Disclaimer: The views expressed in this blog are my own, and do not necessarily match or represent those of the Hopeworks Foundation, and its members, as a whole.... hence why its only my name on the blog. My views have been formed based on my experiences as someone who lives with a brain injury and must therefore deal with the myriad services and agencies that come with that - not to mention the world at large. As this ride is seldom a smooth one, I will say in advance that I make no apologies for the opinions I hold, nor do I expect to be agreed with by everybody who reads them.  The purpose of this blog is simple - to give others an honest account of what it is like to be on this journey with all its frustrations, highs and lows, and lessons that ultimately are discovered en route. - Kate 17 January 2018 - Fragile flowerFalling at your feet in sheer joy That you were able to receive me like a favorite chair Soaking up the tears if by magic it'll make me Ever warmer even after you're not here Could I be a boat for you a while? Could I stay afloat for you and sail in your smile? Could I be a boat for you And ever gain this weight for you Could I be a boat for you a while? On the 3rd August 2017, my Mum died. She shouldn't have and the sheer pain of that has been like an anchor holding me down in the depths of despair. For the past several months, I have sat with the question of when, and even whether, I could resume my role at Hopeworks. How I could give hope to others when I was bereft of it myself. I am not quite ready to fully embrace the world yet, but I am taking baby steps in the hope that as long as I keep carrying myself forwards, I will again find my way. Thank you for all the kind wishes and support. It has meant a lot to me... 10 June 2016 - The saints are comingThese streets remind me of quicksand When your on it you'll keep goin' down And there's no-one to hold on too And there's no-one to pull you out You keep on falling And no-one can hear you calling If you haven't read it yet, you should. "We can turn crisis around: missioner" is a story in today's Herald, speaking with Chris Farrelly, the new Auckland City Missioner. First off, read it to be in awe of his achievements thus far, and the road that has led him to this appointment. Secondly, read it, to absorb what we all need to absorb - this is not someone else's problem, for someone else to fix. This is something we should all be horrified by, and feel compelled to act on, or at the very least, give a damn about it. Chris says, "The word "crisis".. comes from an old English usage meaning the point at which a patient could either die or live, depending on whether an intervention was successful. "We are at a critical juncture," he says. "My worry is that we could, without knowing it, believe that this is the new norm, and become accepting of it and think, 'Oh, this is what it means to live in Auckland.' So we have to continue to feel very uncomfortable and really shocked by this, so we can as a community do something about it." I am concerned that New Zealanders haven't grasped how dire this situation is. I am concerned that our country has moved so far away from the community structures that were "normal" thirty years ago, that we have become disengaged from the sense of responsibility we should all feel for the welfare of others. I am grossly concerned at the fact that everywhere I look , whether it be TV, newspapers, magazines - all content seems disgustingly focused on money, money and more money. How to make it, how to spend it, how to invest it, how to hoard it, how to capitalise on it, how to get power from it. I appreciate I am an anomaly in many ways. I am different, and I am okay with being different. I am, in fact, happy to be different. And the pursuit of money seems to be just another way that I am different. I have no yearning for money. I don't view it as any more than paper and ink. I appreciate what it can get me in terms of food, shelter, water, heat - for that I am enormously grateful and lucky to have enough to get me by. But that is as far as I care for money. My "job" is the thing I do because I want to give back. The reward is in knowing I have done something meaningful, and substantial; it is not the thing I do so I can waste money on shoes or handbags. Everyone in this country should have enough to get them by - the fact that some have far more than they need to get by, while others go homeless, hungry and cold is shameful. What is however the most disturbing and embarrassing thing to have come out of this latest crisis is the opinions and justifications of those with means listing reasons why they shouldn't have to apologise for having so much while others have so little. The words "we deserve" or "we earned" or "we worked hard" or "we made better choices" are so repugnant and so ignorant, it is almost unbearable. In my lifetime, I have met a lot of people from all backgrounds, cultures, genders, socio-economic backgrounds, geographical locations and I can say with certainty that those at the bottom have "earned" and "worked" just as hard, if not harder, than those at the top and