NICE Guideline stakeholders workshop Jan 2018

[ukxmrv]

I've heard that NICE have sent invites out to Stakeholder groups for a "Guideline stakeholder engagement workshop" to be held in January 2018.

This is for the CFS/ME Diagnosis and Management Guideline (October 2020)

Any members of registered Stakeholder groups here and anyone attending?

 

[Esther12]

Is it too late for S4ME to register as a stakeholder?

 

[Andy]

Is it too late for S4ME to register as a stakeholder?

From the Forward ME minutes that just came out

In answer to a question Prof Baker confirmed that people can register as stakeholders at any time.

 

[Joel]

From the Forward ME minutes that just came out

Really? So individuals such as regular patients?

 

[Andy]

Really? So individuals such as regular patients?

I don't think it's individuals but I might be wrong.

 

[Keela Too]

I don't think it's individuals but I might be wrong.

Individuals can represent groups... each group can have two representatives I think.

 

[Adrian]

Is it too late for S4ME to register as a stakeholder?

I think we may register as a charity in which case we could probably register as a stakeholder. Do organizations need an 'official status'

Individuals can represent groups... each group can have two representatives I think.

Do you know if there is any definition of a group?

 

[Keela Too]

I'm not entirely sure on what defines a group @Adrian
Hope 4 ME & Fibro NI are a charity, and we became stake holders in 2016 I think. We submitted a response to NICE in July.

 

[ukxmrv]

I think we may register as a charity in which case we could probably register as a stakeholder. Do organizations need an 'official status'


Do you know if there is any definition of a group?

Any group has to fit their definition of a stakeholder to register
"

• National organisations for people who use health and social care services, their families and carers, and the public
• Healthwatch organisations
• National organisations that represent health and social care practitioners and other relevant professionals whose practice may be affected by the guideline
• Companies that manufacture medicines, devices, equipment or adaptations, and commercial industries relevant to public health, e xcluding the tobacco industry
• Tobacco industry organisations who register to participate are automatically registered as respondents
• Public sector providers and commissioners of care or services
• Private, voluntary sector and other independent providers of care or services
• Government departments and national statutory agencies
• Organisations that fund or carry out research
• Overseas agencies with a remit covering England
• Local or regional groups representing people who work in, or use health and social care services can register as stakeholders only when there is no national organisation that represents the group's specific interests.

https://www.nice.org.uk/get-involved/stakeholder-registration

 

[arewenearlythereyet]

I think we qualify as stakeholders

 

[Valentijn]

Private, voluntary sector and other independent providers of care or services

I think we'd qualify as providing a service, in the form of a social platform specifically for ME patients. We probably don't even need charity status, though it might help.

 

[Jonathan Edwards]

I would hope S4ME can register for this. If it is useful for me to attend as a representative (being reasonably mobile) I may be able to do that in January.

 

[Andy]

I would hope S4ME can register for this. If it is useful for me to attend as a representative (being reasonably mobile) I may be able to do that in January.

Thanks for the offer Jonathan, I'll bump the issue of registering up to the full committee to see where we stand with it.

 

[Andy]

Thanks for the offer Jonathan, I'll bump the issue of registering up to the full committee to see where we stand with it.

We have applied to be registered as a stakeholder organisation, they will confirm (or deny) our registration in the next 28 days.

 

[Sasha]

We have applied to be registered as a stakeholder organisation, they will confirm (or deny) our registration in the next 28 days.

Thanks to you all for your work on this, Andy.

 

[Andy]

Thanks to you all for your work on this, Andy.

Thanks Sasha. Everything is a team effort around here, I just get to post about it and get all the likes

 

[ukxmrv]

We have applied to be registered as a stakeholder organisation, they will confirm (or deny) our registration in the next 28 days.

The cut off date for this workshop is the 15th of December. You have probably already done this but maybe let them know you intend to send a representative or two if not already done so.

Thanks for applying. So glad S4ME will be there.

 

[Keela Too]

I asked about how they would limit numbers (as that was suggested somewhere) and they said they might have to limit the number from each organisation to one representative... two can apply. However I was told they were hoping to accommodate all who applied.

 

[Andy]

I've just received confirmation that S4ME are now registered as stakeholders. No notification of this workshop yet though.

 

[Keela Too]

I've just received confirmation that S4ME are now registered as stakeholders. No notification of this workshop yet though.

Today I think is the deadline for the submission of applications for the meeting. I suggest you ring them and ask for the email about the meeting to be forwarded to you. The application form is not too arduous.