Thread by @RRRR4tothe4

1/ Long delayed thread on Javid’s resignation + achieving root+branch @DHSCgovuk change, without perpetuating regulatory failure with unnecessary expendable gaps

2/ Unacceptable past conduct and misinformation versus the @DoctorsWithME professional association over the past 18 months and their impact on public health is also addressed

#MECFS #LongCovid

3/ This loooong + frank thread is split into two- but a line in the sand for

a) future assessments of how implementation goes over the years (hopefully flawlessly + without foreseeable gaps) and

b) for the record regarding irresponsible behaviour (in the second thread)

4/ Before this, thank you to everyone who reached out with appreciation+support over the past 2 months for the hardworking people in #DwME. The kindness has been moving. This hardworking professional coalition is pushing for real, practical change and deserves every word.

5/ Our work has continued regardless of Javid’s resignation. But his keen interest, departure + replacement shine a light on an important point. Political or administrative will is not enough. All ppl involved are temporary - especially a SecofState - and their reach is limited

6/ It's not prudent to trade the enforcement of existing rules, in exchange for the support of fleeting political or administrative will. This risk also applies to sympathetic civservants

(direct link re that risk)

7/ A rosy DHSC process that leaves patient-reps glowing can still leave many pwME abandoned in many struggles - if there are slight hints of optionalities for frontline change. Full stop. Ignoring this is unnecessarily naive

(direct re optionality)

8/ Without mandatory rules, DHSC’s goodwill is dilutable across management structures of the UK's largest employer, the NHS.

9/ Those NHS + other public servants who endemically break rules when ME is play, are supported by senior contra-scientific campaigners. Proactively undermining scientists from gilded Colleges - whose Trustees should be terrified by their proactive lack of numeracy + implications

10/ We can only hope that patients displeased by semantics can raise their eyes towards the bigger prize. Consistent, root and branch, frontline change, which removes optionality and addresses rulebreaking.

11/ The broad strokes of what is necessary for this (or any other similar processes globally) requires a whole 2:56secs.

12/ (There is also a mapping process behind the scenes, to connect existing unenforced statutory, regulatory, policy + professional rules to these. Which is why it requires no new legislation to empower simplified, legally sustainable rights and obligations)

13/ Much is happening in the background. Yet disinterest in this topic from key parts of the patient community has been deafening. The lack of ANY exploration remains, frankly, surreal

14/ Patients on the raw end of obstinacy or ignorance several years from now will notice how practically empowered they are with usable rights/HCP obligations, or where they are not

15/ There was a longstanding offer to ForwardME + global figures that define the ME narrative to explain how this is implementable in practice, predating DHSC. Ironically, every passing day makes this infeasible. Discussing now, on demand under time pressure, has obvious probs

16/ I wish the DHSC process all the success possible - we are directly involved. With many amazing ppl involved

But these professionals cannot totally compensate for the lack of employer-relevant pressure from patient groups (HCPs + social workers have bosses)

17/ 'Patient narrative' doesn't condemn rampant rulebreaking. Or that there is a scientific consensus of legal consequence. Or that it's ignored with illiterate disdain

All points that are basic to a long term policy agenda

(direct re sci consensus)

18/ "We need more PR" goes the frequent call, but PRing what? It is possible to use PR well and loudly, but fail to make root and branch change (complete with the firepower to make it seem successful)

19/ Saying there are sad/poor/malign/incompetent/uneducated people doesn’t drive change by itself (there's always enough other pain in the press to drown it, let alone during an economic catastrophe).

(direct link re PR)

20/ In reality, management agendas depend on professional or organisational self interest - prioritising how they manage local or national organisational decisions, risks and liabilities.

21/ Any final DHSC process that leaves any optionality on the table is blind to that boring management reality of how organisations work. Management under pressure mixes:

a) the minimum possible to meet your objectives (efficiency)
b) over egging avoidance of what terrifies you.

22/ It is not possible to merely say "I disagree" to such an approach. It is not a question of theory, but about what we actually know works. And how large heavily regulated orgs have to manage themselves. Full stop.

23/ Normal standards in ANY field hold an employee to account, requiring them not to break law, contracts or standards. On pain of discipline, dismissal or even imprisonment

<These are not controversial statements in any other field>

24/ Professionals are employed by organisations to whom they are accountable

Even when victims feel uncomfortable

25/ The fact that a strategic discussion asserting rights is alien to patient discourse is a community indictment (which is not saying ppl don't complain).

26/ This void + lack of interest would not be accepted by gender, racial + sexual groups, if their collective rights were irrelevant in daily life

27/ In ME land, rule breaking is endemic. And yet avoiding discussion of uncomfortable rulebreaking is often seen as tactically polite or professional. Some describe this misconception as irrelevantly submissive, missing the point.

