David Tuller: Trial By Error: Steve Brine's Troubling Claim in Parliamentary Debate on ME

Excellent as always. For Professor Chew-Graham to not distinguish between "total NHS spend on working age population" versus "total NHS spend", and not appreciate the implications, is either crass incompetence or deliberate deception. Either way it is deeply worrying for someone in her position.

A couple of minor typos @dave30th:

"I have spent the last 3+ examining", presumably you meant "3+ years".

"Steve Brines MP on this e-mail", should be Brine not Brines.

 

Can't let @Andy steal all the glory .

 

Oops! Since it seems those glitches were in the letter itself, I won't correct them on the blog post.

 

Also, for those like me who only learnt this today - the wife of Simon Wessely (See: https://en.wikipedia.org/wiki/Clare_Gerada)

 

There is published guidance on this, for those unsure of the system in England (I'm not sure if it covers all the UK): https://www.ntw.nhs.uk/content/uplo...Pts-DrsMakingDecisions-V04.5-Iss-1-Jan-19.pdf and https://assets.publishing.service.g...attachment_data/file/138296/dh_103653__1_.pdf (I've included the hyperlinks to show where I obtained the information).

 

From David Tuller's:
Trial By Error: Steve Brine’s Troubling Claim in Parliamentary Debate on ME
28 JANUARY 2019 (as per link at start of this thread)

"Overall, this RCGP document endorses the shared decision-making concept. But there are exceptions–among them when the patient has illnesses referred to by the RCGP as “complex psychological problems, such as Chronic Fatigue Syndrome”:

“We would take issue with…the statement that patients who had a choice of therapy were more content than those who wanted a choice but did not receive it is so obvious as to not need stating. Further, they were more content with their therapy–but what were the clinical outcomes? And what of patients with complex psychological problems, such as Chronic Fatigue Syndrome, where a choice of treatment might do more harm than good?”

In other words, the RCGP clearly views ME as a psychiatric or psychological disorder. And the organization singles out people with the illness at the core of METRIC–and last week’s parliamentary debate–as potentially too disturbed or irrational to make their own treatment choices. The apparent justification for suggesting that they might not warrant this fundamental right is that the RCGP has determined that to grant it could be harmful to their health. Does Brine share this view of ME patients? [Paragraph edited after posting; see original paragraph at end of post.]"



Comments from a non-UK professional with decades of experience in the field of service to the mentally challenged, autistic, and persons with schizophrenia:

- this RCGP policy may be operating outside the law

- regarding the question of mental competency, there must be, and is individual assessment for persons in this situation.

- those with Alzheimer's, schizophrenia, and others who are mentally challenged may, and have been assessed as competent to handle their own affairs, and guide their own treatment.


My question - are the laws in the UK such that anyone diagnosed with a mental health condition, or who is otherwise mentally challenged, automatically deemed mentally incompetent, and therefore prevented from choosing, and guiding their own treatment?

Or, is this special privilege just saved for pwME?

It appears there may be very minimal rights for patients of all stripes in the UK.

This is probably too in-depth, but is there any protection at all for people who fall under the eye of the BPSites?

There has to be something, given that we live in the 21st century in the so-called developed world.

However, I understand new regulations and programs coming on stream may erode previous rights.

It appears the system is out of control.

 

Hi, just to clarify--this was not a policy statement about a policy in effect. The document is a response to a proposal or a report from the Department of Health. The offending phrase is an expression of RCGP's opinion--it does not indicate that this is current practice. Although we know that these therapies have been forced on children. And of course refusing them as adults can trigger problems with accessing disability and other benefits.

 

For decades the tobacco industry was untouchable. Until it wasn't, and they are rich as F.

Even the biggest saboteurs can be beaten when you have truth on your side. It just may last a lifetime but hopefully we're at the tail end of this.

 

Thank you @dave30th for the clarification. One gets lost in the official and unofficial, sometimes!

We of course know opinion can become unofficial policy - as in usual practice, even though it contravenes laws.

For example, despite Canadian law stating patients have a right to see and copy their own files, including information from previous practitioners that has informed current physicians, patients may still be advised that past information must be directly requested from previous doctors.

Unfortunately, the RCGP opinion of mental incompetence may influence GPs' treatment of pwME, or at least their own view of their patient.

As if we weren't maligned enough!

 

A damned if you do, and damned if you don't choice.

You can choose to refuse potentially harmful GET, and be denied disability benefits, or choose to do GET and risk further worsening of your ME.

