Medical Officer for England respond the MEA's petition

[slysaint]

https://www.nice.org.uk/Media/Default/About/Who-we-are/NICE-framework-agreement.pdf

this should be it not very clear as NICE are jointly accountable with the department to Parliament

From 2014

"The Secretary of State is accountable to Parliament for the health system ("its steward") including NICE.
The Department of Health supports him or her in this role".

Clear as mud.

 

[Snowdrop]

I think "Dame" is a measure of social class, not time, so your question makes no sense

It could be that many people think this sort of Lord and Lady social class is quite antiquated and way past it's best before date belonging as it does to the feudal system.

Cleaning up problems in the UK could be done by proactive hiring in highest management people who did not come up through public school and finish at Oxbridge.
I say this as someone who has a child with a postgrad degree from Cambridge.

 

[Skycloud]

https://www.nice.org.uk/Media/Default/About/Who-we-are/NICE-framework-agreement.pdf

this should be it not very clear as NICE are jointly accountable with the department to Parliament

On page 8

'Accountability'
Section 4

So the short answer, section 4.1, is the Secretary of State for Health -

"accountable for the health system (it's steward), including NICE. The Department of Health supports him or her in this role."
...
So... everyone's favourite.... Jeremy Hunt. Yay.

@charles shepherd - does page 8 of the link
@NelliePledge posted help?


edit to add sorry @slysaint, I see you've already posted the same.

 

[Invisible Woman]

seem to remember reading that NICE now comes under NHS England.

My memory of this (probably not accurate):
Dr(?) Mark Baker in role as Clinical Director of NICE said to Forward ME Group something to the tune of him agreeing that the NICE Guidelines regarding ME were not fit for purpose but that he couldn't do anything about it as that would now be under the remit of NHS England.

Perhaps @charles shepherd could set us straight on this?

 

[NelliePledge]

On page 8

'Accountability'
Section 4

So the short answer, section 4.1, is the Secretary of State for Health -

"accountable for the health system (it's steward), including NICE. The Department of Health supports him or her in this role."
...
So... everyone's favourite.... Jeremy Hunt. Yay.

@charles shepherd - does page 8 of the link
@NelliePledge posted help?


edit to add sorry @slysaint, I see you've already posted the same.

6.4 also relevant as NICE head is also accountable direct to parliament for its actions and use of funds although coming under the departments oversight ie as part of whole DoH the Permanent Secretary as top civil servant and Secretary of State as top Minister. NICE will do its own annual reports and accounts it can be audited by the National Audit Office. Parliamentary Select Committees like Public Accounts Committee and Health Select Committee no doubt able to call Head of NICE to appear before them.

 

[charles shepherd]

My memory of this (probably not accurate):
Dr(?) Mark Baker in role as Clinical Director of NICE said to Forward ME Group something to the tune of him agreeing that the NICE Guidelines regarding ME were not fit for purpose but that he couldn't do anything about it as that would now be under the remit of NHS England.

Perhaps @charles shepherd could set us straight on this?

We have met Professor Mark Baker, and been in regular correspondence with him, and in early discussions with him were left with the clear impression that he agreed that the NICE guideline on ME/CFS needed revising.

See these minutes:

http://www.meassociation.org.uk/201...statement-by-the-me-association-10-july-2014/

But he then 'passed the buck' to NHS England - who basically tell NICE when they believe it is time to review or update a guideline

We then met with Dr McShane from NHS England, who didn't give the impression that he regarded a review of the NICE guideline as a high priority item for NHS England

I suppose, at the end of the day, Jeremy Hunt, must be the real big cheese here - but he is just as clever as 'passing the buck' as the rest of them

It's a never ending circle…….

CS

 

[lafarfelue]

"Dame"

What century is this?

I guess it seems old fashioned, but it's not really too much different from being awarded a medal by the USA president, it's just more obvious as its now part of her title. (Like adding other parts of titles like Mr, Dr, or CPA. M.D., PhD.)

