Guidance for commissioners of services for people with medically unexplained symptoms - 2017

One of the many reasons I have opted out of the SCR databases (having seen my notes, although at present I think my SCR only contains details of allergies etc, which I did get updated):
https://digital.nhs.uk/summary-care-records/patients

 

Thank you @Tab Hoarder , much appreciated. @Inara I would only intend to post on my own Facebook wall and let natural osmosis do the rest so I won't be able to post a link sorry.

 

Worth looking at page 17 of the JCPMH Guidance https://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf under 'A TRANSPARENCY AND DATA REVOLUTION'. Maybe red page spells danger?

 

I would never accept that a doctor/a GP is allowed to have short lists of my medical issues. Easily misused.

 

I was horrified at the current medical history summary (using the old read-codes and don't imagine the new ones will be any better) as not only was it inaccurate (a number of incorrect entries/dates) but things that were flagged up about 'Family medical history' related to medical issues that were not even directly applicable to me.

My 16 year+ illness with M.E. only appeared half way thro the list as a single entry of CFS in 2001. It might just have well have been an entry for a chest infection (ie a one off occurrence).

The other thing is that they plan to make the SCRs available to outside agencies, eg DWP...........need I say more.

 

Luckier than you in that I got sick in my mid forties, but after 25 years and now age 69 I don't expect to see changes for the better in my lifetime. I've been very lucky with my GPs though, for which I am very grateful. They have never refused to look into new symptoms. This is something that I think many GPs in UK refuse to do from what I read on the net. They have always been an unusual practice, had a few bad years when a private firm stepped in, but are now back to as good as they were before under new management.

 

Got sick at 9 now almost 60..ditto. Still waiting to start living.

 

Somebody I know was recently struggling with anxiety and went to their GP for help. The GP recommended that they go on the IAPT programme, but when they accessed the registration forms they were dismayed to find that a DWP assessment form was lined up for them to complete as part of the registration process. This person is not on benefits, but if they had been would any other specialty ask you to complete a DWP form before they saw you?

What does that say about their so-called ‘parity of esteem for mental health?’

I’m glad to say that this person was disgusted and did not sign up.

 

Here is another post from my anonymous advocate. This time looking at the contemptuous way some doctors view their 'MUS' patients and how, using a particular quote, MUS patients have been presumably deliberately marginalised by those propagating the 'MUS' myth. The quote in question is this: "
‘Some make your stomach churn when they come in…very nervous. They make it very clear they are taking charge; and they do, they take charge, and there is nothing you can do.’ (GP)

- quote from this study- https://academic.oup.com/fampra/article/19/2/178/490943


**********************

(by anonymous advocate)

JCPMH - HIGHLY OFFENSIVE QUOTE


On page 9 of the JCPMH Guidance document - https://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf there is a passage which talks about the negative impact that MUS patients have on their GPs. A reference given for this is a 2002 study - https://academic.oup.com/fampra/article/19/2/178/490943- co-authored by the co-chair of the Guidance, Professor Chew-Graham. In this study I discovered quite an offensive quote from a GP talking about their MUS patients – the fourth quote under ‘Results’. I was surprised that any academic would include this quote in a research paper, but I then discovered that Professor Chew-Graham had used the same offensive ‘stomach churn’ quote on this 2017 blog - http://primarycarekeele.blogspot.co.uk/2017/02/mus-guidelines.html . (So had she been brooding about this quote for quite some time?)

If that wasn’t astonishing enough, I recently discovered this online JCPMH document - Commissioning guidance for Medically Unexplained Symptoms (MUS) , dated 21st October 2016, which predates the publication of the JCMPH Guidance by several months. The document appears to be a presentation for a healthcare conference, this MUS conference - http://www.healthcareconferencesuk.co.uk/news/medically-unexplained-symptoms – which was held on the 21st October 2016.

On page 10 of this presentation we are confronted by the same offensive quote. The JCPMH Guidance co-chairs, Simon Heyland and Carolyn Chew-Graham, appear to have thought it acceptable to use this quote by a single GP to represent how clinicians in general can find consultations challenging. They have presented this prejudiced view to a room full of health professionals at a dedicated MUS conference as an example of the impact that MUS patients have on their GPs. If these derogatory comments were about any other minority or patient group they would surely be hauled over the coals for this.

You do have to wonder who intervened to stop this quote being displayed in the final JCPMH Guidance document.