have made the best choices they had available to them in almost all cases. They have lived honest lives, and raised families and done all those things that good citizens do. The only difference I can see of any consistency or note is that those at the top seem to have almost exclusively had better options and opportunities available to them, alongside a huge amount of good luck. Did they work hard? Probably. Did they have to make sacrifices? Probably. Did it pay off? Definitely. Can the same be said of the dairy owner who works 13 hour days, 7 days per week just to barely break even? No. Can the same be said of care workers, who after 20 years of service are still on minimum wage? Definitely not. Can the same be said of the majority of minority groups - the disabled, the mentally ill, those who identify as Maori or Pacific Islander, refugees, etc? Highly, highly unlikely. Because ultimately, although many of the great things about NZ have now gone, most of the ugly things have remained. Racism is as alive and kicking as it always has been, as is intolerance of those things or people we don't understand, or that we irrationally fear. 09 February 2016 - Hero worship A piece of it states, "We have biological potentials for caring about others' welfare, as well as turning against others. Already a day or two after birth infants show a primitive form of empathy; when they hear crying by another infant they begin to cry, but not when they hear a noise of the same intensity." Professor of Psychology Emiritus Ervin Staub goes on to say that the following years are crucial in our development of empathy, with parents constantly pointing out the consequences of their children's behaviour being more likely to raise kinder kids. "Children raised with love and affection, and guided by positive values that stress caring for other people, are likely to develop positive feelings for and inclinations toward human beings". A study by the Carnegie Hero Foundation further identified that those who carried out death-defying heroic acts are more likely to report that they were raised by parents who expected them to help their fellow man. In fact, studies have shown that far from being merely instinctual, as we would like to believe, heroism is likely the result of years of considered selfness acts that have become so habitual that they have evolved from slow, thought-out reactions, to automatic ones. "If you get into the habit of being co-operative, that becomes the default and it will mean that you are more likely to act that way in other contexts. You cultivate the habits of virtue". So what does that mean for your average Joe? Hopefully it means that if you secretly want to be a modern day Superman, then its best not to wait for the big-ticket disasters to present themselves. The fastest, and arguably the best, way to get there is in practising being an everyday hero. Time to say goodbye to talking-the-talk and instead start putting it into practice one good deed at a time. "I hope that the world stops raining; stops turning it’s back on the young. See nobody here is blameless, I hope that we can fix all that we’ve done. I hope we start seeing forever instead of what we can gain in a day. I hope we start seeing each other, cause don’t we all bleed the same? I hope we still have a heartbeat; I hope we don’t turn to stone. At night when you turn the lights off, I hope you don’t cry alone. I hope we stop taking for granted all of the land and all of the sea Call me a dreamer, but I hope I'm not the only one" 2016 is all about going back to the basics of hope. I started Hopeworks as a way to open a conversation; to challenge the status quo; to appeal to the basic humanity that is possible in each and every person.  We have been making slow, but steady strides, with over 22,000 visits to our site this past year, 167 one-on-one clients and many more meetings, referrals, presentations and introductions to the community. We have kept engaging with businesses and my hope is that over time all those profiting from vehicle related sales will come on board and invest some of those profits into education and support that will help prevent further needless accidents and suffering. My pleas for the public to start understanding the impact of road accidents and driver behaviour resulted in a wonderful article by Peter Calder in the NZ Herald last year and it was fascinating, frustrating and uplifting in equal measure to read the public's responses over the year to these issues. We sadly have a long way to go to "win over" those who still see driving as a right, and speeding as an inconsequential activity. But we are in this for the long term. I have also been researching our education systems and the ways in which we have been failing our students and communities through short sighted business thinking. If we are to see every child succeed we need to be honest about what it is that is most important - which to my mind is not found in endless rankings and pandering to those who the system favours. It is time to meaningfully address the purpose of education and the many varied ways in which that transpires. For me that means understanding what pastoral care really is and building a system around that. 2016 has begun for me with a realisation that was quite confronting. My whole life, from childhood onwards, has been marked with times of contemplation and deeper awareness of the world and those who inhabit it. I have always felt a strong pull towards philanthropy, healing and equality. I have always believed that all people must surely have asked many, many times throughout their lives, "why am I here? What is my purpose? How can I help change the world and make it better?"  