News from Doctors with ME

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:
https://twitter.com/user/status/1541070018049626113


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/

 

Picking up just one of Dr Hng's tweets:

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:

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

 

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.

 

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.

 

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.

 

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.