Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, 2006

I am still on the case but it's hard going! I did alert NICE to the "anomalies" both in January and the May Scoping meeting.
Trouble is, I can get no one with "authority" to take this forward for me. I have tried MEA and Forward ME....... Might contact Neil Ridley MEA who did a brilliant campaign in 2006-2007?

 

I have also alerted David Tuller about this.

 

Thanks for the update, and for all your work. I expect that the NHS Health Network people are going to want to do what they can to ignore these problems for as long as they can.

 

Just bumping this thread up again in anticipation of Wednesday...

https://www.nhshealthatwork.co.uk/chronic-fatigue.asp

The 2006 guidelines are still live on the NHS website.

 

Bump. I just came across this online, glad it has already been spotted, do we know if any of the charities are are the case now?

 

Neil Riley MEA did a splendid job on this many moons ago in 2006 .... when eveyone else was focusing on NICE pre 2007.... and his letter helped get Dr Ira Madan to come before the APPG.
Maybe the APPG can pick this up once again,?......because this guideline was due for review I think in 2013 2014 but they didn't bother to do it.... so it's "past it's sell by date" .
I will get HB in Scotland to draw this to attention of Carol Monaghan.

https://www.nhshealthatwork.co.uk/health-work-wellbeing.asp
The Government's Work and Health Unit

We are dedicated to maintaining a healthy, motivated workforce


The Work and Health Unit works to improve the health and employment outcomes for disabled people and those with health conditions.

The Work and Health Unit is a cross-government unit, jointly sponsored by the Department for Work and Pensions and the Department of Health and Social Care. It works across government and the wider public sector to develop solutions that benefit disabled people and those who support them.

Following a consultation, the Work and Health Unit published Improving lives: the future of work, health and disability. This paper sets out how the government will make and influence changes across the welfare system, the workplace and health services to see one million more disabled people in work by 2027.

Edit Review date in Document 2011 so 10 years past it's sell by date!

 

FYI , don't wish to bore you all with my personal hobby horse and history to my efforts to GET ( excuse the pun) .....t his taken down....since 2005!!!

Mark Baker at the Scope meeting said NICE had no jurisdiction over FOM (or NHS Health & Work) - true as FOM they are a charity! ( see below in red)

I wrote to Forward ME in 2018; (but they couldn't proritise this at the time. "We discussed NHS Health at Work at our last Forward-ME meeting and decided that, as it was so old, there was little point in taking it up as an issue.")


I had written the following as it was a HUGE issue for me, and felt it was critical to the outcome of the NICE Review;

'Thank you for the reply,
The two issues are linked, MUS /IAPT and NHS (Plus) Health at Work, as Dr Madan did a MUS lecture last year for FOM annual lecture and as the FOM “expert” on CFS, will no doubt carry this message across to NHS Health At Work Guidance review (which NICE review of ME references and suggests it will align with)!
I anticipate this will be MUS "by the back door”, but it will sit along side the IAPT CCG programme in a rather neat, consistent, coherent package……….so convenient for the DWP employers, and liaison psychiatry!
I will take the Surveillance statement from July to the NICE Scoping event in May (if they let me in!!) and see if i can tease out what is going on ahead of the FOM International Annual Conference (with the great and good) in June…..
I will approach Jo Edwards to see if he could go to this conference and petition Dame Carol Black, (Dame Carol Black. Expert Adviser on Health and Work. Public Health Policy Directorate) , as (rheumatologist to rheumatologist!), at least to see where the new guidance is likely to go and importantly, when!"



My previous email in March 2018:

"When the ME Community’s eyes were firmly caste on NICE Guideline Development during 2006, I espied this and decided it needed someone to focus on it.

I handed the info to Neil Ridley who kindly took the issue forward and it ended with the APPG after DesTurner was persuaded of the importance of a challenge to NHS Plus head of Service Dr Madan (whom is still the Parliamentary OH doctor)- you may wish to engage with her there…….?
I have all emails and correspond pertaining to this her still.

Critical importance( Health Work and PHI):
I can further explain the current potential significance of this later as a mini briefing which may help you? (i.e. history of the Guidance- how I came about, how it developed and what has happened since 2006-2008).
I have had a need to revisit this because I am involved with helping a friend who is providing DT with her definite evidence (2004-2009) about the conflict of Interest issue re the Insurance /PHI troubles for ME patients, NICE 2007 and NHS Plus Guidance 2006 cited in her paperwork by Scottish Provident (SP) CMO (Prof PW) at the time.