I was telling our Chairman how I am always living with some form of "moral guilt" about how others - people are animals alike - suffer and the many ways in which that could be alleviated through compromise and generosity that to my mind, I don't see as any major sacrifice. Said Chairman said I would be surprised to know that the majority of people don't actually question the reason why they are here, or think about how they could change the world. It is enough for most to simply live their lives and do what they do. I do appreciate that I am an idealist and probably far down one end of the spectrum but I still found that to be surprising. Because for me, I can't comprehend how any person could feel emotionally or spiritually satisfied, or in any way deeply connected to this world without some form of meaningful engagement with it. I remember standing at my Dad's funeral service and feeling relieved that he had made the kind of impact that meant that students, past and present, colleagues, neighbours and friends overfilled the space. I remember thinking that I hoped one day that I made that kind of a difference. 14 years later, I hope that I am starting to change things, and make a difference. I hope that in my lifetime I do things that matter, and that when it is my time to go, my daughter will know that I made an impact too. 27 October 2015 - Part 1: Seasons of change"The weight, of a simple human emotion, weighs me down. More than the tank ever did. The pain, it's determined and demanding. To ache, but I'm okay... And I don't want to let this go. I don't want to lose control. I just want to see the stars with you And I don't want to say goodbye. Someone tell me why. I just want to see the stars with you"  What brings on nostalgia and waves of the past? The full moon? The close of Winter? Lately, I have been inundated with trips down memory lane which are permeating both my waking and sleeping mind. This morning I was writing my bio, and thought - I wonder how many of us are taken back like that into the past; whether "our" trips are different from those around us. Fundamentally we are already different in that we live with a timeline that reads "before" or "after", in a non-linear way that has been interrupted by some form of tragedy or earthquake moment. Do we thereafter travel between these two times in a bid to knit them together? Or are we just like everyone else, caught in times past? I have found that over these past few years, this topic has come up a fair bit with clients - both those who are cared for, and those who are caring for. This sense that we are somehow not where we are meant to be, coupled with a longing to return to who we once were and what we once did. When I am talking to someone who is despairing of their new role of caregiver, I inevitably get told that it is a role that has tested them to their very limits. Their feelings have often changed from ones of love, happiness and contentment to the darker feelings of anger, hurt, confusion and bitterness when confronted with what can only be described as unreasonable, irrational, or hurtful behaviour from the person who they least expected to be hurt by. And who can blame them for feeling this way? I can't. I know what it is to be on that side of the equation - to feel somewhat taken advantage of, or unappreciated, or just plain offended - and there is little that can be done about it at the time; or at least it feels that way. How can you possibly vent your feelings back at someone who is extremely ill, and who logically has every reason to be angry at the world. But logic isn't emotion, and so those feelings get trapped inside and left to grow and fill more space inside us until it feels like we are being poisoned by someone else's illness. The downward spiral of things unsaid, and things undone, if left unchecked, eventually takes us, and our relationships, down with it. I see all of that, but also the other side. I see the person who has been damaged, who is standing in the middle of a blazing inferno watching their world burn down around them, unable to do anything to stop it; unable to get it under control; unable to get out and fearing for their lives; desperately trying to save those things most precious; overwhelmed by the fires that stand between them and what they love. I have spent years trying to understand how even when you have been on one side, it still feels impossible to get it right when on the other. I lasted seven years as a carer before walking away; the ever present responsibilities and emotional roller-coaster rides having finally burnt me to the ground. In the years since, I have had plenty of time to reflect on those years, and I realised that at the heart of it all is one simple fact - it doesn't matter which side you are ultimately on. In both events, you are losing the person you love to circumstances that you cannot control, let alone necessarily see. Whether that be losing the person you love to a disease or injury; or on the reverse, losing the one you love to exhaustion, confusion and resentment. The end result is the same - pain, hurt, anger, fatigue. So what do I tell people, knowing this is what can, and often does, happen? How do you tread that fine line of honesty and hope?  