News from Doctors with ME

[bobbler]

Well, Dr Hng has definitively decided to stay on track.

Is anyone medico-legal (or close enough they know what it looks like) on here?

They definitely don't write in business-speak, so I'm curious to know whether this is the etiquette for medico-legal-speak and am open to knowing the answer either way

 

[Arvo]

It very much looks like the message is not getting through. Despite my mail exchange with Dr Hng and my tweets with Dr Ramyar, he posted this yesterday on DwME’s Twitter account. More (superficially) legal speak.

I think recording ME history is highly important, but what is this?


How hard was it to write something like:

"We think the term "Regulatory Capture" is an important one to know when discussing ME history.

RC has been key to many policy problems.

{wikilink}"


Without that absolutely batshit poll attached. (Seriously, wth...)


And without what to me at 7 am seems a very incorrect use of language. Regulatory capture is not "a policymaking term", it's a term that describes how policy can be made. And I'm failing to see how regulatory capture is the key to policy answers, it seems like something good governmental policymaking avoids. (Or is it just early morning me and the language barrier?)

Had a chuckle at the use of the word "normal" in "This normal policymaking term is the key to many policy problems + answers", it has a defense built in. Although that in itself is a bit problematic too, using your organisation's twitter account for an underhand dig by emphasising "We at DwME are using normal words."



Edited to add: I now see that de Hng is directing people who do not understand to "a summary thread" on her Twitter.

Which

1. should not be necessary;
2. no, really, have you ever encountered an organisation that put up weird stuff on the social media of their organisation, their public face and communication channel, where the director said: "hey, come to my Twitter so you understand better"
3. has no link to the "summary thread" so in the future it would take ages to find

 

[chrisb]

It would be interesting to know the examples of "regulatory capture" which RR has in mind. Well, vaguely interesting. It clearly doesn't apply to the recent NICE committee. It probably did to the 2007 one. There was an earlier committee where the psychiatrists resigned rather than put their names to it. So it would not have applied there. There was a committee in 1996 but that would probably not have fallen within the concept of regulatory capture.

RR needs to make a case for his concept and provide the evidence, not just throw it out there for public consuption.

There have been many forces and influences at work ,but regulatory capture does not quite encapsulate them. The problem has been lack of regulation rather than regulatory capture.

 

[Trish]

Dr Hng on this Twitter thread gives her explanation in defense of the 45 minute video and the use of language. She is referring people to her Twitter thread if they question the over-complicated language:


1/ Of all the things we have produced what people find hardest to understand are the ones dealing with medico-legal and compliance issues. This is because people are not used to the language.

2/ However doctors & orgs do interact with the law. Doctors receive lectures dealing with those aspects that are relevant to them. This includes topics such as consent, assault, euthanasia, medical negligence, indemnity, medical records, data protection, the list goes on.

3/ We also discuss ethics, the role of religious beliefs, end of life care, clinical guidelines, communications (inc social media), diagnostic coding, whistle blowing, etc – which maybe isn’t primarily about law but refers to it where relevant and the law still applies.

4/ When legal topics are being delivered in a lecture the language is explained by the lecturer and there is no problem understanding it. Our 45 min video on rule breaking in the context of #MECFS is akin to this. 45 min is a perfectly normal length of time for a lecture.

5/ What’s perhaps missing is the face-to-face interaction, where ordinarily the meanings of words will be clarified, ideas elaborated. Such as “regulatory capture”, or “glass ceiling”. We will have to deal with these (perhaps by providing a glossary – pls bear with us).

6/ Nevertheless, the video is made available for all to whom it is relevant, which includes any health care professionals looking after #MECFS patients, their employers, healthcare providers, their indemnity providers, and even
@DHSCgovuk
itself.

7/ Issues of particular relevance in #MECFS = equality, consent, medical negligence. #BolithoGloss principle and #RegulatoryCapture should be mainstream.

8/ As well as education for health practitioners / providers, this video proposes an ACTION PLAN to
@DHSCgovuk
to ensure success of its new ME/CFS Delivery Plan. At speed + at scale. All involved at all layers of healthcare shld be made to understand the principles in the video.
9/ One line summary: Education + hoping behavioural change will follow is not enough. Enforceable standards and removal of optionality is req’d due to widespread #InstitutionalisedDiscrimination, ignorance and #RegulatoryCapture in #MECFS.

10/ Actually these legal principles and practice standards are already not optional but they are mostly unknown or ignored in #MECFS. They are already enforceable through legal action as the scientific consensus is clear.

11/ So for scaled and timely success they must be embedded in every decision by the
@DHSCgovuk
ME/CFS Delivery Plan component groups, and cascaded all the way down to the frontline worker. All layers of the system must also be educated on these principles, risks and obligations.

12 seems to be missing.

