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Medical Officer for England respond the MEA's petition

Countrygirl

Senior Member
Messages
5,370
Location
UK
http://www.meassociation.org.uk/201...tition-against-nice-guideline-08-august-2017/

Dame Sally Davies, the Chief Medical Officer for England, today responded to our petition – supported by over 15,000 people – calling on the National Institute for Care and Clinical Excellence (NICE) to completely review and update its guideline on ME/CFS.

Though not able to intervene personally, Dame Sally said she was “confident that NICE will take the comments it has received from stakeholders in response to its recent consultation fully into account in reaching a final decision.”

She also confirmed that we would hear a final decision from NICE in mid October. We will continue to monitor the situation and report any further develop
ments.

Click on the link for the actual letter.
 

snowathlete

Senior Member
Messages
5,374
Location
UK

What is her confidence based on exactly? I have seen no reason to be confident at all. Has she heard something I haven't then and if so what exactly has she heard? I think if people make statements like these they should explain why, otherwise it just comes across like an hollow attempt to placate people and not have to actually acknowledge there is a problem and do something about it.
 
Messages
2,125
"
NICE is constituted currently as a Special Health Authority, and is accountable directly to the NHS chief executive - the permanent secretary at the Department of Health - and the Secretary of State for Health.

With effect from 1 April 2013, the status of NICE will change from a SHA to that of an executive non-departmental public body. Its name will also change to the National Institute for Health and Care Excellence to reflect changes being made to its role and functions; the acronym will remain the same."

"
NICE's clinical credibility was called into question by the Relenza affair, when the Institute's findings were challenged. This led to criticism of the procedures by which NICE contracted out its research work. Reforms undertaken since the Select Committee report have largely eliminated this complaint, as standards of procurement have improved. This lack of credibility led to a situation where NICE was working largely in competition with the alternative assessment bodies it was intended to supersede for some time.

The Institute also has a controversial responsibility for encouraging "innovation" in the pharmaceutical industry, and some of its decisions have led to concern about its independence from business."

"It has also been argued widey that NICE should have greater responsibility for selecting its own work agenda. The priority given to technology appraisals - focusing on one specific treatment - has been questioned over its narrowness; it has been argued that NICE should focus its attention on clinical guidance, which looks at the whole range of treatment options for a particular condition."

"
In the meantime the Department of Health has agreed an initial list of joint NHS/social care topics for NICE to begin working on as from April 2013.

These include:autism in adults and children; mental well-being of older people in residential care; the transition between health and social care, including discharge planning, admission avoidance, reducing readmissions and reducing unnecessary bed occupancy; medicines management in care homes; management of physical and mental co-morbidities of older people in community and residential care settings; domiciliary care; transition between children and adult services; child maltreatment."

So with the change in status in 2013 it is no longer "
accountable directly to the NHS chief executive - the permanent secretary at the Department of Health - and the Secretary of State for Health." (?)

So who is it now accountable to?:confused:
 

charles shepherd

Senior Member
Messages
2,239
"
NICE is constituted currently as a Special Health Authority, and is accountable directly to the NHS chief executive - the permanent secretary at the Department of Health - and the Secretary of State for Health.

With effect from 1 April 2013, the status of NICE will change from a SHA to that of an executive non-departmental public body. Its name will also change to the National Institute for Health and Care Excellence to reflect changes being made to its role and functions; the acronym will remain the same."

"
NICE's clinical credibility was called into question by the Relenza affair, when the Institute's findings were challenged. This led to criticism of the procedures by which NICE contracted out its research work. Reforms undertaken since the Select Committee report have largely eliminated this complaint, as standards of procurement have improved. This lack of credibility led to a situation where NICE was working largely in competition with the alternative assessment bodies it was intended to supersede for some time.

The Institute also has a controversial responsibility for encouraging "innovation" in the pharmaceutical industry, and some of its decisions have led to concern about its independence from business."

"It has also been argued widey that NICE should have greater responsibility for selecting its own work agenda. The priority given to technology appraisals - focusing on one specific treatment - has been questioned over its narrowness; it has been argued that NICE should focus its attention on clinical guidance, which looks at the whole range of treatment options for a particular condition."

"
In the meantime the Department of Health has agreed an initial list of joint NHS/social care topics for NICE to begin working on as from April 2013.

These include:autism in adults and children; mental well-being of older people in residential care; the transition between health and social care, including discharge planning, admission avoidance, reducing readmissions and reducing unnecessary bed occupancy; medicines management in care homes; management of physical and mental co-morbidities of older people in community and residential care settings; domiciliary care; transition between children and adult services; child maltreatment."

So with the change in status in 2013 it is no longer "
accountable directly to the NHS chief executive - the permanent secretary at the Department of Health - and the Secretary of State for Health." (?)

So who is it now accountable to?:confused:
 
Messages
49
http://researchbriefings.files.parliament.uk/documents/CBP-7206/CBP-7206.pdf

Pg 15
It is important to note that NICE does not negotiate drug prices and only around 40% of drugs new to the UK market are evaluated by the NICE technology appraisal process each year. NICE does not decide on the topics for guidance and appraisals. Instead, topics are referred to NICE by the Department of Health, selected on the basis of a number of factors, including the burden of disease, the impact on resources, whether there is inappropriate variation in practice across the country, and factors affecting the timeliness or urgency for guidance to be produced.

Probably far too simple but if

"topics are referred to NICE by the Department of Health"

The Department of Health should still be partly if not wholly responsible
 

Aurator

Senior Member
Messages
625
What is her confidence based on exactly? I have seen no reason to be confident at all.
I read “confident that NICE will take the comments...fully into account...” as meaning that she is confident NICE will take careful note of the widespread opposition to the initial decision, will loathe PwME even more than they did before for not doing the decent thing and quietly going off into a corner to die, and will stand all the more firmly by that initial decision.
 

SamanthaJ

Senior Member
Messages
219
I seem to remember reading that NICE now comes under NHS England. Unfortunately cannot currently recall where I read it. Here, probably! It confused me at the time because NICE guidance also applies to Wales, which would make it extra-undemocratic, so hopefully it's not true. CEO of NHS England is Simon Stevens, who was described in a BBC radio programme as a friend and former neighbour of Clare Gerada :(

ETA: Can't find anything about NICE on the NHS England website though.
Edit again: Nothing on NICE site about being under NHS England either. Also, re:Wales NICE states that

"Decisions on how our guidance applies in these countries are made by the devolved administrations, who are often involved and consulted with in the development of NICE guidance".

So I've just been talking nonsense.
 
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