Her case was finally successfully resolved when she enlisted Royd’s James Miller Craig to act for her- SP threw in the towel at that point.
They knew it would potentially cost them more to fight than to pay out!
James Miller Craig was called by ME to a select committee hearing on these issues I think.
James is Partner at Royds Withy King. This arose from the successful merger in September 2016 of Royds and Withy King. The enlarged firm has offices in London, Bath, Oxford and Swindon.
He specialises in Personal Injury & Insurance related disputes as well as some General Dispute Resolution work.
He is recognised as an expert over a number of years including by the ME Association & Action for ME charities in respect of his work in relation to Permanent Health Insurance ( PHI ) policy disputes

https://www.theguardian.com/money/2003/aug/16/jobsandmoney.healthinsurance

"James Millar Craig, of London solicitors Royds RDW, who specialises in PHI claims, welcomes the decision. "We are constantly coming across insurers attempting to wheedle out of liability under group schemes and the guidance the Court of Appeal has given may make employees' claims easier to pursue".

Lord Justice Sedley pointed out that Swiss Life's consultant had failed to identify any job Mr Jowitt actually could do. As the Court of Appeal had no up-to-date information about his condition it could not finally decide that question and sent it back to a tribunal for consideration.
People who have claims refused by employers or insurers should not regard that as the last word on the matter. Often it is only the threat of legal action that results in what is actually quite a clear legal liability being honoured.”

This was behind the PHI issue……..
http://www.nhshealthatwork.co.uk/images/library/files/Clinical excellence/CFS_full_guideline.pdf (2006)

Leaflets- 2008.
This guidance’ referenced at “law” by PW as CMO of SP/SR is still accessed by all NHS Occupational Health Departments!!!!

I have just rung my local hospital ( March 2018) to check it out.

It needs to be reviewed /withdrawn!

http://www.nhshealthatwork.co.uk/images/library/files/Clinical excellence/CFS_full_guideline.pdf (2006)

Leaflets- 2008.

---------------------------------------------------

http://www.fom.ac.uk/about-us

About us
The Faculty of Occupational Medicine is a charity committed to improving health at work.
It is the professional and educational body for occupational medicine in the UK and seeks to ensure the highest standards in the practice of occupational medicine.

Our Vision
Healthy working lives for all.
Our Position
The Faculty of Occupational Medicine believes everyone of working age has the right to benefit from healthy and rewarding work while not putting themselves or others at unreasonable risk. They have the right to access competent occupational medical advice as part of comprehensive occupational health and safety services, ensuring that they can access the rewards of good employment and avoid preventable injury and illness caused or aggravated by work.
Our Mission
To drive improvement in the health of the working age population through outstanding occupational health capability by developing and supporting the good practice of occupational medicine. To provide public benefit through the protection of people at work by ensuring the highest professional standards of competence, quality and ethical integrity.
Our Values
Collaborative, Authoritative, Relevant, Ethical.
Governance

The Faculty is an incorporated charity, accountable to the Charity Commission, the Office of the Scottish Charity Regulator and Companies House.
It is governed by the Memorandum & Articles of Association.

The Faculty also has a set of Governance Regulations (new version currently under development) which set out its procedures across all areas of the organisation.

Staff List and Contacts
Main telephone number: 020 7242 8698
Members may wish to contact members of the Council, to seek information or to ask for a topic to be debated by the Council.
To submit your enquiry, please send an email to fom@fom.ac.uk if your enquiry is for a particular Council member, we would be grateful if you could mark it for their attention. We endeavour to respond within 28 days. if your enquiry is urgent please telephone Alpa Yadav on 020 3116 6901.
The Board of Trustees

The Board of Trustees are the charity directors of the FOM. They are responsible for the strategic direction of the organisation and for its governance.

The Board of Trustees meets four times a year, these meetings are held at the FOM offices in London.
One meeting is followed by a strategy day, which is also the time when the board spends a day focusing on its own development, performance and strategic goals.

Members can access approved minutes of past Board Meetings via the member login

 

Now NICE is published, patients, the wider public and medical profession need to have an up to date consistent, unconfused and unambiguous line of advice, and include sets of directions/ statements about the NICE Guidance for ME and CFS consistent with NG206.
This approach MUST be reflected across all NHS websites, or any linked to NHS partner providers, e.g. in charities, non governmental bodies or arms length organisations of private sector and Communities Interest Group Service Providers ?

Request from LOcalME;

As the charities are discovering, confusion and contrary statements and approaches prevail on these vital websites.
I believe this is in hand on the ‘to do’ list.

1. Firstly can we request that all guidance documents which are contrary to NICE, or should have been reviewed years ago and were not, ideally be instructed to be taken down?
2. Failing that a CLEAR WARNING OF HARMS Flag on website to the effect the guidance is inconsistent with NICE NG206 and may contain views that constitute harms?

regards,

B


The following is 10 years outside its review date.
There has been no oversight or monitoring of it since 2013.
It needs taking down and the leaflets withdrawn as as well as harms it causing terrible consequences for ill health related work situations and for benefit claims and personal PHI claims. ( often attached to mortgages). It’s pernicious effects are still being experienced as it still is accessed and used by local Foundation Trust Staff.- I have checked recently.

(I have the full audit trail of this from 2005-2006 available electronically as reference.)


