Evasive response NICE to my questions

Yesterday, October 5th, I received an answer from a senior communications manager to the questions I sent to NICE and specifically the chairman of the board on September 14th. Well actually, it’s a rather evasive response but on some points it offers a remarkable insight if I understand it correctly. My original questions are in Bold, the answers from NICE in Italic and my reactions are underneath those answers.

Thank you for your following up email to myself and our chairman Sharmila Nebhrajani. Ms Nebhrajani has asked me to respond on her behalf and I address each question in turn:

Can you tell me by whom and how Professor Black was appointed as chair for the round table session? How was her independent position evaluated and on which grounds?

NICE’s chief executive, Professor Gillian Leng approached Dame Carol and she kindly agreed to chair the round table. We asked Dame Carol as she is an experienced chairperson, is independent of NICE and our guideline development processes.

• This answer has been given before and it means that Dame Carol is independent of NICE but it doesn’t mention that she is linked to other important parties with vested interests, as others have written before, and they are certainly not the patients. So the meaning of the word independent is seriously subject to erosion.

The round table is for discussion of the issues raised that led to the pause in publication, it is not a decision-making forum. Any subsequent decisions will be made by NICE’s guidance executive.

• So the round table is not decision-making, but anyone can imagine that there will be lots of influence on the already approved text of the final guideline. According to this answer the NICE guidance executive (who exactly?) will be deciding. How does this compare to the guideline processes and regulations that NICE have described themselves? What are the rules for this kind of decision making? Will the guideline committee be totally ignored now?

Why is the round table session postponed?  

In order for the meeting to be as effective as possible it is important to fully understand the issues and concerns that all groups attending the meeting wish to raise. We also recognise the difficulty that holding the meeting at short notice created for some attendees who would have been unable to make the original date.

• This is an evasive answer. It doesn’t give any clarity.

How can you explain a round table session at all after a guideline process that took almost 4 years and that had been closed?

The roundtable will be an opportunity for all parties to discuss key issues raised prior to publication. The decision on next steps will be taken by NICE, taking into account comments made at the roundtable. The meeting will take place on 18 October 2021 and we will release the agenda ahead of the meeting and minutes will be published afterwards.

• Key issues have been discussed prior to publication. The almost 4 years lasting guideline process was meant to discuss key issues. In fact the guideline had already been approved and only minor textual changes could have been made in this phase. The answer given is not an answer to my question.

Can you explain why the publication has been postponed just hours before publishing?

Changing clinical practice and clinical attitudes is one of the most challenging parts of our role. We want to ensure that the guideline makes a difference for patients and to make a real difference, guidelines need to be supported by all relevant stakeholders. In this case, we took the difficult decision to pause publication in the light of feedback from some key groups. Taking some extra time now to bring everyone together at the roundtable event is an important step.

• This nonsensical and extremely evasive answer has been given on and on. It is in no way an answer to the question. How is it possible that these “key groups” can uphold a guideline publication just hours before publication when all steps have already been taken? What will  happen if the patients “key group” does not support the irreglementary altered guideline? 

How does that fit into the NICE guideline processes? 

Decisions to publish final guidance are taken by NICE’s guidance executive. In this case, because of issues raised during the pre-publication period with the final guideline, guidance executive took the decision to pause publication.

• This reaction describes a fact, but it is not an answer to my question. How does this fit into the guideline processes? Does it fit into the guideline processes at all? Please answer the question.

At what exact moment did professor Gillian Leng send her letter of resignation?

Professor Leng discussed her plan to retire from NICE with the chairman and other colleagues and stakeholders. NICE confirmed Professor Leng’s intention to retire in a statement on 09 September 2021.

• This again is an evasive answer, but perhaps it gives more information than intended. Apparently there was no letter of resignation and may we conclude that professor Leng had no intention to leave before postponing the publication and all that happened then?