28/ The point is that not addressing the truth of rampant rulebreaking head-on is sufficiently unprofessional that it would get you fired in any other field. It fails to understand how policy formulation, implementation and policing happens in practice. Even in Britain.

29/ Reality and the criteria for success for all patients don't care which stereotypes you are trying to avoid. Neither does posterity.

30/ You shouldn’t <ask> for anything that you can already show is yours - optionality that did not exist

That's not being polite or professional, it's just bad negotiation (or an expendable bargaining chip)

31/ Assertion + requiring explanation either wins, or opens practical paths with preloaded ammunition

Otherwise you leave people with the impression that even you think your rights are optional

32/ This ties into a <classic> problem when defining the policy agenda for policymakers <in any field>. Warm human interactions can promote OR undermine objectives. Human relationships are not always win:win and can come at a cost for one group

33/ Less experienced lobbyists thus commonly dilute the setting of an unavoidable policy agenda.

How?

Being human leads to affinity + empathy. Feeling disempowered does not help - especially when enjoying the warm glow of a powerbroker's relationship.

34/ Timely self awareness in such a situation is harder than it sounds, due to common cognitive biases that can perpetuate regulatory failure and capture. While not the same, the mechanisms are the same as the basis for Stockholm syndrome

35/ Re NICE 2021, merely pushing guideline 'adoption' alone or making education mandatory are insufficient, accepting collateral damage and lives left behind. Without need

Sure, adoption + education are absolutely part of change, but only one part

36/ Regulatory failure is so broad that it has to be addressed in the conventional regulatory compliance enforcement terms that runs orgs + terminates contracts

37/ (Beware the term ‘compliant documentation’. It is a coincidence of words, merely about NHS documents contradicting guidelines or not

That is NOT the same as enforcing compliance to CQC, GMC or statutory rules. Ending rulebreakers' careers in extremis)

38/ As per the presentation, there is a large % of medics who refute even the 2007 document. Guideline enforcement whack-a-mole letters play an important part, but are irrelevant to the belief systems of obstinately ignorant HCPs

39/ It's worth calling out Charles Shepherd's consistently great work. His limitation is simple - he's one man. We can't clone him or others for every personal injustice. Even the clones would need to be fed,clothed + housed. Such letter writing isn't scalable, limiting potential

40/ In contrast, NHS, LA + profassoc orgs do have their own enforcement frameworks + enforcers, locally and nationally. But these machines have no idea of where existing rules are failing pwME - which our approach + implementation steps would address

41/ Pointing out the truly obvious, adoption of guidelines can also only achieve the guideline (apart from being ignoreable)

The guidelines do not address the myriad of rule breaking that occurs, which range from the abusive to the absurd

42/ It's worth highlighting that GroupLitigation/ClassAction suits shld be pursued where appropriate. Justice is lacking for pwME

But they are not an alternative to addressing managers as employers, organisational change realities and rule breaking norms

43/ The judicial route is less immediately focused on organisational change, takes a long time, has higher requirements, with impacts that are limited to the case at hand, but with less certainty of success

44/ (Comments on the limited relevance of legal opinions are at the end of this thread)

45/ Not addressing the enforcement gap or reimposing normal rule following behaviour also has broader implications for the #MECFS Venn diagram, also touching on how #EDS, #LongCovid, #MCAS, #Fibro, etc. are dealt with clinically and administratively

46/ So, here's an example of GP discourse that should not need to happen:

Patient: I want X

GP: No

P: Shares charity PDFs, for years

GP: Still no

47/ P: I have a right to X. To not supply it is a breach of xyz policy and my representative has shown that denying it is unsustainable for your employer on HRA, EA, PSED, CQC + GMC bases, and you on abc bases

GP: I see - I wish that I could help but computer says no

48/ P: Irrelevant + untrue, but here's an FOIA req regarding your systems to confirm your claim

GP: We have no way of accounting for X to be reimbursed, so still no

P: Here's a conversation with the head of the Whitehall unit responsible, explaining why that's not true

49/ GP: My GP Green Book says no

P: Untrue, it literally says the opposite

GP: Continues to express mistruths in writing

P: Escalates to legal officer, highlighting entire sequence of events, showing no corner to hide, resulting in root and branch change

50/ Above is a hypothetical version of typical pwME GP exchange. Years of PDF sharing, ignored by obstinacy. Replaced by a few months of removing optionality. Asserting rights, obligations, behaviour witnessed + the consequences for the org

Resulting in unavoidable change

51/ It's worth noting that such an exchange is nothing compared to the mistruths or abuses witnessed by some pwME, often with the audacity of complete record keeping

But why should any of it be necessary? Let alone under pressure in VsevereME or A&E contexts.