I tell them to hang in there. I tell them to believe in the person who needs the care, or the person who is providing it. I tell them that without their unconditional love, there is no lifeline; there is no hope. I tell them that understanding what the other is feeling is probably one of the hardest things to try and explain, because it is almost impossible to encapsulate the range of emotions and frustrations that the experience entails. My heart ultimately though cries out for the one who has been injured, the one who is standing in the flames - because they do not get the chance to walk away. Their hell is not one that clocks in only between 9 and 5 each day. It lives with them, it lingers. For those of us living with TBI, their will be a real sense that you are in a second world, a second life that is completely separate from the first. It is not comparable to a mid-life crisis, or an illness that has come and gone - it is like waking up with no idea where you are, how you have gotten there, and in some cases, with no concept of who these people are around you. And that's not to mention the giant void of lost time that you simply cannot fill because the memories of those hours, days, weeks or years have been permanently erased. While I am now 35 and living this life, a part of me is that 16 year old girl who went to sleep happy and is still searching for all that she lost. I have written the next parts to try and explain what that feels like, and how it came to be. It is the piecing together of the fragments I know to be true. 27 October 2015 - Part 2: Like a heart needs a beat"Falling slowly, eyes that know me, And I can't go back. Moods that take me and erase me And I'm painted black... ...Take this sinking boat and point it home, We've still got time. " I'm not a person who normally lives with regret. I live by the ethos that you make the best choices you can every day; you don't lie, you don't cheat and you don't pretend to be anything other than who you are. People tend to either like you, or not. I'm okay with that. My mistakes are my own, as are my successes.  But there is one part of my life that I look back at and I become completely overwhelmed by a sadness and yearning to make things right. It is the fractured bridge between who I was, and who I am; before and after; one world and the next. It is the black hole in my memory; the years when I was lost even to myself; the years when I did damage without even knowing that I was doing it; the years when I hurt the people I loved the most. I have never been happier than I was then; surrounded by people who, to this day, are some of the greatest people I have ever known and who I was incredibly fortunate to have as friends. They were my world and my world, to me, was perfect. I was 16 when the accident happened. On paper, at the speed I was hit, I should have died. I had less than a 1% chance of surviving, but survive I did. I think that for a few weeks, maybe months (?), things were not too bad. Bodily things were not right, but my relationships were still intact and the world still made sense. But then everything changed and the world came crashing down. For me it was sudden; for those around me I am guessing it wasn't. For the next year, maybe more, I was gone. With the exclusion of my physical presence, I was AWOL, lost even to myself. I have no memory of that time, and never have, despite the best attempts of specialists everywhere to resurrect them. I'm sure that there is a scientific explanation; some combination of protective mechanisms and damaged neural networks. Explanations that provide some light, but fail to undo the damage caused.  The cold, hard truth was that when I started to resurface from wherever it was I had gone to, the people I loved more than anything else in the world were either gone already, or were incredibly hurt, confused and angry (and soon after, also gone). Whatever it was that I had been doing, it had destroyed every one of those relationships. Everything I wanted, and everyone I cared for, was suddenly in a world I couldn't reach. The pain that that caused me over the years was unbearable. They were the people for whom I would have done anything; the people who, to me, were home. And I broke it. For me it was like going to sleep one night, happy, then waking up in a courtroom being charged with an offence I couldn't imagine ever committing, with nobody wanting to look me in the eye, let alone be