News from Doctors with ME

Corporate bullsh** Bingo as delivered by BT management.
Plain speaking with always win out!

 

Honestly.. I am a communications professional. This is not a normal way to present ideas. He says on Twitter:
https://twitter.com/user/status/1540071872892657666


So.. they’re representing us, again making patients look crazy.

 

Communicating at the highest levels and yet:

 

I wonder to what extent the 17 odd "Honorary Fellows" (a role I was offered last year but declined to accept) are aware of the publicly expressed concerns about this group's communication style and content?

Several of the "Honorary Fellows" and most of the Board of Governance (Muirhead, Geraghty and Ramyar) are members of S4ME but are choosing not to engage in this thread.

 

https://twitter.com/user/status/1540259310843863040


https://twitter.com/user/status/1540264072603750401


https://twitter.com/user/status/1540266492599599106

 

Below is my mail exchange with Dr Hng about the issues with DwME’s communications (also sent to Drs Geraghty & Muirhead). To summarize, Dr Hng says that patients should read only what they are able to understand — such as the note for GPs about the new NICE guideline — and skip the rest. I find this unacceptable.

My first mail & addendum (1)

Dr Hng’s reply (2)

My reply & addendum (3)

Dr Hng’s reply (4)

My reply & addendum (5)

Dr Hng’s reply (6)

My reply (7)

Edit:

Dr Hng’s reply (8)

My reply (9)

Further edit:

Dr Hng’s final reply (10)

My final reply (11)

Addendum to my final mail, with examples (12)

The last 2 mails can be found here: https://www.s4me.info/threads/news-from-doctors-with-me.21251/page-10#post-425415

 

Not an acceptable response.

 

This is very insulting.

They are clearly on board with the communications then, so not much else to be done.

 

I have added Dr Hng’s final reply and my own to my post above (mails 6 & 7). It feels particularly egregious to be accused of cyber bullying.

Edit: I have sent the following final mail. I will not be communicating with Dr Hng further.

 

I think this goes beyond the language used. As I pointed out earlier in this thread, it seems Richard is using DwME to indulge his myriad personal interests, which seem to span law, corporate management, computing, cybersecurity. I'm sure he has lots to bring to the table—perhaps too much. It seems that the other DwME leaders are not willing to accept this.

 

Can a patient 'cyber bully' an organisation?

To me it reads more like 'go away or I'll let the dogs out', or 'shut up'.

Didn't even bother to go through 'vexatious' but went straight to 'I don't like what you're saying so you're a bully'.

Really quite 'bad'.

 

Mmmm. Reframing the raising of legitimate concerns as potential "cyber bullying" is not an acceptable response, either.
Where have we seen this before?

I have lost all confidence in this group's ability to function effectively and I am so glad I decided not to have my name added as an "Honorary Fellow" because after these responses from Dr Hng, I would have stood down (had I not done so already).

 

I am also very concerned about the communication style of DwME.

It is not the case that DwME's communications only come across as impenetrable and florid to patients with cognitive dysfunction as regards reading. I can read quite dense material without trouble much of the time these days, but the DwME communications require reading and very close re-reading to extract their actual meaning. Business-speak is just not appropriate or necessary.


And Yes, reframing the raising of legitimate concerns as potential "cyber bullying" is deeply worrying. If an org proposes to speak for ME sufferers they have to have social media platforms on which patients can respond to them, communicate with them, and yes, raise concerns. Pre-emptively framing patients who want to raise concerns as potential "cyberbullies" is horrible. And unprofessional.

 

This is a fair summary, @Trish. I repeatedly tried to explain how your second point can be damageable to DwME’s professional work, and insisted on how your third point is intolerable, but I wasn’t heard.

 

NO you are correct on context and that being what most people think of it as. I guess the picture it is drawing in the phrase is that of seeing above a certain stage but not being able to get there

I think the more common types of phrase in this context involve terms like 'with teeth'. Because it is about what they can do, and how they might be limited in it rather than 'position'.

Analogistic words/phrases in business tend to be to make things more straightforward to communicate and reduce confusion, and get a specific concept across in few words: 'does what it says on the tin', 'segmentation', 'failure demand', 'mass customisation'. It's why I don't know whether the context demands convoluted language, but it's not normal business-speak in general - I love the business literature for its focus on ease of reading - half your time on essay-writing needed to be working out how to get it across, edit it down to simplicity etc. They don't have the privilege of having that time/energy (EDIT so I give grace on that basis to that being a cause rather than it being intended necessarily).

I feel for them, because the issue here is too much to bite off in too short a time. It's strange for example we have not even managed to do a good job of describing the 'stigma', where and how it occurs and mapping that: how it actually operates. What the causes are. In many similar situations that would be something they would be able to 'go from'. There are all sorts of similar bits.

They also haven't had the time to do a strategic 'stand back from the post-it board' to see whether there are better ways of tackling what are big issues needing moves that don't pull their punches. SO I can see why they've grabbed a model and worked it through systemically ... I just don't know whether they've thought about the best way to 'sell' or make changes 'work through naturally' (it might be right? I just haven't had time to think on it). We are really talking about a few massive things: culture change being one of those massive nuts affecting 'each part' of the problem/solution.

 

Am I right in thinking that it is not abnormal to have a professional team in with you to work out what you want to say? EDITED TO ADD: Actually the better-cultured set-ups actually value the input of professionals who can help with defining what is possible in a timeframe when project managing, and actually help with brainstorming-->end output etc. rather than seen as someone magicking the impossible when they are placed at the end of the chain/minionesque (so to speak). The involvement of the right people at the right points and sign-offs are pretty vital

e.g. Non-ME head-honchos have executive officers who write/draft speeches (because they are in all the meetings they speak at, taking instruction and doing all the research they read summaries of) which are then edited and signed off. Websites are done by specialists who work to get briefs for how they want it to come across etc.

They are trying to redo a whole website at the same time etc. yet don't seem to have teams involved

When you've got ME it would seem to be even more essential that you build up these working relationships in order you've managed the sustainability of what you are doing, as well as not trying to learn these specialist skills from scratch in the middle of a peak work-time?

 

I have been told that Dr Hng has reached out to people who know me, asking who I am. So much for cyber bullying.

 

And even that could have been written in simpler language.

With regard to the aforementioned disquietude regarding the appropriateness or otherwise of the disseminations published in the name the group under discussion, I would respectfully propound the advisability of exercising the optionality of giving due consideration to the mandates for wordsmiths as posited by George Orwell in his esteemed disquisition Politics and the English Language:

“i. Never use a metaphor, simile, or other figure of speech which you are used to seeing in print.

ii. Never use a long word where a short one will do.

iii. If it is possible to cut a word out, always cut it out.

iv. Never use the passive where you can use the active.

v. Never use a foreign phrase, a scientific word, or a jargon word if you can think of an everyday English equivalent.

vi. Break any of these rules sooner than say anything outright barbarous.”


Despite my criticism, I would also like to emphasise that I have a great deal of respect for most of the members of DwME. I just wish that the group would improve its communications.