with concerns about the non materialisation of the website but have received no response.

I have been told by Action for M.E. that the organisation does not have anything to do with the APPG Inquiry other than that it is related to ME and it was suggested I chase Dr Turner.

Dr Turner issued the following on Tuesday afternoon:

That the inquiry website is currently being built but that for the time being, the Terms of Reference have been placed temporarily on Dr Turner’s parliamentary website at: http://iwc2.labouronline.org/165220/me-nhs-enquiry

That once the “APPG ME” website has been built, the information on the parliamentary website will be placed on the new website along with the minutes of the previous meeting.

That currently, the deadline for written evidence is the 9th of June.

——————–

Note that the draft Timeline circulated at the APPG on ME on 1 April has not been published on Dr Turner’s website nor on Action for M.E. or the MEA’s websites and is not freely available online. 

Minutes of previous meeting:

At the meeting of the APPG on 1 April, a stenographer was present recording the proceedings. This is not the usual practice at APPG meetings.

Dr Turner is reported as having said that the minutes of APPG meetings were getting too long and that a transcript of this meeting would be available soon.

As already reported, here, Tony Britton had stood down from secretariat duties. I haven’t been able to establish whether, on this occasion, Heather Walker was present and also taking minutes in addition to the stenographer’s presence.

Enquiries have been made of Action for M.E. and of the Office of Dr Gibson (Secretary to the APPG on ME) as to the reason for the stenographer’s presence and to what purpose this transcript was to be put, and when and where it would be made available.

No response has been received from Dr Gibson.

In response to a request for a clarification, Action for M.E. tells me that their understanding is that the APPG was recorded and that the company who made the recording will be using it to provide a full transcript which will be made available via the Action for M.E. and ME Association websites.

Due to pressure of work, Action for M.E. says that it has not chased the company for the transcript.

According to Action for M.E., the intention is that transcripts will be made available for future APPGs – “presumably with a faster turnaround time – but will be funded by Action for M.E. and the ME Association and so will be subject to the usual funding pressures”.

——————-

Since this is a departure from the usual proceedings, the costs of which appear to be being met by the APPG secretariat, it would have been appropriate for Dr Turner to have briefly explained the reason(s) behind these changes.

What still isn’t clear, is whether in future the secretariat will still be minute taking during these meetings (or who will be undertaking this task) or whether the minutes will be prepared from these transcripts by Action for M.E.’s Policy Manager, once this new post is taken up.

One of the tasks written into the Job Spec is:

“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.”

If the minutes were going to be largely extracted from transcripts, unless someone is also minute taking during the course of the meeting, I can foresee problems around the identification of speakers, since those making contributions at meetings do not always announce their names before speaking. These are informal meetings, often up to two hours long, with contributions from the floor as well as from committee members, parliamentarians and invited speakers.

Also, it’s not clear whether the production of the minutes for the last meeting is dependent upon the receipt of an externally produced transcript or whether minutes were also being taken during that meeting by Heather Walker; that is, are we still waiting on Action for M.E. to write up the minutes and have them approved by the Chair, or are we waiting on the provision of a transcript before the minutes can be extracted from that?

This was an important meeting, devoted primarily to discussion around the APPG Inquiry. But four weeks down the line, we still have no Inquiry website, no minutes, no transcript and no official explanation for this change in procedure which is said to be being facilitated through patient organisation funding.

A statement of clarification from the ME Association would be welcomed.

Suzy Chapman

30 April 2009

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: http://www.meassociation.org.uk/content/view/846/161/ )

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:

http://www.afme.org.uk/aboutus.asp?table=contenttypethree_detail&pagetitle=Job%20opportunities&id=146

Policy Manager job description

http://www.afme.org.uk/res/img/resources/FINAL%20Policy%20Manager%20job%20description%20at%2023%204%2009.doc

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

Action for M.E. seeks Policy Manager/political lobbyist

Action for M.E. is seeking to recruit a Policy Manager/political lobbyist

Action for M.E. has created a new position for a full-time Policy Manager/political lobbyist and the following vacancy is currently being advertised on its website:

 —————————-

Part time and Full time Vacancies

Policy Manager
£28k-£30k
Full-time
2 years fixed term
Based in central Bristol offices (with travel to London and Edinburgh)

Experienced policy officer, policy manager or political researcher required by leading M.E. campaigning charity.

