Format of NICE stakeholder meeting?

[Keela Too]

I was wondering if anyone knows how a NICE stakeholder meeting works?

I am guessing that our “CFS/ME” one will be well attended, so I’m wondering what opportunity there might be for those present to express concerns? I have been told that patient concerns are generally taken very seriously at meetings such as this, and I’m hoping that will indeed be true for our meeting too.

Anyone here know anything about how it all works?

 

[Andy]

Sorry, I'm no wiser than you are. @Jonathan Edwards , can you provide any insight?

 

[ukxmrv]

I was going to suggest that as many patient reps as possible meet up before the meeting or set up a closed email group to discuss the workshop.

The former may of course not be possible as just getting to the workshop is going to be hard for many.

This is not a time to go into negotiations unprepared or treating this as an exploratory meeting. This may be the only real opportunity to make a difference.

 

[Keela Too]

Is it true that we will get sent some material to read first? If so when? I'd like to have reasonable time to digest the material.
Anyone know? @Andy @Jonathan Edwards

 

[Jonathan Edwards]

Sorry, I'm no wiser than you are. @Jonathan Edwards , can you provide any insight?

Nope, I have heard nothing from them yet.

 

[Andy]

Is it true that we will get sent some material to read first? If so when? I'd like to have reasonable time to digest the material.
Anyone know? @Andy @Jonathan Edwards

All I've received so far is an email titled "Confirmation of attendance at NICE scoping workshop – NICE guideline on Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management – 16/01/2018" essentially saying when and where the meeting is and discussing what expenses they will and wont reimburse.

 

[Keela Too]

Thanks. That's the same as me so far.

 

[Graham]

When I last looked, it seemed that there were 77 or so stakeholders on the list, and only a minority were patient groups/representatives. With such a large group, and with so many of them representing current treatments, I wonder how easy it will be to have a discussion.

 

[Jonathan Edwards]

When I last looked, it seemed that there were 77 or so stakeholders on the list, and only a minority were patient groups/representatives. With such a large group, and with so many of them representing current treatments, I wonder how easy it will be to have a discussion.

All I think may be achieved is that the range of opinions may be laid out.

 

[Valentijn]

When I last looked, it seemed that there were 77 or so stakeholders on the list, and only a minority were patient groups/representatives. With such a large group, and with so many of them representing current treatments, I wonder how easy it will be to have a discussion.

I doubt most of them would attend ... I think there are some organizations which sign up as a stakeholder for everything, just to stay updated on everything happening in NICE. But a lot of them have literally no connection to ME/CFS.

 

[Seven]

Can international ME associations and Scientist participate or is this only UK people allowed?

 

[Jonathan Edwards]

Can international ME associations and Scientist participate or is this only UK people allowed?

I think this is for UK stakeholders. I suspect about 50 will turn up, which may be quite good. I am just wondering if I may need to go incognito. I think I may take a big felt pen so that I can put S4ME in big letters on my badge.

 

[Andy]

I think this is for UK stakeholders. I suspect about 50 will turn up, which may be quite good. I am just wondering if I may need to go incognito. I think I may take a big felt pen so that I can put S4ME in big letters on my badge.

S4ME can probably afford to buy you a set of these if need be.

 

[Andy]

Can international ME associations and Scientist participate or is this only UK people allowed?

Here are the official guidelines on who is eligible to be a stakeholder - https://www.nice.org.uk/get-involved/stakeholder-registration

It does favour people/organisations that are UK based but there are a few categories that might allow overseas participation.

 

[Jonathan Edwards]

S4ME can probably afford to buy you a set of these if need be.

My eyebrows normally look a bit like that.And my glasses are not much different. I gave up the moustache thirty years ago so maybe that would do it. Maybe one of these would make me look suitably inconspicuous.

 

[Indigophoton]

Would that mean we've got the biggest button?

 

[Keela Too]

I wonder how they will structure the meeting. Will I get a minute or two to say anything or is it a free for all?

 

[Jonathan Edwards]

It is a bit strange having no indication of what is going to happen just ten days before a meeting. I have not personally had any communication from them at all.

 

[Keela Too]

I have now asked (yesterday). No reply yet.

 

[Keela Too]

I have now heard back and this is to be the format for the day:

“The format of the meeting will follow some short presentations from NICE staff at the start of the workshop, followed by the bulk of the meeting being a time for everyone to openly discuss what is of most importance with this guideline. We will be splitting all stakeholders into smaller tables with two members of NICE staff where we can then talk about specific points that are of importance for this ME/CFS topic. This will provide ample time for you to raise any comments you may have and we find it allows an excellent way for discussion to take place around each topic of interest. The NICE members of staff on each table will be taking notes of all discussions during this time.


At the end of the meeting, each table will then feedback what they have discussed to everyone else. We will also be in contact again later this week to confirm specifics around the location of the meeting venue.”