For many hundreds of years the effects of what was previously called ‘Mild Head Injury’ (what we now know as Post Concussion Syndrome) were completely misunderstood, it was treated widely as a type of madness in special hospitals, sanatoriums and even as a form of madness in lunatic asylums!
It wasn’t until the 19th century that significant changes in general attitudes to mild head injury occurred. This was due mainly to the beginning of the industrial age and significant scientific progress of society at that particular time; the inception of the railways and advancements in the study and medical research of neurology had brought many revelations, some of which cast new light on this age-old problem.
In 1866 a Danish born surgeon called John Eric Erichsen was working in London when he published his important paper on the effects of mild head injury symptoms which were widespread among railway workers. Until this time he had lent his own name to the condition (Erichsen’s disease) which he described as a ‘molecular disarrangement to the spine’. This was at a point when modern litigation began to rear its ugly head for the first time in relation to health matters and disputes between individuals in our society, and many legal defendants sought evidence, to deny the reality and existence of the particular condition known as railway spine (or railroad spine as it was known in America).
Erichsen boldly proposed that the condition was a real phenomenon, often affecting manual workers whose task was that of the laying and construction of railway tracks (hard and demanding physical labour in an age before modern machinery).
He theorised that the repeated shocks from sledgehammer blows was causing a repetitive jarring of both the spine and brain in these workers over some period of time. This same problem and its effects could also be found in passengers who were victims in railway shunts and accidents (he observed them to be similar to those of whiplash); hence the legal arguments in court cases produced counterclaims from defence lawyers that what was known as railroad or railway spine was a figment of these claimants imagination in order to obtain monetary gain!
Erichsen went on to gain favour later in his career as Queen Victoria’s surgeon and was also made a Baronet and a member of the Royal fellow of surgeons whilst working and living in London. The unfortunate premise of counterclaims against the reality of railway spine as a valid condition has unfortunately stuck to this day, thanks to the growth in the need for legal litigation throughout the 20th century.
One wonders if circumstances had been different regarding the early controversy with the railways, whether there then would have been any doubts whatsoever regarding the realities of Post Concussion Syndrome today. Quite possibly not!
During the early years of the 20th century what was originally called Erichsen’s disease and then railway spine became more commonly known as the condition called shell-shock. During the First World War it became an epidemic amongst soldiers on both sides of the conflict. What is more precisely known today as Combat Stress Reaction was very common during this period in history.
It was found that even soldiers without any visible head or physical injuries were suffering from very similar symptoms and effects to those who had suffered actual brain injuries on the battlefield.
Because of the strong elements of psychological and mental disturbances which accompanied shell-shock, there was once again plenty of adversity surrounding those unfortunate soldiers who suffered with it in World War I. This was in an age before modern psychiatry, psychology and knowledge of post-traumatic stress; therefore many such soldiers were persecuted and even prosecuted by their own superiors, labelled as traitors and cowards! Military records from the time show that several thousand soldiers were put on trial during this period mainly for their so-called cowardice, and a few hundred of those unlucky souls were also executed following court-martial as a result. This misunderstanding further deepened the divide between benevolent medical science and the suspicious disbelief of the legal profession, which continues in some form or another to this very day. To test this theory one only need to perform a quick search of the Internet for legal opinion on PCS to find either badly written studies funded by and for legal firms denying its actual existence as a real, debilitating neuropsychological disability; or hundreds of no-win no fee adverts from companies wishing to help PCS sufferers in suing anyone who may be responsible for their injuries! But that’s enough lawyer bashing for now… (Oops, can I actually say that?)
During the Second World War the term ’shell-shock’ was banned by the British military authorities in order to avoid further hysteria regarding an epidemic, yet problems continued again as a direct result of ground troops in open combat, however as another generation of brave young men made the ultimate sacrifice for their countries there was more of a required move towards the beginnings of the development of modern psychiatry. The term ‘post-trauma concussion state’ was coined in 1939 by military doctors to replace the term shell-shock and describe what we now call PCS. Still many veterans of war suffer those horrific mental scars from horrors of battle, and further wars around the world most significantly in Korea, Vietnam and in recent history the Middle East have created third, fourth and fifth generations of men and women who’ve suffer from the effects of acquired brain injury sustained in battle.
As a result of battle related PCS many military studies on neuropsychology have been undertaken, and have greatly contributed invaluable data and statistics which can be used in the future to help develop further treatments for PCS. Through the many thousands of souls who have sacrificed their lives in these wars has come much important discovery about the treatment and rehabilitation of PCS sufferers, something which otherwise may not have been achieved over the last century.
