Publication Date has been Delayed & NICE have been in contact!

Good afternoon all,

Thank you all for your support and contuined hard work. We are close to 35 thousand signatures! Please continue to sign and share. 

The Publication Date has been delayed. We should have received the results yesterday. NICE have stated that there is a delay due to Covid....

I appreciate that NICE has responded to my email, however they are not answering our questions of concerns. Mostly, telling us what we already know. I keep informing them of how many medical/health proffesional will not go against the NICE guidelines because of their proffesional insurance/Associations etc. Which, would put us in a very vulnerable position if the proposed changes happened. 

I understand that NICE have to follow certain procedures and have to make cut backs because of funding issues. However, I explained in the previous email how distressed we all are about the proposed changes and that leaving us on tender hooks like this is very cruel. In my opinion I don't feel NICE are taking much responsibility for the harm they are causing us. 

I am now planning on my next response. 

If you would like to be involved in the next email to NICE, please contact me via my Instagram page clairebearmelmel.

Please Find copy of email below. 

Best wishes,

Claire xx

Dear Claire,

Thank you for your follow up email and further comments. As Helen says in her email below, we do appreciate that this is a very important issue for you.

NICE’s role is to develop guidance on best practice for most people with the health condition in question. Our guidance can’t cover every clinical eventuality that may exist at an individual level, due to co-existing conditions or other personal circumstances. This is why we are clear that NHS professionals and practitioners will be expected to take the guideline fully into account while using their professional judgement. However, they should also consider the individual needs, preferences and values of their patients or the people using their service. It will not be mandatory for the NHS to apply the recommendations in our final guideline, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian (where appropriate).

Our guidelines are based on the best available evidence. We use a wide range of different types of evidence and other information – from scientific research using a variety of methods, to testimony from practitioners and people using services. They are developed by independent and unbiased committees of experts and all our committees include at least 2 lay members. Once published, all our guidance is regularly checked, and updated in the light of new evidence or intelligence if necessary.

The draft guidance was subject to public consultation (as is our usual process) and this was the avenue for receiving feedback on the draft guidelines and the committee will take account of all stakeholder comments received and we’ll publish the comments and our responses when the guideline is finally published at the end of the month. Individuals were also able to comment on the consultation and their comments would have be seen by the committee, however we do not have the resources to respond to individuals and these comments will not be published on the website.

You may find it useful to refer to Developing NICE guidelines: the manual (PMG20)<https://emea01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.nice.org.uk%2Fprocess%2Fpmg20%2Fchapter%2Fintroduction&amp;data=04%7C01%7C%7Cf33ae458000a49f26aad08d8bb7af6b9%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C637465484088560288%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C1000&amp;sdata=Kt2twXQwU7HRkTT0mPeHgN5WCt3ozuQhpJPaOn4Lx3M%3D&amp;reserved=0> as this manual explains the processes and methods NICE uses for developing, maintaining and updating NICE guidelines. After the publication of a final guideline, we do welcome submission of any new good quality evidence that may have an impact on our recommendations. While we can’t say that a piece of evidence will result in a change to guidance, we will consider what impact it may or may not have on the recommendations as they are published.

I would also reiterate that the draft guideline makes a number of research recommendations to encourage research where there are gaps in the evidence.
There will be a delay to publication of the final guideline. This is because NICE is carefully assessing its planned publications in the context of the ongoing pandemic. Accordingly, we have decided to delay the publication of this guideline. We will proceed to publication as soon as it is appropriate. Additionally, we are working with NHS England to support the implementation of the guideline when it is published.
I would encourage anyone who has concerns about their physical or mental health to speak to their GP, health professional or a relevant patient support group. Concerns about care can be raised locally or more formally following NHS advice on how to complain<https://emea01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.nhs.uk%2Fusing-the-nhs%2Fabout-the-nhs%2Fhow-to-complain-to-the-nhs%2F&amp;data=04%7C01%7C%7Cf33ae458000a49f26aad08d8bb7af6b9%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C637465484088560288%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C1000&amp;sdata=ffEqwSLpm%2BSjyNkxzcDztK6hXD9pe4sFnDRWcoZiR0Y%3D&amp;reserved=0> NICE doesn’t have a role in complaints or service delivery.

Kind regards
Katy

Katy
Communications Executive
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
Tel: 0300 323 0141 (Due to current working arrangements this is an answer phone service only, please leave a message and we will call you back.)