(Apologies if this information has already been posted here. NB The conference document was posted in January 2017 by Dx Revision Watch, #6 on this Phoenix Rising thread http://forums.phoenixrising.me/inde...ary-care-whats-happening-across-the-uk.48710/ along with much other useful information about MUS. )

 

I can't find the actual podcasts for these presentations by Trudie Chalder (they appear to have been removed from the Kings website(?)
Both from 2014:
An introduction to “medically unexplained” persistent physical symptoms
https://www.kcl.ac.uk/ioppn/depts/p...nar-Slides/Seminar-7/Trudie-Chalder-intro.pdf

and

Treatment of Chronic Fatigue Syndrome: the evidence (big chunk on PACE)
https://www.kcl.ac.uk/ioppn/depts/p...s/Seminar-Slides/Seminar-7/Trudie-Chalder.pdf

page 19 "Good news? We found not one but two treatments were effective and safe......"
page 20 "Some ME groups’ reactions :
“..there are deep problems with the credibility of the PACE trial.”
“When is the Lancet going to retract this fraudulent study?”
“This is not a good day for people with ME/CFS.” MEA
“We find the trial results extremely worrying” MEA
“The results are surprising and disappointing.” AfME
“that the trial has shown the therapies to be safe and effective ... is hugely damaging.” AfME

water, ducks back?

 

Thanks @chesire, I hadn't seen them. Another load of documents I want to find time to read!

 

Chronic Fatigue Syndrome is listed as an example for MUS. There's a German guideline going into that direction, too.

Maybe it's time to dig up the "ME vs. CFS" discussion again (well, not literally ), and not to focus on whether the word is the correct one for the disease, but which one is not all mixed up with psychological meanings.

If I remember correctly there's an F-code for chronic fatigue - yes? So maybe the psychs really don't mean ME at all, but that F-chronic fatigue (whatever that's supposed to be...ah, "to be tired is to be tired of", right) and just equate it with CFS (which has the G-code) to increase impact and confusion.

That's something I wondered about in another thread...The authors themselves seem to have said to study "chronic fatigue" (i.e. not ME) - but then they use CFS in the same sentence - which is its own entity, and I think they know it - and people do the rest and equate CF with CFS and then with ME. Furthermore, authorities transport results about "chronic fatigue" to CFS (and ME), too.

I just wonder why this can be done without conflicts. I know contracts don't have to mean anything, but still - isn't ICD widely accepted? Why can some people, seemingly arbitrary, re-invent diagnoses and codes?

This seems to have been done pretty smart...

 

2006
"
Workshop 12

Beyond Simple Techniques in the Treatment of Medically Unexplained Symptoms

Trudie Chalder, Institute of Psychiatry, London

The essential features of medically unexplained symptoms are physical symptoms for which no demonstrable organic findings can be found. The symptoms are not feigned or intentionally produced. Work, social and private functioning are usually impaired and the extent of the disability is usually determined by the degree of belief in the physical nature of the symptoms and/or fearful cognitions about the consequences of them.

Health professionals including physicians and psychologists find these patients particularly difficult to treat. This workshop will provide clinical insight into how these patients can be engaged in the therapeutic process. We will discuss strategies that may be employed when meeting resistance in the patient and demoralization in the health professional."

http://www.babcpconference.com/archive/conference_archive/warwick2006_2.htm#W9

those poor health professionals, maybe some CBT would help, or LP?

 

Some enlightening would surely do them good...Certainly LP can help.

 

NHS website on
Medically unexplained symptoms
"
Many people have persistent physical complaints, such as dizziness or pain, that don't appear to be symptoms of a medical condition.

These type of symptoms are sometimes known as "medically unexplained symptoms" or "functional symptoms" when they last for more than a few weeks, but doctors can't find a problem with the body that may be the cause."

"
Treating an associated psychological problem can often relieve the physical symptoms.

For others, the symptoms may be part of a poorly understood syndrome, such as:

• chronic fatigue syndrome (CFS) – also known as ME
• irritable bowel syndrome (IBS)
• fibromyalgia (pain all over the body)"

or a variety of other illnesses
https://www.nhs.uk/conditions/medically-unexplained-symptoms/

 

Perhaps we could withhold their payments until they improve? You know, stop encouraging then with all those secondary benefits!

 

F48.0 is 'fatigue syndrome'. It's technically exclusionary from G93.3 (postviral fatigue > benign myalgic encephalomyelitis, also known as CFS). The confusion is, of course, something they gleefully take advantage of.