Today is Rare Disease Day

Not many people know that and I must admit that I didn't until an email friend recently pointed it out to me.  She ('Susan') wrote to me not long after the 'Dr Google Revisited' post, perhaps to inform me that for some, the Internet is the only source of medical information available.

Rare Disease UK conducted a survey  "Experience of Rare Diseases: An Insight from Patients and Families" in 2010 and some of it will make your hair curl!  Click on the link provided in the summary and you can read a fuller version of the survey

Amongst the findings in the summary are that patients and families affected by rare diseases wait too long for a correct diagnosis (some unfortunate souls wait as long as twenty years).  A worrying number receive the incorrect diagnosis before the final diagnoses and patients and families worry about the level of awareness of rare diseases among healthcare professionals.

Importantly patient organisations play an important role in the diagnosis of, and are often the main or only source of information for rare diseases.

I asked 'Susan' whether she had consulted Dr. Google - for although we have corresponded with each other for nearly two years - I had never asked her before.  With her kind permission I detail extracts from her response.

"Yes I did consult Dr Google, this was during my diagnosis period, but the first reason I did this was because I had been tested for things I had never heard of, and it was never explained to me (what the test was and why and what it was for) - (I thought this was because they were protecting the patient, not wanting to scare me, but later my thoughts were - they don't know!)  This I found quite daunting because I grew up thinking like most, that if you're ill, you go to the doctor or hospital and they make you better!... So I was thrust into a situation of also finding out that doctors don't actually know everything as I had previously thought...

"I googled phaeo (phaeocromocytoma) because when I got home from hospital I saw this written on my letter, (this was a chance viewing as I would never have known what I was being tested for).  I had never heard of such a thing, so curiously I wanted to know what it meant... this was it fact the first time I used Dr Google... so my experience of Dr Google was one of learning and the computer told me more that I need to know, but it also helped me to understand that what was going on with me was unusual and rare.

"I was also lucky that my cardiologist knew of these rare things, as I later found out many doctors have little or no knowledge of rare illnesses..

"Comments actually said to my by the doctors were that my illness was unusual and rare and mysterious and they would have to think about it; they also said there is definitely something going on with you that they have never seen before and were baffled by the intensity and resilient and debilitating tachycardia I was suffering...

"What I did not expect to happen was that they would go away scratching their heads and leave me to face my life with a debilitating rare illness that turned my life upside down.  I do understand that they don't know everything (who does) but I wish they would at least say they don't know and have some empathy with the patients left to live their life with chronic debilitating rare diseases..."

My experience with Dr Google began with the very same search; my consultant informing me that he thought 'it' was one of two things; the first affecting "two glands that secrete hormones" and I should not be on beta blockers - but he would say no more.  It was a simple task to check the contra-indications in the BNF and google the next day.  Perhaps it would have been helpful if we both had been told that "It might be this - but a simple test will rule it out."  I should state that neither 'Susan' nor I had a phaeo.

Due to us sharing a joint (long way down the line) diagnosis, we 'met' through a patient forum and it was on this forum that we began to understand our condition.  Without the Internet we and many others would be totally isolated.

It is sad that many people have had the 'anxiety' label attached in their long journey for a diagnosis - you will see this mentioned at times on the report of the survey - as it is very difficult to get the medical profession to see past this, once attached.

I found my diagnosis on the Internet - but in took a good few months (and a good few consultants) before I was finally listened to.  I realised that I would have to 'admit' to anxiety (even though I knew it incorrect) as it had become a barrier, and once I did, I was listened to.

There are over 6000 recognised rare conditions - some extremely rare and some more 'common' rare conditions and it would be impossible for a doctor to know them all.  But please docs, if a patient persists with "I know something is wrong!" please accept that they may be right!

Anna :o]

A Love Affair

The Remote Computer Says "No!"

I called you up; gave you my name.

You dealt the cards, I played the game.

The more moves I made,
The more it all became the same
And bored with you,
I left you..

Years on
We reconnected.

