John Fish B.Sc.
Publishers of Tenby in Wales (UK)
ROWSE LITERARY AGENCY HOW I SURVIVED by Simon Booth
AS AN INMATE OF THE NHS
Synopsis
So then my quest began - to cobble together a personality for myself from the clues I could glean from the barely recognisable visitors that would come to see me. Looking back I suppose I was like a TV detective trying to build up a profile of a suspect... except the suspect was me.
This book details my experiences after waking from a coma of 14 weeks. It features my trials and tribulations attempting to deal with a NHS neurological rehabilitation unit (NRU) and all its shortcomings whilst I attempt to rediscover myself after receiving a serious brain injury. It features my struggle to rebuild my life and personality from blank and the lessons that society can learn from my experience - especially relating to embracing change.
The book begins with my spell in that residential rehab unit
where I begin to regain the use of my mind and body and features my thoughts and observations from the perspective of an insider (with no memory) in a less than perfect system.
I hope that my book serves to chronicle the failings of a well meaning but less than perfect organisation (the NHS). I also hope that as well as taking the reader on an emotional, inspiring (and often humorous) journey I can also help others who are battling against the system to receive the rehab program that they deserve.
I want every reader to begin to develop a perspective that allows them to grasp opportunities in the way that they should. If they manage this then not only will their lives improve and society become richer but I will be victorious in my quest to turn the nightmare of my brain injury into something truly positive.... and if I can turn a hole in my head into a positive.... just imagine what you can do.
Preface
The NRU - How I got there!
A teacher of mine used to say that you should never apologise for being yourself. If you think about it she was right - we don't choose to be who we are - we aren't normally responsible for the personality we end up with. I, however am an exception. Let me explain why ...
When I awoke from my coma I couldn't even remember what language I spoke. I couldn't remember what I looked like. My name sounded vaguely familiar to me so I kind of knew who I was in that sense, but in terms of personality I was a mystery to myself.
So then my quest began - to cobble together a personality for myself from the clues I could glean from the barely recognisable visitors that would come to see me. Looking back I suppose I was like a TV detective trying to build up a profile of a suspect... except the suspect was me.
So where was I? I didn't know this at the time because I had been out cold for 14 weeks but the NRU is the Neurological Rehabilitation Unit in Preston, Lancashire. It was the hospital I found myself in as I came out of my coma on the 13th December 2006. Preston is the nearest city to where my family and myself live. I am not really aware of Preston life or what goes on there at all but it was the nearest rehab place to where I live.
In my childhood years, I was only vaguely aware that Preston existed, and I didn't socialise with any children from Preston schools but I did play junior school football against them.
Apparently, I came out of my coma in mid December on the very day I was being transported by ambulance from another local hospital to the NRU establishment. I had arrived in an English hospital after being flown back from Montpelier, France in mid October to spend the rest of my sojourn from consciousness in my home country. I had my accident in France because I was helping my Father relocate there from Geneva, Switzerland. So my family has told me, I was driving towards my Father's house in Geneva to make the second leg of the delivery journey. On the way back on the main road driving north, I was in a standing traffic jam. A farmer's van joining the main road from a side street lost the use of its brakes and slammed into the side of my hire van. Apparently, the driver and his passenger were ejected from their vehicle through the hole left where their windscreen was milliseconds before. It was me that stayed where I was. Safely in my seat-belt. Safely, that is except for the massive brain injury I sustained and the resulting 14 week coma I endured.
My Half Brother was sitting in the chair directly behind me as he could not sit in the passenger chair due to a previous leg injury. Because he was sat directly behind me he didn't suffer the same impact as I did, so my Father and Brother could move him quite easily from the vehicle. After the accident, I spent 14 weeks in a coma between Montpelier and Blackpool Hospitals whereas my Half Brother spent less than one day in a French Hospital. The distance between us in the accident was just half a meter but in terms of the impact on our lives, it could have been a million miles.