anywhere near me. It was terrifying and soul destroying. Meet me tomorrow night, or any day you want I have no right to wonder just how, or when You know the meaning fits, there's no relief in this I miss my beautiful friend Years later I bumped into two of them and hanging in the air was all those things unsaid; it would be naive to say that there wasn't a sense that an explanation would have been good from me. But, how do you apologise meaningfully for things said and done that you have no memory of, and which no one will explain to you? So here I am, 17 years later, and it remains my biggest regret and my deepest hurt - the things I did in the lost years. And all I can do is continue to put it ''out there'', priority mail to the universe at large, that one day I will see them again; that I might finally know what I did, and finally be given the chance at making it right. And maybe, when I fix that broken bridge, the two worlds will knit back together for me.  I wish that things had have been different back then; that we had been older, our relationships and belief in each other stronger. In hindsight, I should never have been discharged from the hospital that day. Had I been admitted and kept for observation then likely the diagnosis would have been made and my family and friends would have known that something was wrong, and that these kinds of problems might happen. As I said in my previous post, I wish I could have told them to hang in there. I wish I could have told them that without them, there would be no lifeline for me; there would be no hope. If they just stayed with me, and believed in me, I would eventually come back. Down in a hole and I don't know if I can be saved See my heart I decorate it like a grave You don't understand who they thought I was supposed to be Look at me now I'm a man who won't let himself be Down in a hole, feeling so small Down in a hole, losing my soul I'd like to fly, but my wings have been so denied  After I "came back" from the land of the lost, and the above experience took place, I spent a long time in a very dark place. I didn't want to part of this world any more and to be blunt, wished I had never survived the accident. To me, it felt like I had been given a devil's deal - you get to live, but in exchange you are given nothing to live for. I stopped eating, stopped talking, stopped hoping it would get better. I was either at work or in my bedroom; existing. My Dad took on the role of protector, walking me to and from my office, picking me up every lunch time only to watch me stare at my food and never touch it. It was life lived in absolute darkness; devoid of all warmth and light. I don't know what they must have thought. As far as they were aware there was nothing wrong with me; the doctors had told them I'd be fine when I left the hospital and by then it was well over a year later. When nothing seemed to be improving and I still refused to eat, my Dad found a counsellor and told me I had to see her. I had to talk to someone. I had to come back to them. I suppose that was a turning point. I think for the most part I just cried during those sessions; grieving everything I had lost in that year, myself included. I'm not sure I said a lot at all, and once those floodgates had been opened it felt like I would never stop the tears. It was almost worse than being numb. I thought I was going to drown. My happy little pill, take me away Dry my eyes, bring colour to my skies My sweet little pill, take my hunger Light within, numb my skin 1998 - 1999 would turn into a complete contrast to the year before. I started film school and came out of my self-imposed shell, losing myself in the creative process and the 60 hour weeks that filled the minutes of my days.  But as the months went on, my re-awakening quickly turned into a "live like there's no tomorrow" mentality. I had bought a 280Z Fairlady and took to driving it at whatever speed made me feel something. I stopped wearing a seat belt, and began challenging the universe. I wanted to see if I was invincible; whether the debt for having survived was due. And so that's how I lived the next two years; "if you want me, you're going to have to take me down in a ball of flames". To say I had fun would be an understatement. When you believe that you're untouchable, that the rules don't apply to you, it's hard to have anything to complain about. I clocked up thousands of miles, worked hard, played hard, took every opportunity that came my way and capitalised on every one. I spent the best part of two years either working at bars and gigs or partying, on the road with bands, access all areas passes, hanging backstage with the Beastie Boys, at festivals; if there was somewhere I wanted to be, I usually found a way to be there. The music industry and its wild excesses suited me just fine. I wonder sometimes how I survived those two years. I was 18 and completely dis-inhibited. No-one was watching me, monitoring me, stopping me from making potentially bad choices. I may have succeeded in looking like I was in control, but in reality I was totally out of control and loving every minute of it. It wasn't until late 1999, early 2000, that I would eventually grind to a complete stop when I finally accepted the fact that my Dad had been diagnosed with Motor Neurone Disease and didn't have long to live. 27 October 2015 - Part 4: The shadow that lay in waitI see fire, inside the mountain. I see fire, burning the trees. And I see fire, hollowing souls I see fire, blood in the breeze And I hope that you remember me I would find myself holding onto the seats, the hand holds, any purchase I could find in the car that I could hold, white knuckled, waiting for the bad thing to happen. It didn't seem to matter who was driving. It didn't seem to matter even how they were driving. A fear would creep in that was like a shadow.  