NICE looking for lay members to join the ME/ CFS guideline committee, 2018

[alktipping]

the meeting venue defines who is in charge who has authority it is an ancient way of cowing those with less or no power. authority always does things that best suits themselves .

 

[MEMarge]

Yes, that makes sense , but there must be other ways of achieving this.
If you had to have a single centre why London- why not somewhere geographically more central?

?The NICE people are based in London at the RCP.

 

[MEMarge]

Below* is extract from an email reply that I got from the PIP (Public Involvement Team) at NICE, prior to the Scoping meeting.

I also asked Kate Kelly about this at the meeting. She was at our table at the initial engagement meeting, and said she was the new Guideline lead. Someone at her table this time indicated that they would be interested in applying but would be unlikely to manage whole days, due to ME. Kate said that they would consider job-share/reserves etc.



*"Participation in guideline committee meetings

Meetings will be held in central London and are likely to last for about 6 hours including lunch and other breaks. Timings are yet to be confirmed.


There will be space for people to stretch out, and to lie down or rest. Other reasonable adjustments will be made according to the needs of the people appointed to the committee.


Thank you for your other proposals for including people with ME on the guideline committee, such asremote participation in meetings, reserve committee members and job-sharing arrangements. We are exploring different options to ensure effective participation and will confirm the arrangements in due course.


The potential for additional forms of participation, such as a reference panel or focus group

No decision has yet been made on what other forms of involvement may be used, in addition to consultation with stakeholder organisations. This will depend on the scope of the work that’s agreed following stakeholder consultation, and the needs of the committee.



We look forward to seeing you at the scoping meeting.

Best wishes

Jane


Jane Cowl

Senior Public Involvement Adviser

Public Involvement Programme, NICE

Tel: 44 (0)20 7045 2054


My working days are Monday-Thursday.

 

[ladycatlover]

Had long chat with husband way back when this first came up, and was going to apply. But since then Life Happened. This week was stranded in Bwlchtocyn when needed to be home to visit Dentist for ongoing treatment. Not well enough to travel. Made me re-think. Suspect this kind of thing happens a lot of the time to fellow patients. Not just the not able to travel thing, more the being over optimistic of capability, perhaps at a time when marginally better to consider travelling to London.

I do worry about what patient reps will be chosen though - will they be chosen from ones put forward by some of the iffy charities? At least I was just doing it off my own bat as a patient following research for over 20 years. Some of the lay people on the last round of NICE were not people I'd want doing it again.

 

[NelliePledge]

six hours of a meeting on top of a trip to London is not inclusive even if you can lie down. I have been working 15 hours a week up until last Summer but I havent travelled for work for 3 years. I did everything on teleconferences including meetings with 10/15 people dialling in. We had some team meetings where people were dialling in from their desks across the UK. Jen Brea showed remote meetings on Unrest where people were dialling in from different continents. you have to think outside the box

 

[MEMarge]

I am currently very lucky to be on holiday. Therefore I don't have access to all my notes etc.

I just want to make two points:

• My understanding is that if a person wants to be involved in patient/carer panels etc that they need to apply now, in the same timescales as those applying to be lay members
• I think that more people need to contact NICE and continue to ask, until they get answers, re alternative ways of contributing the patient/carer view. Whether this is as a job share as lay member/part of a panel.... So far they are showing willing to consider alternatives without clarifying the nature of such alternatives.

I am not able to do much on this till 2nd week of July.
Kate Kelly said that in a previous Guideline on end-of-life care, alternative ways of contributing were used. Maybe she is the person to approach for more info, or maybe the chair, who seemed very keen to hear patient/carer input.