Thanks
@Suffolkres
Sounds as if Nice had not fully thought through the selection of stakeholders process. I think I remember at least a couple of other local groups being selected but am not sure if they are still there.
I think the issue of getting CBT and GET removed is such a crucial issue for us that I feel the need to check and recheck that all is going as it should with Nice and the guideline development.
If we do not get CBT and GET removed this time round and they remain the core NHS treatments, whatever biomedical treatments are developed will be unavailable to us, and that is unthinkable.
Valerie’s blog is a long one but sectioned clearly and contains much of interest
QUOTING from Sept 28th 2018 blog
“February 2018 (in response to some questions)
The current incarnation of NICE was created by statute, the
Health and Social Care Act 2012 (HSCA). It is governed by its own process as set out in the manual. There is very little flexibility about what it can do and how it can do it. NICE is not governed by any one specific area of law but by general public and administrative law practice and procedure, as are all public bodies. Likewise, the status of stakeholder has no legal basis as such. Any attempt to try a novel legal approach [
on the process] would be risky in terms of costs and outcome.
Professor Mark Baker [
the then outgoing Director of the Centre for Guidelines at NICE] will not be able to make any undertakings or commitments. That would be beyond his discretion and outside the scope of the NICE process. Even if he could, he could not bind any successor. It’s necessary to understand that, even if anyone at NICE did want to “help” the ME community more, they do not (officially) have the power to do so ie. even if they did, they would not be able to say so publicly.
I am the first to argue that ME patients merit special treatment, given the way we have been treated over many decades. However, the NICE process isn’t going to fix that.
Without the benefit of a comprehensive, proactive/reactive media strategy aimed at radically changing the perception of both patients and illness (which would take a while) this will be a slow process [emphasis added].
Whether or not it’s worth engaging in the NICE process is an impossible question. I have argued that we needed an expedited review to prevent further harm [
by continuing the current treatment recommendations] but the amount it can achieve is limited, as is the role of stakeholders. Trying to get NICE to accommodate the demands of the community won’t work. However, even if a mass walkout of patient groups could be organised, that just leaves the review in the hands of unhelpful others. On balance, I think it’s better to be part of it but to keep expectations realistic.
That said, there is always room for appropriate direct action by patient groups, so that voices are heard and concerns raised. Unfortunately, our reputation precedes us (crazy/hostile/angry/dangerous/unreasonable etc. etc.) and that isn’t a good starting point.
As I said in [
a recent] blog post – “The exhortation to “speak truth to power” has become a commonly used slogan. The actual use of this concept to achieve real results is a complicated and nuanced process, especially if those doing the speaking are themselves without power.” Until we can change that [see reference to “media strategy” above], progress will continue to be painfully slow.”
“March 2018
The NICE manual on developing guidelines is here
https://www.nice.org.uk/process/pmg20/chapter/introduction-and-overview The relevant part of the HSCA on NICE (section 232 onwards) is here
https://www.legislation.gov.uk/ukpga/2012/7/part/8 It creates the power for NICE to carry out its statutory functions and sets out the usual duties/standards etc.
NICE has very broad statutory powers and is a self-regulating public body. This means that it would have to act very “irrationally” (in the legal sense) for any of its actions to be susceptible to challenge. This is quite normal for bodies of this nature and is to allow them a broad discretion in which to operate.
In a nutshell, NICE writes its own rules and marks its own homework. That said, I wouldn’t necessarily dismiss everyone connected with it out of hand. Obviously, I remain sceptical – but not everyone is a bad guy. However, as I said before, those who work for NICE have very little discretion in what they can do as they are bound by the process.
The main purpose of section 232 was to bring social care under NICE along with health. Presumably this was for political expediency – more commonly known as other ways in which we can cut costs and screw patients/those needing social care.
[apologies for the language but sometimes it’s necessary to call a spade a spade…]”
We have made some progress in that we have hopes of a full Commons debate, there has been some positive publicity in the media, there is the ongoing open letter to the Lancet, but we absolutely need Nice to drop CBT and GET. Without that ..............
EDIT: added end of sentence beginning “I think the issue...”
)