In fact my own grandfather Alfred Bottomley was a victim of shell-shock during his own service in the Second World War after being thrown from his motorcycle by an enemy explosion nearby. Despite his injuries and resulting vision problems he carried on in the service for several years before being honourably discharged and was a decorated soldier in recognition of his bravery and sacrifice. Sadly my grandfather was never quite the same again afterwards according to his family. He passed away whilst I was very young and I never got to know him personally, the condition dramatically altered his life and had a direct impact on his own family life as a result. This book is also dedicated to his memory and to that of all who have suffered PCS under its many different names down the years.
This leads us to the current day situation regarding PCS, our perceptions of this condition as an invisible illness/hidden disability and still what is seen as a very complex and much misunderstood subject. Today we seem to be in the early days of an important transition with PCS. Old attitudes and centuries-old conflicts over the status of PCS as a real and debilitating condition are being contested, challenged and changed by the very people who know most of all how utterly life changing and frustrating living with PCS can actually be… Yes that’s right. Ourselves! Of late there has been a gradual wave of action spreading east from the USA, where the problem surfaced into the public mind due to problems in NFL, Baseball, Hockey & Soccer; these ranged from kids being concussed on school playing fields to high-profile NFL suicides due to repeated concussive issues. The resultant fall-out eventually found its way into world football’s arena during the 2014 FIFA World Cup, something which then had a domino-like effect into the UK & Europe. So we stand on the brink of more encompassing set of social changes now in the 21st century.
With most other severe, chronic illnesses and disabilities the driving force in our modern world is widely based on the perspectives and opinions of the patient/sufferer, as much as it is on medical opinion and thought. Somehow with PCS this is not the case at all the case, even now after a century and a half of debate and controversy, primarily because of its misunderstood nature and changing forms of its definition, we can find little satisfaction with the current state of affairs. For many years PCS has been wrongly labelled as a mental illness, something which has increased the stigma already surrounding brain injury. We now know more about this neurological disorder than ever before in history, however the big cop-out which most of us face repeatedly every day, both from our health services and health professionals is a well-known set of excuses. The excuses are based on simple misunderstandings and general ignorance regarding the condition itself. How many more times will sufferers have to listen to the same excuses before we realize that it is simply an attempt to pull the wool over our eyes? Well not so long in reality as many people are growing in awareness and refusing to accept excuses and waffle in place of their basic patients’ rights!
Here are some of the excuses which you are likely to hear on a regular basis from health service doctors and physicians: “PCS is untreatable!” – Untrue, “There are no treatments available which are effective!” – Untrue, “We do not know enough about PCS yet!” – Untrue, “We can only treat some symptoms!” – Untrue, “There isn’t enough evidence that PCS is a real illness!” – Untrue or (my particular favourite) “We do not have the money available to treat PCS!” – Ridiculous (especially for a society that spends somewhere in the region of $400 billion a year on drugs)… And the list goes on, and on, and on to a point whereby you could substitute anyone of a dozen different excuses, all used as reasons to cover up the truth. So exactly what is true? Well money is always a motivating factor, such as the $490,000,000 paid recently in NFL to players; that must have a bearing on how the UK & European countries reacted to the 2014 FIFA World Cup issues highlighted in Brazil? Well, whatever the motivation it is clear that the time has come to end denial & silent suffering for many, many thousands each year.
Evidence from my eight years of intensive and personal research into PCS all lead to the same conclusion, this being that there is a widespread aversion amongst medical professionals and healthcare providers in Britain in general towards seizing the mantle and tackling PCS due to the scale of the problem, and their commercial loyalties to the pharmaceutical industry play a part. There is seemingly a silent fear of healthcare professionals admitting that, not only have they been wrong about so many aspects of the condition and its treatment in the past, but also that there would have to be an almost complete re-learning of what they already know from limited medical textbooks. Nobody will publicly care to admit that they truly do not know how to tackle a specific condition like PCS.