13/ Success is not hard to achieve.
@DoctorsWithME
offers our expertise and stands ready to lead the way.
https://doctorswith.me/

 

[Trish]

Picking up just one of Dr Hng's tweets:

5/ What’s perhaps missing is the face-to-face interaction, where ordinarily the meanings of words will be clarified, ideas elaborated. Such as “regulatory capture”, or “glass ceiling”. We will have to deal with these (perhaps by providing a glossary – pls bear with us).

As far as I can see the problem here is misuse of terms. I looked up glass ceiling just to make sure there wasn't a second definition I wasn't aware of:
_____________

From The Cambridge English Dictionary:
glass ceiling
a point after which you cannot go any further, usually in improving your position at work:
- Various reasons are given for the apparent glass ceiling women hit in many professions.

From Merriam Webster dictionary:
Definition of glass ceiling
: an intangible barrier within a hierarchy that prevents women or minorities from obtaining upper-level positions
____________

The use in the DwME written introduction to the video:

Further to our recent statement regarding major UK announcements, the above presentation provides the solution to concerns about new DHSC ME/CFS Delivery Planning mechanisms and final implementation. Current glass ceilings will limit success of this new process and perpetuate likelihood of future frontline failures. Durable outcomes are needed that can survive current and future processes. Legitimacy and public health outcomes both depend on this durability. Working Groups must be decisively required to take a regulatory compliance approach to resolve these limits.

https://doctorswith.me/normalised-medical-rule-breaking-and-the-uk-dhsc-me-cfs-review/

So they appear to have chosen the term 'glass ceilings' to mean something like limitations on implementation plans because they are not legally enforceable.

Rather than inventing new uses for terms that mean something different, then telling patients we're not qualified to understand them, it would seem to me to be better to write their documents in plain English in the first place.

Edit: corrected typo

 

[Arvo]

It would be interesting to know the examples of "regulatory capture" which RR has in mind. Well, vaguely interesting. It clearly doesn't apply to the recent NICE committee.

I think regulatory capture is probably a good term to use in the context of what happened with ME. I see why that is of relevance for DwME, because when you understand what exactly happened you have a better idea of where the problem lies and how you can effectively bring change.

What I don't understand really is why they are discussing this outwardly in such a front and center fashion. Is it an attempt at education? But would that be useful atm? I am also working on writing on ME history, which I think will serve a purpose, but when your goal is doctor education and aiding the setup of new policy that better reflects scientific reality and the needs and experience of patients, is it necessary to put outward focus on RC?

The problem has been lack of regulation rather than regulatory capture.

If I understand the term correctly, then it has definitely been a matter of both being a problem.

 

[chrisb]

which regulatory bodies are deemed to have been captured, and when? It is necessary to be more specific than merely alleging regulatory capture. What is the evidence?

 

[Peter T]

I had assumed that Doctors with ME recent comments/tweets about ‘regulatory capture’ related to the attempts by members of various medical Royal Colleges to hijack the NICE guideline process at the final stages. However NICE came through. In which case talking about that failed attempt now wouldn’t it be more appropriate to talk about ‘attempted regulatory capture’ or ongoing attempted ‘regulatory evasion’?

Are there current issues relating to ME and ‘regulatory capture’, rather than historic issues or potential future attempts at ‘regulatory capture’? If we were talking about worldwide then for some countries it is very much a current issue; for some the battle between the realists (ie us) and the BPS ideologues over national guidelines is ongoing, not so much here even in the UK in the context of Sajid Javid’s current initiative. So I am unsure why they see the need to initiate discussion on this topic without context or examples at this point in time.

Are we talking about a philosophical understanding of the processes history in relation to how ME is treated across time or are we trying to progress advocating issues for people with ME here and now?

 

[Jonathan Edwards]

To me the use of glass ceiling seems reasonable, if stretched. I think it means limits due to vested interests within an establishment blocking justified progress.

My concerns about this stuff is not sommuch the confused language, although it is, as the ham-fisted seeming approach that does not appear to make any sense in terms of any audience worth talking to in this way. As people have said, it plays straight into the hands of those who accuse patients of being belligerent. And it does not help implying 'we are patients, and what's more doctor patients, and you are just patients'. Nobody is going to take this seriously as far as I can see.

 

[Trish]

My point about the use of glass ceiling is that it's an unhelpful distraction to trying to get their point across.

I took it to mean something different - more about the groups recommendations hitting a limitations because their recommendations are not tied to legal enforcement.

So recommendations may fail on changes of leadership of the DHSC with government reshuffles, which may mean the whole thing lapses.

