NICE Guideline Committee Register of Interests, 9 April 2019

[Hoopoe]

NICE needs to do something about FII. It seems to be totally out of control. Serious error in the system.

The unusual patterns of healthcare utilization, school attendance, investigation and so on are not unusual, they are often the norm in ME/CFS. Declining GET for one's child is not abuse.

 

[Amw66]

This looks like a dreadful mess but I am not in a position to get involved.

Sadly

 

[Trish]

What do others think? Should S4ME try to formulate a letter or not?

Speaking as an individual, not with my committee hat on, I am very concerned about this and think it is worth a polite letter to the committee chair and whoever else deals with this.

 

[Binkie4]

In January, Helen Finn, Communications Manager for NICE replied to a letter we had sent re the composition of the Committee in the following terms.

“As a result of concerns raised with the appointments made so far we have reviewed the appointments and we consider that they are appropriate and that any interests that the committee members have declared can be managed using our policy on declaring and managing interests for NICE advisory committees.”

Nice’s COI policy below. ( not yet read but presumably it informs the decisions they have made).

https://www.nice.org.uk/Media/Defau...rocedures/declaration-of-interests-policy.pdf

S4ME thread https://www.s4me.info/threads/nice-...s-now-been-published.6197/page-37#post-137054

 

[adambeyoncelowe]

Speaking as an individual, not with my committee hat on, I am very concerned about this and think it is worth a polite letter to the committee chair and whoever else deals with this.

Don't worry, I've already sent a link to the chair.

 

[Trish]

Don't worry, I've already sent a link to the chair.

Do you mean a link to this thread?

 

[adambeyoncelowe]

Do you mean a link to this thread?

Yes.

 

[Suffolkres]

In January, Helen Finn, Communications Manager for NICE replied to a letter we had sent re the composition of the Committee in the following terms.

“As a result of concerns raised with the appointments made so far we have reviewed the appointments and we consider that they are appropriate and that any interests that the committee members have declared can be managed using our policy on declaring and managing interests for NICE advisory committees.”

Nice’s COI policy below. ( not yet read but presumably it informs the decisions they have made).

https://www.nice.org.uk/Media/Defau...rocedures/declaration-of-interests-policy.pdf

S4ME thread https://www.s4me.info/threads/nice-...s-now-been-published.6197/page-37#post-137054

LOcalME have drafted a stage 3 complaint to the Ombudsman - not yet sent ( my fault...)

 

[Binkie4]

LOcalME have drafted a stage 3 complaint to the Ombudsman - not yet sent ( my fault...)

@Suffolkres - thanks. What is a stage 3 complaint?

 

[Suffolkres]

Stage 1 and Stage 2 with NICE, then the Ombudsman next if we were not happy and not accepting NICE responses.