United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

'Never Events policy and framework
Revised January 2018

https://www.england.nhs.uk/wp-conte...d-Never-Events-policy-and-framework-FINAL.pdf


3.1 'Never Events are defined as Serious Incidents that are wholly preventable because guidance or safety recommendations that provide strong systemic protective barriers are available at a national level and should have been implemented by all healthcare providers.


Strong systemic protective barriers are defined as barriers that must be successful, reliable and comprehensive safeguards or remedies – for example, a uniquely designed connector that stops a medicine being given by the wrong route. The importance, rationale and good practice use of relevant barriers should be fully understood by and robustly sustained throughout the system, from suppliers, procurers, requisitioners, training units to frontline staff.'


3.2 'The Never Events policy and framework are designed to provide healthcare workers, clinicians, managers, boards and accountable officers with clarity on their responsibilities and on the principles of Never Events. In particular, these people should know what they are expected to do to prevent Never Events and how they must respond if they occur, including how they report a Never Event.'


3.3 'Never Events may highlight potential weaknesses in how an organisation manages fundamental safety processes and so this policy and framework provide the NHS with an essential lever for improving patient safety.'


3,4 NHS Improvement’s vision of high quality, compassionate and constantly improving healthcare requires us to nurture the necessary culture and conditions, including openness and transparency, evidence-based decisionmaking and a commitment to lifelong learning. As Don Berwick noted: “…standards, regulations and enforcement have a place in the pursuit of quality, but they pale in potential compared to the power of pervasive and constant learning.”



3.5 The Never Events policy and framework support our vision by requiring honesty, accountability and learning in response to a group of incidents that can be prevented if accepted practice (including available preventative measures) has been implemented.


3.6 In this context, it is important that when a Never Event occurs, regardless of the outcome, the problems in care are identified and analysed through full investigation using a systems-based investigation method (such as root cause analysis – RCA) to understand how and why they occurred (from a systems perspective), as described in the Serious Incident framework. This will mean effective and targeted action can be taken to prevent recurrence.'


3.7 Supporting staff to recognise Never Events is essential so that the opportunity to investigate, learn and improve can be identified in a timely way before vital information is lost.

.

 

Thanks, I'm too exhausted to explain at the moment.

 

The 'watchdog' of this vision is the CQC and the Health and Safety Act 2008 (Regulated Activities) Regulations 2014 is just one route and S.20 is the 'Duty of candour' legally requiring honesty and accountability.

 

https://twitter.com/user/status/1781307419043238070



Etta Loveday
@EttaLovedayME

Update about Millie: Petition https://change.org/p/save-millie-s-life-royal-lancaster-infirmary-must-stop-causing-millie-harm… Fundraiser https://justgiving.com/crowdfunding/bake-mecfs-formillie… #BringMillieHome #MilliesevereME #SevereME #pwME #saveMillie #DontLetMEDie

2:02 PM · Apr 19, 2024

 

So they continue to detain her but without a plan of what they're going to do to treat her?! the whole thing is an abomination.

 

From what I've seen, they're excusing it on simply rejecting the diagnosis. No diagnosis, no need to follow the guideline. Those are definitely not the droids you are looking for.

I saw a comment from the hospital, reported by the family IIRC, saying that the guideline doesn't apply at the hospital. And on a TV report they mentioned that they follow the guideline, I guess just not the ME guideline, which as it appears can be done by simply rejecting the diagnosis.

Unfortunately, all systems of rules are just words somewhere, it's execution and enforcement that matter, and that can be entirely arbitrary because rules that aren't flexible to allow this are usually ineffective and ignored. All rules are made-up, some more than others.

 

It struck me today that the role of these guidelines may be greater than we (or I) have realised.

I rather suspect that until the 2007 Guideline for Chronic Fatigue Syndrome (with a nod to ME if you like to keep people happy) that there was no clear formal recognition of the existence of the diagnosis relevant to legal issues. Maybe there were chapters in books but a NICE Guideline sort of makes a disease real - and allows people to justify their clinics.