I don't remember any of this of course. It took me almost 3 months to come out of my coma but I can only really remember from the end of February 2007. I don't even remember the sense of despair I must have felt on learning that I had lost the use of most of my human faculties. I couldn't walk for a start and I could hardly speak as I had virtually no control of my Larynx. My Mother and Brother took turns to come and see me in the Rehabilitation Unit and help me remember things that had drained from my brain during the lengthy coma. Still to this day, I meet people whom I think I know but alas, I'm never quite certain of it.
This book is for all people who've suffered a serious brain injury like I did and I are trying to piece their lives together again. I hope that this book will serve as a reference manual to help all brain injured patients realise that there is hope and that change brings opportunity. I hope to describe my experience using the NHS in detail, but from the perspective of a brain injured patient. I will offer suggestions for this country to improve its outlook on many things, not only the Health service, but the wider subject of this nation's finance in general and what we can all do to provide it. For no matter how many improvements you suggest for the Health Service, wider society must function at least as well in order to pay for these services.
I've lived in Britain since I was seven years old and since then I've used the Health Services more than once. Most of my ailments have been minor, from colds and flu to skin rashes but I also as a boy, had more serious bone conditions from which I've had to use the local hospitals. I've found in general that the NHS is a great organisation to have in your life but you have to recover mentally as well as physically from your ailments to get the best out of it. Andrew Marr on the Jonathan Ross show said that our medical treatment is as good as anyone else's in terms of treating emergency trauma but our rehabilitation is sadly lacking. I was lucky (if you can call it that) in that I have a good strong body that was fit and healthy enough to come round and recover from my injuries well. In this country of ours, we have the ability, training and intelligence to design and implement almost all fixes and cures for most medical conditions. We're sadly lacking in one ingredient however that medical services always need no matter where you are in the world, and that is finance. Chapter One
What Happened?
Apparently, I was driving back from St Etienne where my Father's friend's garage was, when I was hit by a farming vehicle filled with rocks. The story is that that vehicle had lost all power to its brakes and presumably couldn't help veering on to the main road and striking my van whilst I was sat in the driver's seat waiting in traffic. I have no recollection of this of course, but I've been told by my family that my Father and Brother helped my Half Brother and me escape the van.
A medical helicopter was called to the accident and I was immediately air-lifted to Montpelier hospital. On the helicopter, my heart stopped twice! The first time the paramedics started it with the help of a defibrillator. The second time my heart stopped it started again by itself to the surprise of the medical team (and conscious me when I woke up months later).
After the accident I've no idea what happened to my hire van as the hire company mysteriously disappeared shortly afterwards (I suspect that they were a dodgy company and didn't want any publicity).The police report was completed in Beziers station but like the hire van company the document also mysteriously disappeared. This was annoying because as I was trying to find out what had happened, the French authorities claimed to have no record of it! I tried to employ a legal firm based it Leeds to search for it on my behalf but they came up with nothing.
Although I was a European citizen, the French Authorities still charge a European national like me a standard board and lodging rate for residing in one of their hospitals. Of course my insurance company were asked to pay for this. Plenty of times a man from Europe rang my Mother to find out whether or not I was considered stable enough to be transferred back to my own town in England. It is obvious now that they didn't want to pay out for anymore costs than they had to and weren't really concerned with the steady progress I was making in a perfectly good hospital , and they had me airlifted from Montpelier airport back home.
Although I was oblivious to all this at the time, I am annoyed about it now, in fact I'm shaking so much with anger I can hardly concentrate. I'm also angry about a story my Mother told me about my hospital stay in Britain. From time to time in my coma I got infected by various viruses and bacteria. One weekend I became very ill on a Sunday and my Mother asked a nurse in the High Dependency Ward if I could be given some antibiotics for my worsening condition. She was told that the hospital needed to examine me to find out exactly the correct antibiotics to give me. She was told that they couldn't give me an antibiotic because the chemist wouldn't be in until Monday. Eventually my Mother convinced them to give me a generic antibiotic which meant the battle against the infection could begin Immediately. I'm grateful to have a Mum like mine. For the first time in my life I'm grateful for her dogged perseverance! This episode illustrates the inflexibility that can be rife in an organisation like the NHS. I've experienced it first hand and so has my Mother. It is quite a frightening thought to think that I could have died just because it was a Sunday!