"She was appointed a Dame Commander of the Order of the British Empire (DBE) for services to medicine in the 2009 New Year Honours." (from her wiki) It's a form of recognition for outstanding work. "The Most Excellent Order of the British Empire is a British order of chivalry, rewarding contributions to the arts and sciences, work with charitable and welfare organisations, and public service outside the Civil Service."

 

[RogerBlack]

I guess it seems old fashioned, but it's not really too much different from being awarded a medal by the USA president, it's just more obvious as its now part of her title.

As context, there were 240 new OBEs in 2015, equivalent in the USA to perhaps 1000 a year.

A quick look at https://en.wikipedia.org/wiki/Awards_and_decorations_of_the_United_States_government reveals no remotely close equivalent.
https://en.wikipedia.org/wiki/National_Medal_of_Science - for example - but this is 15/year.

You'd need to sum up _lots_ of the minor medals to get to OBE like numbers.

 

[antherder]

It's a never ending circle…….

What a shame we couldn't hire a flash mob to form a circle on the steps of parliament, and pass a life sized stuffed toy deer to each other...while wearing ME is not MUPS t-shirts...and chanting, "Your guidelines suck, stop passing the buck!

 

[Sbag]

We have met Professor Mark Baker, and been in regular correspondence with him, and in early discussions with him were left with the clear impression that he agreed that the NICE guideline on ME/CFS needed revising.

See these minutes:

http://www.meassociation.org.uk/201...statement-by-the-me-association-10-july-2014/

But he then 'passed the buck' to NHS England - who basically tell NICE when they believe it is time to review or update a guideline

We then met with Dr McShane from NHS England, who didn't give the impression that he regarded a review of the NICE guideline as a high priority item for NHS England

I suppose, at the end of the day, Jeremy Hunt, must be the real big cheese here - but he is just as clever as 'passing the buck' as the rest of them

It's a never ending circle…….

CS

what about trying to use the Parliamentary ME Group, it still exists but just seems to have not done much recently so now would be a good time.

The Medical Officer lady (can't remember name as on previous page) won't be able to intervene yet as NICE (although I think we should rename them NASTY ) have not published a decision yet. I think she would have to get involved at the next level, but the fact that she has been made aware and made her feelings on hiw she thinks it will be handled is positive and might make nasty realise they are under more scrutiny this time.

 

[charles shepherd]

what about trying to use the Parliamentary ME Group, it still exists but just seems to have not done much recently so now would be a good time.

The Medical Officer lady (can't remember name as on previous page) won't be able to intervene yet as NICE (although I think we should rename them NASTY ) have not published a decision yet. I think she would have to get involved at the next level, but the fact that she has been made aware and made her feelings on hiw she thinks it will be handled is positive and might make nasty realise they are under more scrutiny this time.

I'm afraid the APPG on ME at Westminster is inactive at the moment following the general election and we are discussing a number of options for its future

As the main parliamentary activity relating to NICE has been carried out, and is still being carried out, by the Countess of Mar and the Forward ME Group, I think it is best to concentrate our efforts here

I sent the reply from Dame Sally Davies to Margaret Mar yesterday - who is still following developments whilst on holiday from the Lords

CS

 

[charles shepherd]

Further correspondence from 'Corporate Communications' at NICE regarding the MEA request for details of people who have concluded that an update of the NICE guideline on ME/CFS is not necessary

Interesting to note that a patient representative was involved in this decision making process and that psychiatry experts outnumbered neurology experts by 3 to 2!

NB: I am now off to London so won't be around to discuss this response. But I am not gong to admit defeat at this point!

Dear Dr Shepherd


Thank you for your follow up email about the topic experts in respect of the surveillance review for the CFS/ME guideline.


In your email you refer to a request for details of membership of the expert group that reviewed the evidence for NICE. There was not a topic expert group or panel as such, but we did ask topic experts and members of the original guideline development group for their opinion.