I was so surprised
In how you'd grown.
So much more erudite
Than the friend I'd known
And erroneously rejected.

If truth be known,
Second time around
I had become afraid of you.
So much power at my finger tips!
The power of technology;
You can't teach old dogs new tricks!

This old dog did learn
And was able to discern
The sublime
From the ridiculous;
A method so meticulous;
A honing of skills;
A separation of facts from frills;
You offered:
Intelligence as a panoramic view
And, I then again
Became friends with you.

You have given me so much:
(Have I just taken and you have given?)
This arena where I spiel forth;
Forums for debate -
Of how human kind can
Love or hate,
And passions
So passionately driven
Can unite or rent the world apart;
Subscriptions to the world of learning -
The world at my finger tips;
Affairs of the heart
In email-ships;
Of cunning asides
And clever quips;
My, you have opened my eyes!

But of late I have sensed
Your disaffection
With our relationship;
You sometimes cut me off,
But I must admit surprise
That you no longer
Accept my calls.

A loss;
A bereavement
That I initially denied;
But by day five
Emotion
(Tears welling in my eyes)
I cried openly and thought
What the hell is this?
And sought comfort
In self-analysis.

I have said for years
That you are my social life;
But now think it is much
Deeper than that -
You have become my husband
And I your wife.

I am having an affair with you.

Before we reconnected
I had adapted
(Accept the things you cannot change)
To my situation;
But losing you
Has resurrected
My loneliness,
My emptiness
And total isolation.

Knowing you and losing you
Has left me vulnerable
And I don't like that.

Anna :o]

PS  Writing this at a friends house - so no pretty pictures!  Also ajolopies for another morose post!
It must be my blue period!

Yay!  Came home today and my boyfriend's back!

He did bring seven viruses with him which took

two hours to clear - but I will forgive him anything!

Remote computer - I love you!

Pretty (sad) picture now added above!

Happy one too!

.

Brothers

The scallywags!
Playing soldiers,
Playing tag;
Jump in puddles;
Rugby huddles;
Sly smoke of fag
Behind bike shed.

When at school
Defy the rules.
Spotty youths now -
Heart rules head.
Brain in trousers;
Hormone led.

Trainee men now;
Stories aimed to vex.
Sibling rivalry
Based on sex
And notches on the bed.
The easy cow,
So easily laid and
The triumph
Of the virgin maiden made.

Married now
And life passes by;
Kids grow up
And you heave a sigh
As you
Cannot realise
Where the years have gone
For that baby
That once was your son,
Your child,
Is now a man
And history
Repeats itself
As he relates
His conquests.

Many years ago
A quirk of fate
Decided
To rob you of your mind;
No more shared crosswords
Of the intellectual kind;
Or shared cross words
That is sometimes
Found in partnerships;
But not ours -
It was a melding of minds.

Your brothers
Who were supportive initially
Dropped by
Now and then
No longer do
Or phone
To enquire after you.

Where are you?

This was the first Christmas
And New Year
There was not
A sound from you.

Where are you?

My God
I know how hard it is
To lose someone
Who still lives.
But I will not
And cannot forgive
Your silence!

I hope you rot in hell!

Bitter Anna :o[

Dr Google - a patient opinion (revisited)

Why do patients consult Dr Google?  It may be that they simply want to check out (self-perceived) minor symptoms so as not to bother their GP - or conversely checking those same minor symptoms as they misinterpret same as the first sign of a major illness; they may be in the midst of investigations and feel left out of the information loop, vulnerable and frightened; they may have a diagnosed condition and wish to educate themselves in and understand how their illness will impact on their lives and thereby develop coping strategies.

Disregarding the 'worried well' and those who seek antibiotic therapy for the slightest sniffle - patients (I am thinking of me here) seek GP advice in an effort to provide an answer to their presenting symptoms.  Often doctors are able to diagnose immediately, prescribe medication if required and the patient, reassured, will go on their way.