 

Ah yes....keeping it unofficial, and planting the seed of contempt serves to further falsely inform, and incorrectly confirm some physicians' beliefs that pwME are seriously mentally ill, and mentally incompetent. This without having to prove, or apply rigorous/legal testing to this assertion.

 

Thankfully not! From the GMC document on patient consent as linked to above by @Simbindi (p27):

https://www.ntw.nhs.uk/content/uplo...Pts-DrsMakingDecisions-V04.5-Iss-1-Jan-19.pdf

The laws and procedures for assessing whether a patient is capable of making their own treatment decisions are set out in the Mental Capacity Act 2005 and the Adults with Incapacity (Scotland) Act 2000.

From the Mental Capacity Act 2005:

My bolding.

https://www.legislation.gov.uk/ukpga/2005/9/part/1

 

@Snowflake

Thank you.

Despite laws to protect many from being forced into treatments they do not want, pwME must often choose between GET and disability coverage, or refuse GET, and possibly jeopardize disability assistance. The laws don't seem to protect this particular UK community. I understand Australia is the same.

 

I suspect the 'dishonest researchers' were simply kindly supplying what the mandarins of the Blair government asked for in 2000. The new government mostly sees the NHS as a safety net for poor people that needs to be kept cheap so they would not want to rock the boat if someone had found a dodgy way to save money. The irony is that what was supposed to be money saving may have an insatiable appetite for business. But then as long as someone is making a profit ...

'The government' does not exist as a sentient entity. It is just a farmyard where lot of pigs are trotting around their troughs, some popping in and out of the No 10 barn and others not.

If there is fear it is because they are no longer in control of the popular narrative. Ultimately governments cannot ignore the popular narrative - as David Cameron discovered.

 

In theory, the right to express an opinion is limited by the rights of others, like physical integrity, and by crime laws. This is a very fine line, of course, which would have to be faught over in a law court. In practice, I guess, a court might say it's an opinion.

 

The comments in that 2012 document about ME being a "complex psychological problem" are very interesting. They are so far removed from the usual public comment that they might at first be regarded as a mistake. It is however worth looking at the status of the writer of the missive-Professor Amanda Howe. She is, at least according to Wiki, currently Vice-chair of the RCGP and has led on professional development and been chairman of the workforce committee. It would appear that these false illness beliefs about CFS are central to the organisation. It is astonishing that such views should have reached the light of day.

 

@dave30th

So who carries ultimate responsibility in Education Training etc?

http://www.aomrc.org.uk/about-us/

Should not this august body be copied in n'est pas?

I am extracting key info/names/ /movers and shakers within Academy to speed things up.


The Academy of medical Royal Colleges (the Academy) http://www.aomrc.org.uk/

• About Us

• Education and professional development

• MTI

• Quality and Policy

• SUPPORT FOR DOCTORS

• WELSH ACADEMY
  

Who we are

The Academy of medical Royal Colleges (the Academy) is the coordinating body for the UK and Ireland’s 24 medical Royal Colleges and Faculties. (My emphasis) We ensure that patients are safely and properly cared for by setting standards for the way doctors are educated, trained and monitored throughout their careers.

Healthcare is complex and increasingly there are issues where a cross-specialty perspective is needed. It’s our job to ensure this work is done effectively and then acted upon by policy makers, regulators and clinicians.

What we do

The Academy’s role is essentially one of coordination between its member colleges and faculties to help ensure consistency across all the specialities. While there are many official bodies which have oversight over patient care and the way doctors treat patients, the Academy too plays a crucial role in making sure that these standards are maintained and we all get the healthcare we deserve.

Our activities concentrate primarily on producing policy and recommendations to inform healthcare. Much of this work is delivered by the Academy’s long standing committees or through working groups and independent short-life projects.

We do this by focusing on the following key areas:

• Education & Practice
• Quality & Policy Delivery

​

(My emphasis) The work of the Academy is underpinned by effective representation and engagement with all its stakeholders, from the patient in a ward to the Secretary of State for Health. Through these strong relationships we are able, not only to create opportunities to promote our own priorities for healthcare, but also to be well placed to advise and carry out work on behalf others.

 

Wonderful blog post. I think this shows how important you still are to the ME-community.

Just one minor remark:

I doubt this is true. The Vercoulen model used to include somatic attributions but has ditched this, since it proved to be irrelevant in their studies. Don't think the PACE or FINE trial found physical illness attributions to be important.