Saturday, January 19, 2013

Stephen Ralph on Behçet’s, ME/CFS and Misdiagnosis by Psychologists (1)

See part 2 here.
Permission to Repost

Dear Reader,

As some of you reading this will know, I was dragged into the world of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome way back in 1996/1997. At around this time I jointly set up MEActionUK and the companion website

At that time I had been a practicing diagnostic Radiographer at a busy district general hospital in Dorset.

During the three years of my training and subsequently over the period of practice I extensively covered human anatomy, physiology, pathology, patient care and hospital practice as well as radiographic photography, equipment and radiation physics.

Some of our lectures mirrored those of medical students.

We were familiar with “Gray’s Anatomy” for the sort of detail we needed to cover.

Although optional, I attended an autopsy during my training to enable me to appreciate the internal anatomy that we had been studying for many months.

I also observed open heart valve replacement surgery – the anaesthetist let me stand where he usually stood so I could see what was where and how the surgery proceeded.

Our education and my subsequent career was comprehensive until I was forced to retire due to ill health.

Over the 10 years of my education and career in diagnostic radiography, it was drummed into me that there was an overriding importance within my profession to provide the best quality radiography possible to enable the doctor to form the correct diagnosis with thanks to the information presented to the radiologist (a doctor specialising in reading x-ray’s and performing x-ray examinations) or indeed any generic doctor or even medical students examining our work in a busy A&E.

If our work wasn’t to the highest of standards then we understood that there was a sliding scale of risk that a radiologist or non-specialist doctor could draw the wrong conclusions – missing a pathology from poor radiographic technique and then forming the wrong diagnostic opinions about what they were looking at.

The seriousness of not doing my job well enough – potentially allowing a medical misdiagnosis to take place was at the back of my mind every single day of my career.

During 1996 everything changed for me when my health fell apart after a serious flu like virus.

As a patient over the last 15 years I have encountered – on numerous occasions – members of the medical profession who are so coldly detached – because this is how they were trained to be – that they appear to be incapable of human compassion and making an apology when such an apology was due.

From my career experience in the NHS and my experience as a patient, true compassion is left to the nursing staff and others who carry out the instructions of a doctor.

The issue of medical mistakes – misdiagnosis and missed diagnoses along with the sometimes fatal errors such mistakes or misjudgements cause will be central to my campaigning in the coming months and years.

There are very serious and fatal flaws in the NHS that have been compounded over recent decades by issues of money – the cost of medical tests and investigations - the way patients get diagnosed by doctors who are quite possibly insufficiently qualified or experienced to make carefully considered and accurate diagnoses that can have profound long term outcomes for the patients concerned.

When you have read this, sit and contemplate for a while.

Ask yourself the question as to the actual competence of the doctor who gave you the diagnosis that you have been living with for years.

Was this doctor just a GP or a regular rheumatologist or a psychiatrist be that a general psychiatrist or a liaison psychiatrist with a particular interest in medically unexplained physical symptoms or "functional somatoform distress syndrome?"

In my own case, my GP, back in 1996, was totally oblivious to the fact that Epididymitis was one of the key signs of a possible diagnosis of Behçet’s syndrome when associated with all the other symptoms I was reporting to him - sometimes on a fortnightly basis when I was told to, exercise, stay at work or face losing your job."

But then, why would this GP know about Epididymitis and its relation to Behçet's syndrome?

General Practitioners have to deal with hundreds and indeed thousands of medical complaints every year. Most of those complaints are common conditions but when a condition is physically invisible to that doctor, the doctor then turns to what has been placed in front of him in the medical journals.

If those "invisible" symptoms persist for over 6 months, a simple solution is to diagnose Chronic Fatigue Syndrome and then to ascribe further physical symptoms reported by the patient or victim to the primary diagnosis.

As minimal investigations are suggested, no other pathology will be found.

The GP I saw back in 1996 never asked me about mouth ulcers and never considered that my skin problems were anything else other than adult acne.

The fact that I had severe multi-joint pain without signs of arthritic degeneration raised no alarm bells when linked with an ESR blood test of only 4 to 7.

My GP never bothered to mention the Behçet's related problems when he referred me not just to one specialist but to two specialists after I requested a second opinion.

Because neither specialists saw any supporting evidence, their own medical ignorance – based on seeing only a handful of stereotypical cases of Behçet’s during their careers – left them open to ignorance of the wide range of actual presentations only recognised by a few highly qualified and interested specialists who could recognise and appreciate such a pattern.