Policy Manager job description:

http://www.afme.org.uk/res/img/resources/FINAL%20Policy%20Manager%20job%20description%20at%2023%204%2009.doc

Policy Manager application form:

http://www.afme.org.uk/res/img/resources/Policy%20Manager%20application%20form.doc

Or open document here:  Policy Manager Job Spec

Closing date for applications: 22 May 2009
Interviews: 18 June 2009
Start date: August 2009

Policy Manager

Job description

Base: Bristol with regular travel to London, Edinburgh and elsewhere

Salary: £28,000-£30,000

Term: Full-time, fixed term for two years in the first instance, extension subject to performance and funding

Hours: 9am-5pm, Monday-Friday, although flexibility will be required

Reports to: Chief Executive Officer (CEO). The Policy Manager will be part of the Senior Management Team (SMT) which includes the Finance Manager, Communications Manager, Fundraising Manger and Head of Support Services.

Manages: Project Coordinator Scotland (who is home-based in Scotland)

Key ext. contacts: People with M.E. and their representative groups. MPs, MSPs, Lords and parliamentary staff and representatives of:

Government departments eg. Department of Health, Work and Pensions; key NHS contacts eg. Clinical Champions for M.E.;

public agencies eg. Medical Research Council, National Institute for Health and Clinical Excellence, Scottish Public Health Network; voluntary sector partners and coalitions eg. Association of Young People with M.E., Disability Alliance, National Voices etc

Role: 1. To create a new dedicated policy function within Action for M.E., which will involve developing Action for M.E.’s policy position and lobbying strategy and being responsible for political lobbying by the charity.

2. To monitor national and regional policy development and implementation and service delivery – particularly in the areas of research, health, welfare, social care, employment, education etc, as they relate to people with M.E. and their carers

3. To provide the Secretariat for the All Party Parliamentary Group at Westminster; to represent Action for M.E. at meetings of the Cross Party Group in Edinburgh; to represent Action for M.E. at meetings which relate to national and regional policies and practices.

4. To be Secretary to the trustees’ new Policy Group, which will develop and update the charity’s policies on M.E.-related issues, monitor and evaluate their effectiveness and conduct regular assessments of the charity’s compliance with key policies.

5. To be an Action for M.E. media spokesperson on policy issues.

6. To develop contacts, links and networks to facilitate partnership working and facilitate change.

7. To be responsible for ensuring that Action for M.E. responds to relevant public consultations.

Tasks: Create a new policy function

1. Undertake desk / online research to monitor information sources produced by government departments, think tanks, non-governmental organisations and other bodies, in order to keep Action for M.E. informed of any developments related to their field of activity.

2. Register with relevant public agencies and service providers to receive updates and keep Action for M.E. informed about new government initiatives, legislation, guideline/procedural/ legislative review and public consultations.

3. Identify and forecast policy developments.

4. Draft briefing papers on policy issues for internal and external use.

5. Report to the CEO/SMT on all relevant developments, flagging up issues which are of both long-term strategic importance to the charity as a whole and immediately relevant to us in terms of policy development, campaigns, information and support services, fundraising, communications including press, public consultations with stakeholders, etc

6. Draft and implement policy and campaign strategies in association with the CEO/SMT. Campaign strategies will include lobbying, for which the Policy Manager is responsible in association with the CEO, and media, for which the Communications team is responsible.

National and regional parliamentary duties

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.

8. Represent Action for M.E. at meetings of the Cross Party Group (CPG) in Edinburgh. The Policy Manager will line manage Action for M.E.’s Project Co-ordinator for Scotland, who provides secretarial support to the CPG.

Policy and lobbying activities

9. Represent Action for M.E. at meetings in London, Edinburgh or elsewhere organised by public or voluntary agencies which relate to national and regional policies and practices which affect people with M.E. and their carers.

10. Be responsible for responding to government and other consultation documents, following consultation with colleagues, members and others as appropriate

11. Foster good relations with government and with statutory, voluntary and private bodies by maintaining regular contact, in person and in writing, with politicians, civil servants, and/or staff in local authorities and regulatory bodies. Keep MPs, MSPs and other policy decision makers informed about developments which relate to M.E. and to Action for M.E.’s policy-related activity and campaigns.

12. Work to place questions to Ministers and to encourage MPs, MSPs and members of the Lords to debate issues which relate to M.E.

Communicating policy

13. Work with the Communications team, to ensure that policy information on the charity’s website is up-to-date and to produce fact sheets, articles and e-communications for external use.