52/ It's because the logical layers between a right/oblig to X and the actual rules that provide them require painful navigation

Medics' contra-scientific belief systems peculiar to this field stand in the way, sometimes until it's fatally too late

53/ Think about the clarity that an NHS employer could benefit from in that context, in advance. They need clearly defined rights + obligations that are not optional. And the professional, policy, regulatory and legal grounds

Competent bosses don't play fast + loose for no gain

54/ It is absolutely critical to note that, while guidelines in general are advisory, in practice they are not "just advisory" in the case of #MECFS

This is critical to understand and HCP employers must be under no illusions

55/ The "advisory" nature of guidelines merely accommodates grey areas or other scientifically justifiable approaches (maybe a patient prefers a higher risk and reward approach)

But a medic has never been free to do absolutely ANYTHING they wish.

56/ Plus, medics DO NOT define medical law (medical testimony can obscure this fact)

Law now accepts that medical practices themselves can be legally indefensible on the grounds of insufficient of logic. The shallow ‘gloss’ of mere professional norms is not a defence:

57/ “But if, in a rare case, it can be demonstrated that the professional opinion is not capable of withstanding logical analysis, the judge is entitled to hold that the body of opinion is not reasonable or responsible”

(direct link re Bolitho Gloss)

58/ Liddell et al (2022) out of Uni of Cambridge Faculty of Law + School of Medicine provide a nice overview of the law’s catchup with reality

doi.org/10.1093/medlaw…

59/ This all matters because the current actual choice in ME guideline adoption is not between two legally sustainable options:

60/ - Evidence based practices, rooted in scientific consensus (2021 Guidelines just one example)
vs
- Medical norms founded on research standards that dilute the definition of science, to arrive at absolute contradictions of the scientific consensus

61/ Low standards defining the latter are not legally sustainable + are laughable in any other numerate field. Medics’ belief systems contradict scientific consensus - showing the limits of best practice being just ‘advisory’

(direct re sci consensus)

62/ That is a devastating indictment of extreme consequence. The evidence also shows us that a manager cannot reasonably assume that a clinician can safely or lawfully engage a pwME without unnecessary risk generation.

63/ Even informed consent criteria becomes an impossible assumption, because the medic must be assumed uneducated

The above legal, policy + public health picture is grave.

65/ Having some legal background + having commissioned lawyers for policy purposes, I must remake some important general points that ppl often miss: normal legal advice can be circularly flawed when an entire topic is nonsensically broken.

66/ Because lawyers + application of law are often limited by the very same topic, meaning legal advice is often not the overriding factor when driving change

Why?

67/ Lawyers are not entirely the pure logicians of their image, just as medics are not the practitioners of science they always think they are (e.g. failure of medical ME norms)

68/ Lawyers must weigh the probability of conventional success versus client cost, which is conditioned by more than raw law. A lawyer’s judgement is thus limited by how law is limited by culture + norms. Anything else risks a professional negligence claim against the lawyer.

69/ These determine past application of law + how easily a lawyer can be found to force law into a topic. Most lawyers thus veer away from what has not already been won elsewhere

This is a circular problem, if the cultural context + norms are faulty

70/ In sum, lawyers do not always apply internal logic to the terminal conclusion required for real change in broken systems. This is a normative process i.e. setting norms is important

71/ Conventional legal advice is implicitly correct that culture informs processes, however. Until it is broken under the weight of internal contradictions

History is littered with horrors that were legally indefensible, if terminal logic were pushed.

72/ Injustices perpetuated by cultural decisions of where + how to apply law. Many limits on + moral crimes against minorities or women wouldn’t have been allowed under contemporary laws. But were sanctified culturally, by public servants + courts who were let off the hook

73/ Regardless of this description of law and lawyers, many people also forget that organisational management and self interest is not about doing what lawyers prescribe

74/ Management define their own needs and best practice. With influenceable norms and direct instructions that can be given. Which is not merely about legal advice alone.

75/ In short, the postviral disease professional + patient communities need to ask for very few things. But we must and can <demand> many. Whilst demanding written explanations, where contra-scientific obstinacy arises.

76/ We must insist that obstinate replies are forced to address terms relevant to ME science, their employer’s reputation + applicable rules

77/ Demanding such replies is materially reasonable, due to the context of unnecessary risk generation + regulatory failure

Even an insistent lack of reply is useful + documentary of failure

78/ Deprioritising patients’ rights + HCP’s obligations would continue the betrayal of science, literacy, professional standards, ethics + human decency. And even law. Patient bodies must not perpetuate any optionality, whether due to ignorance or as an implicit bargaining chip.

79/ Posterity will simplify such gaps into continued injustices + horrors that are then self-made by the community, either in part or in whole

Or patients can push hard for their rights too…

(especially with a new SecofState to be announced v shortly)

80/ A little background regarding me:

81/ Apologies in advance, I don't expect to be able to answer to replies to this thread:

82/ Link to the second thread, following this first:

Thread 1 unrolled into a single webpage here:

threadreaderapp.com/thread/1566382…