In short, those rheumatologists were themselves suffering from an ignorance of pathology.

This ignorance of presentation of rare pathology resulted in me being subjected to inadequate medical opinions and the resultant medical misdiagnosis not once but twice and the termination of my career.

The second misdiagnosis stayed with me for 12 years due to the very nature of medically unexplained physical symptoms or MUPS.

No further investigations and no reassessment - theoretically forever.

During August 2003, my late father (previously as fit as an Ox at the age of 71) was medically misdiagnosed twice by two different GP’s neither of whom seemed to have competent knowledge to do the right thing or recognise the potential seriousness of how my Dad was presenting when he was repeatedly visiting the GP surgery - deteriorating on every visit.

Instead of being referred to the local hospital for a full post TIA/CVA assessment, my Dad was given a scrap of paper with the briefest of advice on how to self manage after a stroke. At that time he had a slight limp and a slight left sided facial palsy.

At the coroner’s inquest, my Dad’s GP had only one line of defence – “brain tumours are rare.”

That’s pretty much all he had to say.

Previously in January 2004 when Dad had become almost totally hemiplegic - with a "Zimmer" frame, falling over around the home - during a phone call I made to my dad's GP - I angrily demanded that the GP get my Dad to a CT scanner urgently.

The GP said “you people (diagnostic radiographers) tell us (GP’s) not to bother with CT scans on geriatrics because such scans do not affect management.”

Following this demonstration of medical incompetence and/or ignorance and just under six weeks later - my Dad died.

This leads me to ask the question "how many people die from acts of casual medical incompetence and misdiagnosis?"

I also asked myself this - “are the majority of people who are diagnosed with CFS or ME simple victims of medical ignorance or medical negligence/misdiagnosis by the medical profession itself?”

Is it the case that the actual diagnosis of ME or CFS has been created to fill the gap where medical ignorance presently sits - making it easy to form what is effectively a "null" diagnosis of Chronic Fatigue Syndrome when the doctor concerned has simply not got the knowledge or the money to make the effort to refer and investigate any further?

How many of the members of Co-Cure were diagnosed with ME or CFS by their GP or family physician?

How many were diagnosed by a general or indeed a liaison psychiatrist?

How many were diagnosed by a general rheumatologist?

How many of those doctors had detailed specialist knowledge of a range of rare sero negative diseases that would not be identifiable by the usual set of blood tests or routine investigations that would then result in a 99% negative set of results?

Why do we as patients accept a diagnosis given to us by doctors who in fact could be insufficiently qualified or experienced or indeed professionally competent to make a carefully considered and accurate differential diagnosis?

How many patients have died as a result of missed diagnoses of conditions including cancer and heart disease – the symptoms of which were wrongly ascribed to a previous primary diagnosis of CFS or ME or MS or Behçet’s disease or Crohn’s disease?

In my own case and to illustrate just how big this problem is, the disease called Behçet's syndrome or Behçet's disease was first recognised back in 1937.

It has taken the NHS in England 75 years to create just three specialist centres who employ a range of doctors who have become specialists not just in rheumatology or neurology or dermatology but also super specialists in Behçet's syndrome.

When I was fighting my corner between 2004 and 2008 I was told by the Behçet's Syndrome Society that one of the common misdiagnoses that patients with Behçet's had suffered - sometimes for decades - was the misdiagnosis of Chronic Fatigue Syndrome or Myalgic Encephalomyelitis.

It never ceases to be an irony to me that in the UK, the gatekeeper of the NHS - the doctor that forwards you onto a specialist - or prevents you from seeing a specialist - happens to be a general practitioner who often has to be the jack of all clinical specialities and a master of a few or indeed none - other than general medicine.

In this country there is an ongoing breakdown of trust between doctors and patients.

We know there are very good reasons for this.

One of those key reasons is the simple fact that doctors get important things wrong.

For doctors the getting things wrong is a matter of making an opinion that could be wholly wrong in fact.

As far as the patient is concerned, we are basically living with an NHS lottery of medical opinions that for common complaints and conditions will probably be right but for those of us with complex, rare and often "invisible" diseases that do not necessarily manifest physical signs, we are left with general practitioners who could quite possibly hand out second rate, suboptimal or dangerous medical opinions or even medical misdiagnoses and missed diagnoses.

In some cases, the patient dies as a result and in others, the patient gets left with the wrong diagnosis for years and indeed decades.