So the outrage when CFS suddenly disappeared, to be replaced by a new disease with new criteria called ME/CFS was not just a minor issue. The people who thought they had invented and cornered the market found their franchise was rescinded.

And the existence of a Guideline for ME/CFS is, I suspect, of considerable legal significance in these cases. If a patient has a diagnosis of ME/CFS, treating them differently, according to some other unspecified, ill-defined or not communicated diagnosis without full consent is likely to be against the law.

I don't have any formal authority to obtain more detailed information on these cases but it is increasingly relevant to what I am trying to do to produce some sort of useful document.

 

You are right the new NICE Guidelines ‘ rescinded their franchise’ and opened them up to scrutiny and competition in unexpected ways from both patients and their Peers in the caring Professions. The GMC Guidelines on Professionals Health Practice states:

‘To maintain your licence to practise, you must demonstrate, through the revalidation process, that you work in line with the principles and values set out in this guidance. Only serious or persistent failure to follow our guidance that poses a risk to patient safety or public trust in doctors will put your registration at risk.’

It is very arguable that persistent ignoring of the best practice guidance in the new NICE ME/CFS guidance, is evidence of Professionals not responding to the concerns raised about previous medical practices in respect to the treatment of ME/CFS and in consequence poses a threat to patient safety and trust in Doctors. As does inventing spurious other diagnostic labels around the symptom profile. If such concerns were raised then the GMC would then have to consider ‘Fitness to Practice by:

1. How the medical professional responded to the concern, including evidence of insight and remediation.

Once we’ve (the GMC) assessed the risk, we’ll need to consider if regulatory action may be required in response to the concern.

However my past experience is that the Authorities are not keen to tackle this branch of Medicine and have let them get away with exceptionally poor medical practice and science for decades. I suspect because the resultant mess would just be too big for the Profession as a whole.

Marginalising them by making their Peers and patients aware of what good medical practice and science in ME/CFS looks like, is paying dividends if only slowly.

The new NICE Guidelines were hard won and help Heath Care Professionals by giving them the choice to give patients the better service it sets out. They also allow patients to ask health care providers to provide that better care.

 

I had noticed in the reporting somewhere it said something like “it is claimed she has ME/CFS” can’t remember where, might do a little review. It struck me when reading “aha, this is how they’re going to get around the guidelines, pretend we don’t actually have ME”.

There is always the option to say it’s not ME, or yes maybe ME but the main issue is Mental Health, ED, Oppositional Defiance Disorder, whatever, and so we’re doing the right thing by the side-diagnosis.

Edit to add
And, the Equalities Act 2010 requires that “reasonable adjustments” should be made. It doesn’t require a diagnosis, just that the symptoms have, or will, last 12 months and impact day-to-day activity. On the basis of PEM, Noise/Light sensitivity I’d be raising a complaint that the hospital refused RA’s.
https://www.scope.org.uk/advice-and...reasonable-adjustments-and-making-complaints/

 

Something the updated guidelines specifically mention:

Although I doubt this has much legal weight, it's still stunning to find this in any health care guideline. Ignoring the updated guideline only emphasizes the point further.

 

So are the NHS able to override and/or disregard a private diagnosis?

 

I have no knowledge. However, if you have a formal diagnosis from a doctor then I assume that it is relevant - presumably the NHS doctor would be wise to at least record why they consider the other doctor's diagnosis [ME/CFS] doesn't apply. Another form of words for the same thing - the ME/CFS diagnosis stands unless it is demonstrably wrong.
I do wonder how "they [NHS doctor] are getting away with" not providing adequate nutrition - at the very least I'd expect the coroner to challenge that!

 

Is the coroner involved? There has not been a death.

 

Maeve Boothby-O'Neill ?

 

Dr William Weir (private ME Doctor) was a Consultant in Infectious Diseases at the Royal Free Hospital, London:

"During my tenure as a consultant in Infectious and Tropical Disease at the Royal Free Hospital in London, I began seeing patients whose acute infection (often serious, such as malaria or meningitis) had been effectively treated, but who remained unwell with what is now recognised as ME/CFS."
https://meassociation.org.uk/2021/1...e-and-the-nice-clinical-guideline-for-me-cfs/



Dr Nigel Speight (private ME Doctor):

From 1982, for the next 25 years, Dr Speight was a Consultant in Paediactric Medicine in Durham.