Sometimes a diagnosis may take a little longer and the patient will receive the full input of their doctors skills and appropriate care during and up to the time the diagnosis is finally made

At times, the illness may not have evolved into something recognisable and a 'wait and see' period may be necessary and perhaps following this, the patient will be referred to a specialist - at times the referral may be immediate if red flag signs/symptoms are apparent..  This is the time when patients feel most vulnerable as they lack an answer, at times, they are fed little information as it would be inappropriate for a GP to state positively "I think you have this" without medical evidence; whatever reassurance is given at this time is meaningless (to them).

Patients need a name to give to their illness - whatever it might be - as they need an end to uncertainty; I quote Balint here:  "Perhaps this case may also help us to understand why patients have a great need to be told what their illness is, what fears may be rampant in them if no name is given, and, last but not least, what the inevitable implications of any diagnosis, however innocent-looking, may be."

Patients who are referred to secondary care, that of a consultant specialist, often find themselves going to and fro between specialist and specialist and their GP.  Speaking from experience this is a terrible time where the patient receives very little information and in a sense, is on the outside looking in.  I think that doctors tend to forget that patients exist (and think) outside of the time of the consultation and feel abandoned by the profession whose help they are seeking.

This is The Collusion of Anonymity where no physician has full responsibility for the patients as he sees doctor after doctor (all offering their own differing opinions) and the patient is left in a no-mans land; respectfully I quote Balint again:  "Nobody mentioned, and perhaps nobody was even interested in, what happened inside the patient while he was being whisked from doctor to doctor....."

What ever the original driver, however simple or complicated the presenting diagnosed or undiagnosed illness, patients consult Dr. Google purely and simply because they need an answer.

Doctors and Dr Google

As I am not a doctor, I am not qualified to offer a doctors point of view and therefore what follows is based on information gleaned from research or personal observations.  Please, if I am totally wrong docs - tell me as I live to learn.

The doctor-patient relationship is an unequal one and must always be so.  Doctors  have a vast knowledge base regarding medicine and we patients have very little.  A patient arrives voluntary and submits to medical attention.  There has to be an element of trust in our doctors' skills and ability to provide the answer we are seeking.  The relationship is not always therapeutic in that both doctors and patients personalities are sometimes opposed.  However, even in this case, we attend our doctor and provide him with clues in the expectation that he can provide us with a name for our illness.  At times we may not accept a given diagnosis for a variety of reasons.

Doctors at times feel threatened and insulted by the arrival of Dr Google - the unwanted and uninvited interloper who upsets the dynamics of the doctor-patient relationship.  The doctor may also be fearful for the mental health of his patient who might have read something on the Internet that is pure nonsense - and there is a lot of it out there - that might instill in them fear or provide them with false hope.

Some doctors welcome their patients interest in their condition - whether diagnosed or not - and see it as a positive step in the doctor-patient relationship.

Doctors visit Dr Google - but very differently from the average patient - recognising where quality lies in peer reviewed articles, professional medical sites and a multitude of other sources.  It is estimated that there are 3 billion Internet medical articles.

It is true that Dr Google is not going to go away and doctors will have to accept this.  It is also true that patients remember perhaps a half of what doctors tell them, so will seek information elsewhere.

Is Dr Google a friend or foe?

He can be either.  A recent survey by BUPA covering 12,000 people around the world found that globally, 47% of respondents used the net to self-diagnose and 68% sought information on a medicine.

The problem lies with the quality of information looked at and its potential to make a person imagine the worst for minor symptoms or ignore symptoms that would indicate a serious condition.  The term cyberchondria was coined in the year 2000 to describe how patients' symptoms escalate as they self-diagnose.  It has to be remembered that a search engine cannot diagnose - it needs a person, or more accurately a doctor to make the final diagnosis.

Nevertheless, Dr Google can provide a wealth of quality information for a patient if they know where to look, and can also 'talk and give time' to patients about their presenting illness in a way that doctors cannot do because of time constraints.  Doctors and patients must reach a happy medium.  Perhaps doctors could prescribe helpful sites?