There is barely any recourse for the patient to be fully reassessed and investigated from a totally clean sheet by the handful of genuine super specialist doctors in this country who do have detailed knowledge about rare diseases and the wide range of expressions of medical conditions that are bio-medically explainable to those few but not to the majority of the general medical profession.

For 8 years I was lead to believe that all my “invisible” symptoms that I reported to my GP were medically unexplained physical symptoms.

I moved house after my Dad died and through the NHS lottery I just happened to meet a GP who had a friend who had Behçet’s syndrome.

Four years from that consultation all those same “invisible” medically unexplained physical symptoms became acknowledged as fully medically explainable and partially treatable with a range of medications that I had previously been prevented from being prescribed.

All it took for this miraculous 180% about turn was a simple change of medical opinion.

In my view – this is where we should be fighting.

The present system of diagnosis by GP’s and general specialists who do not have full knowledge of the wide range of presentation of rare disease is a fundamentally unsafe system leaving patients in real danger of suffering medical misdiagnose and medically missed diagnoses.

Those patients will then be left - shunted into a cul-de-sac and the ultimate failure of treatment will result in nothing happening.

In the case of Chronic Fatigue Syndrome this single research paper really does expose just how open a patient has become to being a victim of medical misdiagnoses by doctors who are simply insufficiently qualified or knowledgeable....

Functional somatic syndromes by speciality

Infectious diseases -- Chronic (postviral) fatigue syndrome

Functional somatic syndromes: one or many?

S Wessely, C Nimnuan, M Sharpe

Various names have been given to medically unexplained symptoms. These include somatisation, somatoform disorders, medically unexplained symptoms, and functional somatic symptoms. In this review, we use the term functional somatic symptoms. (1) We define a functional somatic symptom as one that, after appropriate medical assessment, cannot be explained in terms of a conventionally defined medical disease.

This single paper reveals tells us that a vague, imprecise and totally unstructured "appropriate medical assessment" is all it takes for a patient to be shunted in the direction of psychiatrists who are themselves single minded in their pursuit of medically "unexplained" physical symptoms.

To this paragraph introducing the research paper above, I ask the question - what exactly is an “appropriate medical assessment” and who is competently or sufficiently qualified enough to make that highly important and potentially profound assessment when in reality there are an extensive set of alternative and complex diagnoses and explanations not usually known in detail by General Practitioners or psychiatrists or even jobbing rheumatologists or other specialists who don’t have "super specialist" experience or a particular interest in such rare alternative conditions to Myalgic Encephalomyelitis or Chronic Fatigue Syndrome?

In reality the "invisible" symptoms of Behçet’s syndrome almost totally overlap with the identical "invisible" symptoms of Myalgic Encephalomyelitis.

You then have to ask the question - "where does a diagnosis of ME stop and where does a diagnosis of Behçet’s syndrome actually begin?"

When does "medically unexplained" get instantly converted into "medically explained?"

The doctor who only knows about the “classic” stereotyped signs of Behçet’s syndrome would quite probably assume that clusters of mouth ulcers or genital ulcers are the signs they would recognise as defining a possible case of Behçet’s.

A rheumatologist told me exactly this when I was referred to a hospital for my first "clean sheet" assessment. He was wrong.

Such doctors are then faced with who to refer that patient to because by and large there are no specialist centres of excellence in the UK unless you live in or can travel to London, Birmingham or Liverpool.

Failing this you will find yourself referred to a general rheumatologist, or general dermatologist, or general neurologist who simply will not have the highly specialist knowledge that this patient will need the value of.

On the sliding scale of diagnostic presentation, it is possible to have a case of Behçet’s syndrome without mouth ulcers or genital ulcers or a positive blood test or scan or investigation.

Every time a patient meets a doctor who has insufficient knowledge, that patient runs the real risk of being medically misdiagnosed – labelled as having one condition when that condition is totally the wrong condition.

Those decisions can be profound and at times fatal.

I have no doubt that such decisions are being made on a daily basis.

Those decisions are decisions I became a victim of 12 years ago.

When the medical misdiagnosis does eventually get recognised, the patient rarely gets an apology.

The gravity of what has happened gets quietly swept under the carpet and the drugs and the treatment that was not given for years and years, suddenly gets prescribed as if the patient had just been freshly diagnosed having been previously fit and not chronically ill for years or even over a decade.

For the patient, the only recourse they have is to ask for a second opinion at the start if they fear that their diagnosis is wrong.

Or if their family has the money, they can take legal action against those who made the mistakes that ruined or terminated the ;life of their loved one.