Indeed if we consider the scale of pharmaceutical usage in modern health care, then we can see yet another aversion towards the treatment of PCS, as it is well-known amongst experts that continued medication of the condition is nearly always linked to a deterioration of the PCS patient’s condition and health. Medication is King in modern health care today and our health service’s medical textbooks are mostly written by the pharmaceutical companies who profit from this arrangement. It’s not that I am opposed totally to pharmaceutical types of medication as it has its vital place in preserving health and saving thousands of lives every day; however its uninformed and indiscriminate overuse or misuse with regards to PCS can have tragic and even lethal consequences also, such as negative drug reaction, dependency, addiction and overdose. It is a sad fact that there are more deaths each year from overdoses of prescription medications than those of illegal drugs!
There is a traditional proverb in Japan which fits the bill perfectly; which states that “When the only tool you possess is a hammer, then everything starts to look just like a nail!” That is certainly true of the science driven pharmaceutical industry and its customers in the healthcare world. Doctors, physicians and health care professionals when qualifying are usually required to undertake a commitment to what is called the ‘Hippocratic oath’, this has been heavily modernized and changed from the original yet still requires all such professionals to make honest and ethical their treatment of patients, ‘Primum Non Nocere’ – to first do no harm (in other words not to make the condition worse) and to treat their patients as a whole beings, not simply just as a symptom or a collection of symptoms!
All this seems quite contradictory to what we’re being told; yet when we take into account the current ethos of plying PCS sufferers with as many strong medications as possible during their crucial period of recovery; it seems to make sense that the overall motivation is seriously wrong if the health and welfare of patients is the number one priority. It’s not a mystery at all when we look at the true facts which are available, using them simply to join the dots together, we can see that expert advice and opinion on PCS is being ignored in favour of profit. I have had much confirmation expressed within the comments and opinions of doctors and physicians far and wide regarding this problem. So many have admitted to the same feeling of being trapped within a culture of pharmaceutical overkill in regards to patient’s treatment and care, and yet this situation is not about to change whilst profit and big corporations continue to hold political and financial sway over our own public health care systems!
I have regularly and publicly challenged our own NHS in England to review their lack of available treatments for PCS sufferers, to develop treatment pathways similar to those which are available for other types of chronic illness and to provide better patient care and information on a wider scale. To this date I have never received a coherent reply or clear acknowledgement in response other a couple of than vague or short dismissive statements, and excuses similar to the usual ones given to patients. If like me you are facing PCS with the prospect of being treated on our National Health Service then you will be very well aware of what a frustrating and often fruitless journey this truly can be!
Patients have two main choices currently, either to follow the pharmaceutical and psychiatric merry-go-round until they fall off through sheer dizziness and despair OR they can educate themselves and take informed choices as to what is truly best for their recovery and rehabilitation, but still accept some help and intervention from the NHS in a measured and selective way. A third more idealistic way of treatment is still very much a thing of the future here and we need better models for treatment and rehabilitation, such as those devised at the University of Buffalo in the USA, a program designed especially for athletes and sports-people and based on a regime of physical exercise and rehabilitation. This approach combined with cognitive therapies and the consultation of a Neuropsychologist has proven to work. All the leading experts, the likes of Michael A.McCrea, Dr Micky Collins, Dr John J.Leddy and others are setting new benchmarks in terms of research into recovery, effective treatments and new models for diagnosis. We could use these new models throughout the world.
Recovery tends to come in plateaus with regards to PCS, first there appears to be a levelling out of symptoms and a feeling of temporary improvement in certain areas of the sufferers’ symptoms. This is quite a common occurrence with PCS recovery which can be mistaken in the early stages and can be quite frustrating and confusing also. Some sufferers will come through a plateau in their recovery and then suffer a knee-jerk reaction when symptoms recommence, actively seek more medication as a result and then harm their own recovery in doing so.
Simply being aware of such aspects of PCS is invaluable knowledge and as any long-term sufferer will readily tell you; there are no better alternatives to the major recuperative factors of time, rest and an adapted lifestyle to aid rehabilitation which are equally essential and without substitute. If you or your loved one have not been through this before, then the first few weeks and months are potentially the most difficult and frustrating, usually without guidance, common pitfalls can be encountered and mistakes can be made regarding recovery. This is the type of information that you’re not going to find at your average GP or family doctors surgery, also getting referrals to neuropsychology specialists can be difficult or even impossible depending on your status and where you live! What is lovingly and jokingly referred to in the UK as the postcode lottery.
I firmly believe that being forewarned about the unique complications of PCS and getting treated is to be in an advantageous position when it comes to deciding how your own recovery will be determined. By staying positive and becoming educated you can avoid the frustrations that many have encountered through years of going round in circles with the wrong types of treatment, medication and referral.