14. Liaise with the Communications team and IT manager when Action for M.E. consults with members and other stakeholders on policy-related issues.

15. Operate as an Action for M.E. media spokesperson on policy issues

16. Give presentations on policy/practice and/or Action for M.E. activities or strategy as they relate to policy/practice as required.

17. Liaise with the Fundraising team on submissions to statutory bodies and trusts which relate to policy issues.

Staff and work management

18. Line manage the Project Co-ordinator for Scotland, who is part-time and home based in Scotland, agreeing action dependent upon projects planned or underway.

Line management responsibility may increase if funding is obtained for additional posts

19. Recruit and line manage an intern or volunteers to support the policy function.

Person specification

The role will require the post-holder to have or to develop comprehensive knowledge and understanding of all the policy issues which affect the lives of people with M.E. and their carers and to be able to communicate Action for M.E.’s stance on these issues clearly and effectively to a variety of audiences.

Essential

1. At least three years’ previous experience as a policy officer or policy manager or as a political researcher.

2. Ability to assimilate and understand complex information and issues, including legislation and other policy documents, research findings and guidelines for healthcare professionals and other public service providers. This would include the ability to understand and interpret basic medical research.

3. Ability to communicate information and issues well, to people at all levels, face to face, by telephone and in writing.

4. Excellent diplomatic, networking and persuasion skills, including consensus building skills.

5. Excellent presentation skills: ability to think clearly, deliver a presentation or key point credibly, fluently and effectively whether as a participant in a high-level meeting, conference speaker or speaker at a local support group gathering.

6. Sensitivity in working with people of all ages who are very ill and often highly informed about and frustrated by their illness and others’ perceptions and misconceptions of it. Ability to respect absolute confidentiality when required.

7. Broad understanding of M.E. and genuine desire to improve the lives of people with M.E.

8. Willingness and ability to travel to London, Edinburgh and elsewhere as often as required. This could occasionally imply an overnight stay away from home.

9. Willingness and ability to undertake online research and to communicate extensively by e-mail and telephone will be required.

10. Experience of line-managing one or more colleagues.

Desirable

1. A degree or equivalent, relevant experience eg. in a health, welfare or social policy setting. A relevant degree / demonstrable interest in politics would be an advantage.

2. Experience of working in the voluntary sector, with the public sector.

3. Experience of working with people at all levels, including MPs, MSPs or other elected members, government Ministers, their staff and officials.

4. Experience of working with different agencies across the country.

5. Experience as a spokesperson would be an advantage.

Terms & conditions

Full terms and conditions are available in the Staff handbook, which is available from sara.brooks@afme.org.uk on request. The following summary has been compiled in anticipation of frequently asked questions. Applicants who have additional questions should feel free to ask them at interview.

Salary

The salary for this post is £28,000-£30,000. Salaries are paid on the last day of each month by direct transfer into bank accounts.

Hours of work

Regular hours of work* will be agreed with the CEO but flexibility will be essential. (*The standard working day for full-time employees is 7 hours excluding lunch breaks and “normal hours” are 9am to 5pm). Overtime is not paid. Reasonable time off in lieu will be awarded if staff are required to work exceptional hours.

Probationary period

This is a fixed term 2 year post, subject to satisfactory performance during the initial three-month probationary period and subsequently, through six-monthly appraisals by the CEO. The charity aims to develop a permanent policy function, subject to the availability of funding.

Notice period

One month’s notice will be given by the employee or employer if the contract is to be terminated.

Public holidays

Staff are entitled to paid leave during bank holidays and public holidays.

Annual leave

Full-time staff are entitled to 26 days’ leave per calendar year. All time off must be agreed in advance with the line manger.

Pensions

Action for M.E. has instituted a Group Personal Pension Scheme, administered by Foster Denovo, on behalf of Friends Provident. New employees may join this scheme after three months’ service. It is a joint contributory scheme, with a minimum three percent employee contribution. Action for M.E. will match contributions up to a maximum of three percent of the employee’s basic salary.

How to apply

It is important that your application describes how your skills and experience match the role and requirements of this post. Please send your application form, completed Equal Opportunities Form and a covering letter explaining why you are best suited to the post, to: Sara Brooks, Action for  M.E., 38 Victoria St., Bristol BS1 6BY. Tel: 0117 927 9551. E-mail: sara.brooks@afme.org.uk

Closing date for applications: 22 May 2009

Interviews: 18 June 2009 (tbc)

Start date: 3 August 2009 (negotiable)