To be clear, it is the NICE surveillance team that conducts the literature searches and reviews the evidence. They summarise the relevant evidence and highlight any studies that may have an impact on our recommendations. Information identified by the surveillance team forms the basis of the review proposal which is considered by NICE’s Guidance Executive. I can see that my colleague Alex provided details of the roles within the surveillance team in his previous response.


The final decision about whether an update is needed is based on a balanced assessment of new relevant evidence published since the guideline was developed, the view of topic experts, feedback during consultation and other sources of information on the continued relevance of the of the guideline. The findings of the check on the need for an update are discussed with topic experts. All proposals go through an internal validation process before submission to Guidance Executive. It is Guidance Executive that takes the decision to update the guidance or not.


You commented on our previous email where we say that ‘we do not routinely publish the identities of topic experts’. The use of the word ‘routinely’ was meant to indicate that this is not part of our process, rather than they are available on request. As you may be aware we have been asked for the names of the topic experts in a freedom of information request. I can confirm that we hold the names of the topic experts who were asked for their opinion on the relevance of the published guideline. However we consider that the names are exempt from disclosure under 2 sections of the Freedom of Information Act.


For your information the topic experts are from the following fields: neurology (2), psychiatry (3), paediatrics (1), patient representative (1)


Kind regards

Janet


Janet Fahie

Communications Executive

Corporate Communications

National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United Kingdom

Web: http://nice.org.uk


------------------- Original Message -------------------
From: Charles Shepherd
Received: 27/07/2017 14:58
To: NICE Mail
Subject: Re: EH82697 - CFS/ME review


Dear Alex

Thank you for your detailed reply to my request for details of membership of the expert group that has reviewed the evidence for NICE.

You say that: "We do not routinely publish the identities of topic experts because, while they may express an opinion, they are not part of the decision making body."

The word "routinely" indicates that while publication of names of topic experts is not done as a matter of course, this is something that NICE could do if it wanted to.

And there is nothing in your reply to indicate that membership details of the group have to remain confidential.Our request to NICE is not "routine".

Earlier this week The MEA sent a letter to Sir Andrew Dillon with a petition signed by over 15,000 people calling for a review of the NICE guideline on ME/CFS.

This appears to be the largest ever public vote of no confidence in a NICE guideline by the people it is designed to help.

The fact that these experts are "not part of the decision body" has nothing to do with publishing or refusing to publish the names.

They are playing a key role in the decision making process.So please could you clarify if NICE is actually refusing to disclose this information.

And if so on what grounds.This is a perfectly reasonable request.

The ME/CFS patient community expects transparency from NICE in the decision making process on an issue of great importance to their health and this is not happening here.

Regards

Dr Charles Shepherd

Hon Medical Adviser, MEA

MEA letter (pdf) to Sir Andrew Dillon, Chief Executive at NICE, containing the 15,000 signature petition

http://www.meassociation.org.uk/wp-...tion-Letter-to-Sir-Andrew-Dillon-24.07.17.pdf

On Wednesday, 26 July 2017, 16:08, NICE Mail <nice@nice.org.uk> wrote:


Dear Dr Shepherd,

Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (CG53).

In reaching our provisional decision the surveillance review team undertook extensive searches to identify any new primary and secondary studies, including any economic studies. The focus is on the scope of the published guideline, but any additional areas or changes in practice that are identified during the process are also considered, if they fall within the referral of the published guideline. A literature search is conducted across a range of sources, selected according to their relevance to the topic and are based on those used in the published guideline.

We can’t provide the names of the surveillance team but it is made up of a Technical Analyst, Technical Adviser, Clinical Adviser and the Associate Director – Surveillance.