Specific site of concern

https://www.nhshealthatwork.co.uk/health-work-wellbeing.asp
The Government's Work and Health Unit
Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, 2006
The 2006 guidelines are still live on the NHS website.

I expect that the NHS Health Network people are going to want to do what they can to ignore these problems for as long as they can.
Maybe the APPG can pick this up once again?

Justification

1. Because this guideline was due for review I think in 2011, and ‘project” was need 2013 2014, they didn't bother to do it.... so it's "past it's sell by date” . Please draw this to attention of APPG charities and Carol Monaghan.
3. inconsistency with NICE NG206 and may contain views that constitute harms.

Question from LocalMe

Have you checked as a matter of interest were the Faculty of Occupational Medicine stakeholders and did they submit comments? - (Yes they were and did comment, see below)

Faculty of Occupational Medicine was listed - https://www.nice.org.uk/guidance/ng206/documents/stakeholder-list-2

Faculty of Occupational Medicine Guideline 027 -28 Section1.11.6

We do not agree with this statement: Advise people with ME/CFS to reduce their activity if increasing it triggers symptoms, or if they have fluctuations in their daily energy levels.
Thank you for your comment.
A fter considering the stakeholder comments this has been edited to,’ Advise people with ME/CFS how to manage flare-ups and When returning to work it is important that health care professionals give reassurance that an increase in symptoms on return to work is unlikely to mean harm in most people.Reference: Waddell G, Burton AK. Concepts of rehabilitation for the management of common health problems: The Stationery Office; 2004.relapses (see the section on managing flare-ups in symptoms and relapse).’Faculty of Occupational MedicineGuideline021Section 1.9.1
We are concerned that this recommendation may increase fear avoidance beliefs about returning to work.
We would prefer NICE to give ME/ CFS sufferers the following guidance:
•Work is generally good for health.
•Work provides purpose, boosts self-esteem and enables financial independence.
•Worklessness is associated with poor physical and mental health and increased risk of self-harm
•Ask the person what they believe are the main factors impeding their return to work.
•Ask them if they can identify solutions to their return to work obstacles
•Do they need adjustments to their work to enable them to return (e.g. flexible hours/ working from home/special equipment)?
•Encourage them to liaise with their employer to see if the adjustments could be facilitated •If they need assistance with paying for any adjustments, they or their employer may be eligible for financial assistance from Access to Work (https://www.gov.uk/access-to-work)
Thank you for your comment and information. After considering the range of stakeholder comments the recommendations in this section have been reordered starting with accessing support. ‘ and discuss with’ has been added to the recommendation.
The discussion points you have raised have been summarised and added to the committee discussion in evidence review A.
Ask if they have access to occupational health advice via their work; if they do encourage them to make contact with their occupational health department
References •Black C. Working for a healthier tomorrow. Dame Carol Black's Review of the health of Britain's working age population. Norwich UK: TSO (The Stationary Office); 2008.•Health matters: health and work. PHE, 2019

 

I think we ought to get some mileage out of this opportunity and point out the NEW NICE NG206.......?

https://mailchi.mp/ac64a14435ed/nhs-health-at-work-network-news-update-13414009?e=3a65873abf

IN THIS MONTH’S NEWSLETTER...
Dear Colleagues
I’m not sure how we have reached December? What a Year it has been! As I reflect on this last year as an NHS OH Service Manager, it really has been one like none other. This time last year, COVID vaccinations were just being launched and if I’m honest I didn’t think this vaccine programme would still be taking up large proportions of my working day a year ahead… Maybe I was a little naïve! Nationally, NHS OH has really been placed on the map over the last 12 months as a direct result of how we have all responded to the COVID pandemic. We should feel proud of what we have achieved with limited resource.

I hope you are excited about the NHSE/I ‘Growing Occupational Health Programme’ and how this will develop our profile as we progress into 2022. Please do take note of the fantastic funded OH Leadership courses available (see item 1) and make sure you sign up – opportunities are available for both current and future leaders for these fabulous education offerings available to us over this next year.

Over the last year the Network has represented NHS OH in a variety of settings (NHSE/I, SEQOHS, Council for Work & Health, NHS Employers) and will continue to do so throughout 2022. We all face the unknown territory and challenge of ‘Vaccination as a Condition of Deployment’ as we start the New Year, but as a network of services and practitioners we will learn from each other as we share examples of how this work is progressing across regions.

On behalf of the Network Board, I really do want to wish you all a very Happy Christmas and New Year. I hope you all get some precious time with those that you love. After a very difficult 12 months, our family and social connections are no longer taken for granted and very much valued.


Best Wishes

Hilary Winch
Chair, NHS Health at Work Network

Funded OH Leadership Development Programmes for NHS Colleagues

The Growing OH Team are pleased to announce a range of funded development opportunities for our NHS OH leaders and practitioners.

The prospectus provides an overview of all the leadership and service improvement development opportunities for NHS employed OH people (and those working closely with OH) that are fully funded by NHS England and Improvement (NHSEI).