I've fallen victim to the inflexible and rules based nature of the NHS many times. I have also suffered at the hands of a Health system that has to be financed by insurance (in the case of my experience as a foreign patient in France). I think it is a great thing to receive health care free at the point of delivery but an organisation like the NHS should always bear in mind in a changing world that it must also be able to change.
You and I see images of people in comas and we wonder in our waking mind what the coma victim is dreaming about. I can tell you that I don't remember a single dream or thought from then or even from the weeks after I came round. My Father and the doctor told my Mother that I would come out of my coma after the drugs had been removed, but my coma persisted and I came out of it nearly 14 weeks later.
After I came round it took me weeks and weeks to finally realise what was happening. Most people I spoke to though seemed to think regaining consciousness after that long was just like switching a light bulb back on. Everyone including my family made giant presumptions about me.. They would asked me 'How did you feel when your breathing tubes were taken out?' or 'how are you mentally feeling now?'. I could never realistically answer them because I didn't know myself.
French hospitals are in general very good and I was lucky to have been rushed by helicopter to Montpelier hospital. It just happened to be one of the greatest neurological hospitals in the world (at least the top 10). Apparently, my Mother flew to France and stayed in the same building in St Etienne that I was helping my Father move from. Amusingly, she also said that when she entered Montpelier hospital as a visitor, the hospital itself was so high tech that she felt like she had just been transported to 'Dr Who's TARDIS'. She half expected to see a surgeon with a sonic screwdriver.
I wouldn't wish what has happened to me on anyone else but It did give me a great insight into the difference between British and French hospitals. French hospitals are more elegant on the surface and provide their patients with first rate medical science. British hospitals lack the French charm but are very good themselves and also have first rate technology . I found however, that British hospitals have a plague of arrogance and a culture of resistance to change. I'm hoping that through the course of this book I can provide food for thought help to foster a more helpful mentality towards change and progress in the NHS.
In the few weeks after waking from the coma back in England my mind was full of seemingly unrelated memories of which I could make no sense... and many questions. For instance, for a while I'd forgotten I was English so I started trying to speak in the pigeon French that I was using in the South of France. As nurses and doctors came and spoke to me in my room, I realised that I understood them fully, even some of the Medical Latin words. Friends of mine such as Dean, John and James came to see me and talked about things that had happened to us under the assumption that I would know. I could I knew could just about remember it happening, but I could never remember the details. Alas, that was the state of my mind for at least a year until about the same time that my larynx and my voice started slowly working again. A muddle of memories and my improving voice enabled me to begin to place in time important episodes of my life. This enabled me to begin to piece together some of the plot from the opening acts of my life. But who was the star? Who was the central protagonist? That information was still missing! Who was I and what was I like?
As time passed, through the fog of confusion my mind began ask the questions 'Who am I and why am I here?'. Slowly I began realised that I was a bad tempered oaf and people around including the nurses irritated me. Then I got the obvious questions like 'Do you remember when....' or 'or have you ever seen ......' I never really knew how to answer them or what seemed an appropriate response, so I just blurted out garbage. I wondered to myself if I needed a new personality because the one I seemed to have at the moment didn't seem to be working. Everything at that moment in time seemed to be a reaction. I was never quite sure if my reaction was something I would normally do , or something I did because of changes to my environment. So my personality proceeded on that basis for a while until friends and family reminded me of things I'd said before. These interactions and the responses of my loved ones were enough to give me the slight clues I needed as a hint at the person I used to be. These scraps of information were enough to begin trying to piece together my character.
I almost had to make up some of my personality because I just couldn't remember what I used to be like. And the bits of personality that I could actually remember I didn't like at all. Even now, I 'm still not sure if myself as a person, is the same person as before the accident! The part of memory that makes you who you are (the personality) hasn't gone entirely because of my accident. It has only been subdued and slowly and surely, it is starting to come back to me.