 

[Trish]

A few thoughts on this current problem and then I'll try to step away from this discussion. It's using up too much of sick people's energy unnecessarily and creating bad feeling that needn't have happened if DwME had taken on board, or even acknowledged, the concerns about their communications months ago. I hope they are working on remedying this now. We all want the same things, and I don't doubt the good intentions of those working hard in DwME for the good of all of us.
_________________

A concern I have about some of the products of DwME in what they seem to call the medico legal field is it's all very well producing documents and videos, but if they just sit on the DwME website with no avenue to get the ideas through to those who could do something about them beyond asking patients on Twitter to bombard the Secretary of State with the link, what's the point?
_____________

Arguing with patients about these problematic documents seems to place distance between doctors and 'other' patient that is disappointing, and inevitably adds to the 'them and us' gap we've suffered for decades where we've been ignored and told doctor knows best. It's quite triggering for some of us to be told that we're just patients and can't be expected to understand the important work DwME are doing, especially when many of us are highly educated and experienced in relevant fields.
_______________

Other ME organisations in the UK have worked hard for decades to get the ear of relevant bodies like NICE, and medical research funders, and government via the All party parliamentary group, the CMRC PAG, and Forward ME, to make necessary changes, and have at last started achieving some success. DwME as an organisation are too new to claim credit for this progress, but I'm pleased they want to contribute to next stages - provided they do so wisely.
_____________________

I think the most useful thing DwME are doing and I hope will continue doing is their work on educating their colleagues about ME/CFS. Dr Nina Muirhead is doing good work on this and I'm pleased to see her being involved in these new government groups.

DwME have produced some useful summaries of the key points from NICE guidelines for patients to share with their doctors, discussed here:
Doctors with ME: Putting it into Practice: What NICE ME/CFS means for GPs
____________________

Maybe DwME, working alongside other ME organisations will in the future be able to work on getting more legal heft behind the NICE guideline implementation. I suspect this will need to be done on a district by district basis, with the NHS implementation of being farmed out to local CCG's.

Perhaps it would be a useful way forward for DwME to work with Forward ME to created some sort of clear explanation to CCG's about their legal responsibility to provide scientific evidence based care for pwME as part of getting the guideline locally implemented. I can't see that government is going to decree that all clinicians must follow the guideline. The clue is in the name, it's a guide, not a mandate.
_________________

I hope DwME will focus on their education work, research and working with other organisations on advocacy. But of course it's up to them where they put their energies. I wish them well.

 

[Peter T]

A few thoughts on this current problem and then I'll try to step away from this discussion. It's using up too much of sick people's energy unnecessarily and creating bad feeling that needn't have happened if DwME had taken on board, or even acknowledged, the concerns about their communications months ago. I hope they are working on remedying this now. We all want the same things, and I don't doubt the good intentions of those working hard in DwME for the good of all of us.
_________________

A concern I have about some of the products of DwME in what they seem to call the medico legal field is it's all very well producing documents and videos, but if they just sit on the DwME website with no avenue to get the ideas through to those who could do something about them beyond asking patients on Twitter to bombard the Secretary of State with the link, what's the point?
_____________

Arguing with patients about these problematic documents seems to place distance between doctors and 'other' patient that is disappointing, and inevitably adds to the 'them and us' gap we've suffered for decades where we've been ignored and told doctor knows best. It's quite triggering for some of us to be told that we're just patients and can't be expected to understand the important work DwME are doing, especially when many of us are highly educated and experienced in relevant fields.
_______________

Other ME organisations in the UK have worked hard for decades to get the ear of relevant bodies like NICE, and medical research funders, and government via the All party parliamentary group, the CMRC PAG, and Forward ME, to make necessary changes, and have at last started achieving some success. DwME as an organisation are too new to claim credit for this progress, but I'm pleased they want to contribute to next stages - provided they do so wisely.
_____________________

I think the most useful thing DwME are doing and I hope will continue doing is their work on educating their colleagues about ME/CFS. Dr Nina Muirhead is doing good work on this and I'm pleased to see her being involved in these new government groups.

DwME have produced some useful summaries of the key points from NICE guidelines for patients to share with their doctors, discussed here:
Doctors with ME: Putting it into Practice: What NICE ME/CFS means for GPs
____________________

Maybe DwME, working alongside other ME organisations will in the future be able to work on getting more legal heft behind the NICE guideline implementation. I suspect this will need to be done on a district by district basis, with the NHS implementation of being farmed out to local CCG's.

Perhaps it would be a useful way forward for DwME to work with Forward ME to created some sort of clear explanation to CCG's about their legal responsibility to provide scientific evidence based care for pwME as part of getting the guideline locally implemented. I can't see that government is going to decree that all clinicians must follow the guideline. The clue is in the name, it's a guide, not a mandate.
_________________

I hope DwME will focus on their education work, research and working with other organisations on advocacy. But of course it's up to them where they put their energies. I wish them well.