Topic experts, including members of the original guideline committee, are asked for their opinion, in their personal capacity, on the relevance of the published guideline, recent developments in the topic area and their knowledge of any new important evidence since publication of the guideline. Guideline committees are responsible for the development of guidelines and we publish the membership of them. We do not routinely publish the identities of topic experts because, while they may express an opinion, they are not part of the decision making body.
The review proposal is made by the review team and the decision on whether to update the guideline is made by our Guidance Executive. The Guidance Executive considers and signs off guidance and implementation for publication. It meets every week and is made up of NICE executive directors, guidance centre directors and the communications director. Its current membership can be found on the NICE website.
I hope this information has answered your question.

Kind regards,

Alex

Alexander Smith
Communications Executive (Corporate Communications)
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom

 

[slysaint]

However we consider that the names are exempt from disclosure under 2 sections of the Freedom of Information Act.

This should be pursued.
Think Alem, QMUL PACE.
https://ico.org.uk/for-organisations/guide-to-freedom-of-information/what-is-the-foi-act/
"This does not prevent you voluntarily giving information to certain people outside the provisions of the Act."

 

[Chrisb]

All we learn from this is that the psychiatry and paediatrics members of the group could outvote the others 4 to 3.

 

[Valentijn]

All we learn from this is that the psychiatry and paediatrics members of the group could outvote the others 4 to 3.

Are there even any non-awful neurologists in England, in regards to ME patients?

 

[Binkie4]

And since the patient representative was no doubt selected to fit a certain model, the vote becomes 5 to 2; and as @Valentijn pointed out, neurologists are not known for their support of pwme which makes the vote 7 to 0 which is a fair representation of the NHS treatment of pwme.

 

[lilpink]

I'm inclined to think that the scurrilous goings on at the JR have left NICE with the notion they are untouchable as far as ME is concerned. 'We' were never going to win this.

 

[SamanthaJ]

The irony is that if someone was planning to harass the topic experts they could probably guess half of them. All the anonymity does is prevent legitimate complaints about COIs etc. Which is presumably the point of it.

 

[Snowdrop]

Are there even any non-awful neurologists in England, in regards to ME patients?

My thoughts too on reading that. Neurology seems to not mean what one would expect it to mean. In the UK certainly and elsewhere likely it has come to be a sub-unit of psychiatry--their validating arm where real biological tools 'prove' psychiatric illness.

ETA: at least neurology as it applies to MUS

 

[Esther12]

Not sure where I got linked to, but was just flicking through NICE's new document on 'Suspected neurological conditions':

Recommendations 36–37 – Chronic fatigue syndrome, fibromyalgia and functional neurological disorder

Functional symptoms are complaints that are not primarily explained based on physical or physiological abnormalities. They are likely to have an emotional basis. They may mimic neurological disorders. Diagnosis may depend on exclusion of a medical explanation of the symptoms, and require a high level of clinical expertise and judgement. Functional symptoms can complicate a medically explained illness and cause difficulties in diagnosis and delineation. Difficulties with memory and concentration are a core diagnostic criterion for chronic fatigue syndrome and myalgic encephalopathy (CFS; ME) and may be present in people with fibromyalgia and functional neurological disorder. The committee also considered that people may benefit from an explanation that functional symptoms are commonly accompanied by problems with concentration and memory, and that this may reduce the overall load on clinical services. People with CFS/ME should be referred according to local pathways (see CG53). The committee considered that a referral for neurological assessment in these cases is not necessary, unless the cognitive difficulties have a significant impact on everyday life. However, this patient population may still need medical or psychological support, depending on the nature of their condition, where reassurance is not enough, and the symptom has a significant impact on everyday life. The committee discussed that access to clinical health psychology can be limited but wanted to point out that, where pain is a prominent accompanying symptom (for example, fibromyalgia or chronic, daily headache), a pain clinic may have appropriate resources. A recommendation which covered these considerations was thought likely to help GP’s to direct these patients to more appropriate channels than neurology services.

https://www.nice.org.uk/guidance/GID-CGWAVE0800/documents/draft-guideline