Dr Googles BIG limitations

Dr Google can only offer what has been fed to him and as said, the potential to mis-inform and instill fear in the heart of the reader is dependent on the quality of the information provided, and the readers ability to interpret what is said and to sift out the dross.

I decided to 'consult' Dr Google myself as an exercise to discover possible pitfalls.  I keyed in just two words (the site on the body and the presenting symptom) of a benign condition and visited the first two pages.   I did not enter the 'question' sites - just those that appeared to be true medical sites - just three in total.  The first offered a doctor to patient differential diagnosis and I was able to locate my 'problem.'  The remaining two offered doctor to doctor differential diagnosis and these confirmed my 'problem.'

I then transposed the two words and inserted 'on' in the middle and was met with totally different results.  Of the three quality sites (including Medline) I visited, two suggested quite strongly that I had cancer and Medline inferred in the first sentence that I had.   I don't!

I then visited http://ffff.at/dr-google/ (this will not provide a direct link so you must google it and click on) - which I presume is an official google site?  I keyed in the same three words and clicked 'I'm Feeling Icky' and the one result was cancer - no ifs or buts!   I then clicked 'Second Opinions' and was then redirected to the pages I had originally consulted.

I then read this article on Cyberchondria: The perils of Internet self-diagnosis (interesting read) and then visited the 'trusted' medical sites listed at the end keying in the same three words.  Medhunt had the dross Wrongdiagnosis as the first entry, followed by three identical entries of the first site I had visited on my search - the doctor to patient differential diagnosis - and the rest were related to plastic surgery; NHS Direct, although offering the body site did not offer the symptom and was therefore useless;  Patient Line gave the best results and was quite informative and finally WebMD offered a mish-mash of irrelevant and unrelated results to the question posed.

So beware patients - Dr Google, if you look in the right places might be helpful if you understand and are able to discriminate in what you are reading - or he may scare the hell out of you.  That said - I have used him and not found him wanting - but it is about recognising quality sites.

If you should find something out there, don't take the printouts to the doctor - but inform him what you have found.  If he is a good doctor he will ask you to bring them to the next appointment.  Respect him (or her) and he will respect you.

Michael Balint: 'The Doctor, His Patient and the Illness'  (Churchill Livingstone)

Anna :o]

Wilful Neglect

Although a nurse - I am indeed lucky to work outside of the NHS - for if not, I would feel very threatened, undervalued and unprotected.

I would bring your attention to this statement from the DoH which was briefly reported in the media and has now disappeared into oblivion.  It states that doctors and nurses should be charged with a new crime of 'wilful neglect' if they fail to look after patients.  Sounds fair to me

It also states that ".... ensuring that providers have sufficient qualified, skilled and experienced staff and patients are protected from the risks of inadequate nutrition and hydration."

I can't speak for doctors, but if nurses such as Nurse Anne go home in near tears, as she is terrified that she has made a mistake or killed someone, as she is stretched to the limit by dangerous (qualified) staffing levels - how will nurses cope when this becomes more widespread?

Nurses in hospital are natural scapegoats.  If a doctor makes a drug error and the nurse carries out his/her orders, the nurse is responsible and accountable for carrying out said orders.  If a cadet/HCA fails to assist a patient with feeding, come 'wilful neglect' the nurse will be responsible and accountable - even though she will be unable to supervise as she is carrying out doctors orders, doing meds rounds, attending to patients in difficulty and completing the mass of required paperwork

The Conservative Health Manifesto stated "We will cut the cost of NHS administration by a third and transfer resources to support doctors and nurses on the front line."    Aint happening.

If nursing levels sink even lower - patients are going to starve and become dehydrated (outside conditions where a patient declines food and hydration at end stage illness) and yes it does happen now due to dire staffing levels  - nurses will pay the price for something that will become increasing beyond their control.

Can anyone speak up for the medical and nursing professions please?   We meed more - not less!  Why can you not imagine they are forests/woodlands and raise Cain?

Anna :o[