In court the doctors concerned can quite often get away without being present - represented by solicitors as was the case at my Dad's Inquest hearing.

In my view, the ancient system that has existed in the NHS in the United Kingdom for decades is no longer acceptable for patients.

Several years ago, I had an exchange of e.mail with Professor Simon Wessely.

I vividly remember asked Professor Wessely how many patients he had seen pass through his CFS clinic who had gone on to be diagnosed with an alternative medical condition making his diagnosis or the referrers diagnosis of Chronic Fatigue Syndrome a medical misdiagnosis?

Professor Wessely never answered that question.

I asked Professor Wessely what specialist knowledge he had to enable him to form an accurate differential diagnosis between CFS or Behçet’s syndrome or another rare sero negative disease?

Professor Wessely never replied to that question.

I would be very interested to know if any statistics exist within liaison psychiatry that could reveal just how many misdiagnoses occur in association with "medically unexplained physical symptoms or "the chronic fatigue syndrome."

I very much doubt there are such statistics nationwide because again - keeping such statistics is a conflict of interests for those members of the medical profession who are building their careers.

As mentioned at the start of this piece, from my education and post graduate clinical practice as a diagnostic radiographer, the issue of diagnostic accuracy and the care needed to make a diagnosis of any kind was drummed in to me over a period of 10 years.

Providing poor quality radiographic imaging could lead to a patient being wrongly diagnosed and theoretically losing their lives.

In my profession, getting things wrong and the subsequent errors for the patient seriously mattered.

I have no doubt that Professor or Sir Simon Wessely knew exactly what I was getting at when I asked him those 2 simple questions.

In my view, the medical profession as a whole has a significant conflict of interests within itself surrounding the whole issue of medical misdiagnosis, how a diagnosis is formed and how subsequent pathology such as cancer or heart disease can become missed diagnoses due to the misattribution of presumed "medically unexplained physical symptoms" onto a prior diagnosis of Chronic Fatigue Syndrome.

Over the coming months and years I will be firmly grasping this nettle and I will not be letting go until the patient has been afforded significantly more protection from the mistakes, ignorance and misdiagnoses routinely handed to them by members of the medical profession on a monthly basis here in the UK.

Here are just a couple of ideas to put into a patient's Bill of Rights to protect a patient from the actions of a doctor or doctors.

When any diagnosis is given to a patient there should be a time limit on that diagnosis should subsequent treatment fail to improve the symptoms relating to that diagnosis.

In the case of "CFS/ME" the time limit could be 18 months just as an example.

After that fixed time, that diagnosis should be officially struck off the patient's records and declared unsafe due to a failure of treatment presently declared as "best practice."

That patient would then have the right to an independent "clean sheet" reassessment with a specialist(s) at the highest level.

Let us call them "super-specialists" like those who work at the 3 centres for Behçet's syndrome who deal with rare medical diseases that coincide with the "invisible" symptoms of that patient.

If that patient is found to have another medical condition and if he/she is found to be a victim of a medical misdiagnosis then the doctor or doctors who were involved with that medical misdiagnosis of the patient will have that event put on their CV.

The same would apply if a co-morbid condition is uncovered such as cancer or heart disease.

The doctor or doctors should be forced to apologise in writing to the patient for getting things wrong.

The doctor or doctors concerned should be made to go through further training so that such mistakes do not happen again.

If the patient should die or be put close to death as a result of a medical misdiagnosis then action should be taken to remove that doctor from making any further diagnostic opinions in their present capacity will an extra year or more of further training before being let back on the medical register.

Or, if full medical negligence is found in Court then that doctor should be struck off as is the case today.

Let's call this new structure "Performance Related Medical Practice."

If the patient is found not to have any other rare medical disease then that patient reverts back to their original diagnosis but the diagnosis would be flagged in their medical records as a diagnosis "under caution" due to the prior failure of treatment claimed by previous "specialists" to be effective when obviously such treatment has failed.

Detailed "Under Caution" statistics and misdiagnosis/missed diagnosis statistics should be made publically available on an annual basis.

And again in a further 18 months, a patient with a diagnosis "under caution" should have the right to have a further assessment to ensure that nothing has been missed.

These are the sort of issues I will be getting to grips with in future.

We the patients presently have no rights... we are presently "David" and the medical profession is presently "Goliath" holding all the cards and getting away with medical mistakes on a weekly basis.

We the patients are the ones who suffer and it's about time that doctors were fully held to account.


Stephen Ralph DCR(D) Retired.

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