What @Trish says

 

[rvallee]

Is Ryamar American? Because glass ceiling is a common term in North America that most people are aware of. No issues there. Actually the thing I find the least problematic in all this discussion, but maybe it's just an issue of cultural translation.

 

[Trish]

Is Ryamar American? Because glass ceiling is a common term in North America that most people are aware of. No issues there. Actually the thing I find the least problematic in all this discussion, but maybe it's just an issue of cultural translation.

It's very familiar in the UK. But not in whatever sense it appears to mean in the DwME material.

Spoiler: Wikipedia definition and explanation of origin

A glass ceiling is a metaphor used to represent an invisible barrier that prevents a given demographic (typically applied to women) from rising beyond a certain level in a hierarchy.[1]

The metaphor was first coined by feminists in reference to barriers in the careers of high-achieving women.[2][3] In the US, the concept is sometimes extended to refer to obstacles hindering the advancement of minority women, as well as minority men.[2][4] Minority women in white-majority countries often find the most difficulty in "breaking the glass ceiling" because they lie at the intersection of two historically marginalized groups: women and people of color.[5] East Asian and East Asian American news outlets have coined the term "bamboo ceiling" to refer to the obstacles that all East Asian Americans face in advancing their careers.[6][7]

I disagree that it doesn't matter that it's been appropriated to mean something different in the DwME material. And it's clear we don't even agree on what it is meant to mean as it's used in that context.

I think it matters, not specifically because of this single misuse of a term, but as indicative of the whole problem with the stuff being produced by DwME in their 'medico-legal' documents and on Twitter. It's completely unnecessary obfuscation.

Sorry, I wasn't going to post on this thread again. Couldn't resist.

 

[Kitty]

Because glass ceiling is a common term in North America that most people are aware of.

It used to be common in the UK too, but seems to have begun as a fairly specific term referring to obstacles to women achieving senior leadership and board roles. It was expanded to include other minorities, and to cover other situations, but fell out of regular use maybe 20 years ago. It's still current in a way, it just looks a bit dated now.

ETA: Cross-posted with @Trish.

 

[Jonathan Edwards]

It used to be common in the UK too, but seems to have begun as a fairly specific term referring to obstacles to women achieving senior leadership and board roles.

This is a distraction, just as Trish says, but I think the metaphor was in use way before 2014. I wonder if it was hijacked by feminism.

I have just been in a conversation with an eminent US physicist who said he trusted Google (tongue in cheek). A Welsh Nobel Prizewinning physicist replied that this was unwise!

 

[Kitty]

I think the metaphor was in use way before 2014

I'm sure I remember it from the feminism of the late 70s and into the 80s. The tradition it describes is still alive and kicking but some of the barriers are different, and perhaps that's why it seems so dated now.

But yes, in this context a distraction.

 

[Trish]

This is a distraction, just as Trish says, but I think the metaphor was in use way before 2014. I wonder if it was hijacked by feminism.

I don't know where you got 2014 from. The wikipedia article says
'In 1839, French feminist and author George Sand used a similar phrase, une voûte de cristal impénétrable, ...'
And several Americans were credited with using glass ceiling in 1978.

Spoiler: more wikipedia

One person using the term Glass ceiling was Marilyn Loden during a 1978 speech.[16][17][18] According to the April 3, 2015, Wall Street Journal the term glass ceiling was coined in the spring of 1978 by Maryanne Schriber and Katherine Lawrence at Hewlett-Packard. Lawrence outlined the concept at the National Press Club at the national meeting of the Women's Institute for the Freedom of the Press in Washington DC.[19] The ceiling was defined as discriminatory promotion patterns where the written promotional policy is non-discriminatory, but in practice denies promotion to qualified females.

It will be interesting to see how DwME define their use of the term.

 

[TiredSam]

Perhaps they mean a brick wall?

 

[Louie41]

This is true. Unfortunately the group of people who are not used to the language includes the recipients and intended audience of their writings. I would wager that there are only two people on the planet who are used to "the language", and that they are both members of DwME. Some of those offering feedback have a medical or legal background, and know what they are talking about regarding the use of plain language in those fields. I attended a course on use of clear language in legal correspondence as a trainee solicitor in 1989, this is hardly a recent concept, and as far as I'm aware it is not really up for debate. Nobody has time to read things written in obscure language which could be expressed much more clearly, all you are doing when you write like that is ensuring that whatever you've written goes to the bottom of the pile, and stays there. Busy professionals just don't have time. They may have had in the 1960s, but gobbledygook has been out of fashion for a few decades now.

I'm quite sure RR isn't American.

It's too bad DwME seem so closed-minded. The understanding or expertise of the readers of this stuff isn't the issue; it's the writing itself that's weird and obtuse. Every American lawyer is well familiar with medical terms involved in the law. Sheesh!