So both of these private ME Specialists are former NHS Consultants in their respective medical spheres.


It is surely petty and evasive to insist that these ME Specialists cannot be relied on/listened to because they are *Currently* not working in the NHS, when they both have considerable history as Consultants working *In The NHS* !!

.

 

Oh, but a coroner can’t do something for Millie McAnish who is in hospital now, in a different area. Maeve’s inquest is not until July in any case, so any outcome from that Coroner will take time.

 

This is the danger with a “diagnosis of exclusion”. You can later overturn it, by arguing it was wrong as the true diagnosis is psychological.

 

I've highlighted this this morning referening the CMO 2002 United Kingdom: Science Media Centre (including Fiona Fox)

• Here's the parliamentary brief which set up the review Chronic Fatigue Syndrome/ME (parliament.uk) Research briefing 1998

"Summary of main points This paper discusses the controversy surrounding chronic fatigue syndrome/ME.

This is a clinically diagnosed condition with a variety of symptoms, prominently chronic disabling fatigue which is made worse by physical or mental exertion. Other symptoms include impairment of short term memory and concentration, sleep disturbance, muscle and joint pain and a profound malaise. The illness has a long history, but in spite of this the cause and pathology of the syndrome remain undetermined, generating much debate in scientific literature. There may, in fact, be a variety of different causes for the syndrome which involve a complex interplay of factors.

Researchers are currently examining a range of factors which may play a part in triggering the illness or perpetuating symptoms. These include virus infection, immunological disturbances, changes in muscle energy production, and brain dysfunction (changes in hormones, chemical transmitters and blood flow). Psychological and social factors that may play a part in predisposition to and maintenance of ill health and disability in some cases are also being considered. Uncertainty about the cause of the condition and effective treatment leads to frustration amongst adult and child patients who may suffer debilitating ill health over a number of years. Patient groups are dismayed by misunderstandings and prejudice which they believe surround the illness and have engendered a climate of disbelief which adds to the distress experienced by the sufferer. Difficulties may arise in obtaining appropriate schooling and disability benefits. However, there is now a consensus of opinion that CFS/ME is a definite clinical condition.

Several reports issued since 1994 have raised the profile of the issue and have informed the debate. Differing emphasis on the physiological and psychological aspects of the condition have given rise to controversy. The 1996 report of the Royal Colleges1 laid considerable emphasis on psychological factors which may influence the illness and this gave rise to strong criticisms from some commentators. The Department of Health has set up a working group on CFS/ME which will aim to promote a better understanding of the illness, to produce advice and information on aspects of clinical management, and to set out the evidence on which this information is based.

1 Chronic fatigue syndrome. Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners October 1996/CR54, Revised 1997"​

• CMO-Report-2002.pdf (meresearch.org.uk)

Sir Liam Donaldson was CMO when the report was published.

Dr William Weir and Dr Charles Shepherd were involved as was Wessely.​

• Gibson Inquiry 2006 Invest in ME - Gibson inquiry into ME

Dr Ian Gibson MP (Chair) Dr Richard Taylor MP (Vice-Chair) Ms Ann Cryer MP (Secretary) Rt Hon Michael Meacher MP Dr Des Turner MP Mr David Taylor MP Lord Turnberg The Countess of Mar Baroness Cumberlege​

• Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (investinme.org) NICE 2007

• Revised NICE Guideline 2021 Overview | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE

An infrequently quoted part of this Guideline is in the Overview:

"All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.

Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties."

When reading these extensive documents together a clear picture emerges and a question arises in my mind:

What in the 'national priorities for funding and developing services' is allowing clear cases of severe ME/CFS to be repeatedly and consistently abused in this way?

ETA:

World Alliance for Patient Safety (who.int)
Sir Liam Donaldson - “To err is human, to cover up is unforgivable, and to fail to learn is inexcusable.”

ETC:

Dr Nigel Speight was also involved in the CMO report 2002.