I couldn't relax. I would get out of a car, my hands and shoulders aching from the death grip I had adopted. Even when I realised I was doing it, I couldn't stop. I couldn't let go. I learnt to cope through avoidance, or Braveheart-style insanity - charging, banner in hand, at the thing that followed me. The nameless, invisible, thing that would keep devouring me and leave me gasping for air. Cars were only the first place it found me. Soon it was infiltrating my dreams and turning the most benign stories into nightmares. It was like Freddy Kruger had found me and had me by the throat. This thing would drive me off cliffs, and roll my car down embankments; have bridges collapse under me and send me hurtling into the depths of rushing rivers; have my car explode into flames and melt the door panels, preventing escape. I would have the same dream over and over and over again, and each time when I finally found an escape, the dream would start again and the way out would be blocked. As the years went on, and I moved to the suburbs to look after my Dad, I just stopped driving for the most part. I didn't really need to, and it wasn't hard to find reasons to stay local. I had a baby, and we just walked, took the bus. The dreams started to become tolerable because they couldn't come true if I wasn't using a car. But the "thing" wasn't done. My dreams started changing. Death by car was replaced by new themes of home invasions; my daughter being kidnapped; me being chased, hunted down. The news started to become a source of new themes - the Columbine killings became a new nightmare scenario re-imagined at my daughter's school; the twin towers became any building with more than two storeys; the London bombings on buses and trains, in rubbish bins - the TV news kept fuelling the inferno and night after night I was subjected to new, raw terror. Sometime around 2005, I was driving home from work on the North-Western motorway. I was in the far right lane, when the car next to me sudden spun out. I watched as it swung toward me, and waited for the impact that would throw me into the concrete barrier. it missed me by inches, and ended up hitting the car in the outside lane instead. I got off at the next exit, called the Police and then drove home, although I don't remember that trip either. It was the event that finally led to my diagnosis of Post-Traumatic Stress Disorder; the "thing" that had been following me all those years starting with my first accident. The diagnosis wouldn't stop the physical manifestations, or the nightmares - but the "thing" finally had a name, and I knew that it could no longer hide in the shadows. For the first time in ten years, I could stop being the hunted, and start being the hunter. And I will stay up through the night Let's be clear, I won't close my eyes And I know that I can survive I walked through fire to save my life You will not break me I'm still fighting for peace 27 August 2015 - Sigh...Have you ever had those days where you just can't even get started? Where you spend almost every hour thinking you wished you had just stayed in bed? Today is one of those days for me. Never a good sign when you have to call your own phone to see what caller ID tells you your phone number is, because you can't remember it to fill out a form. Even worse is not being able to hold a single word in your head long enough to transcribe it from one place to the next with only a half second delay. Days like today get me down.... 12 August 2015 - If it looks like a duck and quacks like a duck...Halls of justice painted green, money talking Power wolves beset your door, hear them stalking Soon you’ll please their appetite, they devour Hammer of justice crushes you, overpower Consequent to the below post, I have been proved right once again.  I predicted that the moment that I won this case and was reinstated, ACC would push me straight back into an assessment to get me pushed back off. I was right. So ... where does that leave those claimants who have spent years in the legal system, and rightfully won in the Courts? And what can be done about? Why are we, as a nation, allowing government agencies to bend the law whichever way they choose with no redress? It brings to mind all those things that government has vowed, hand on heart, to tackle. who can forget the publicity around working wages for carers that still rages on. We were told that this would be addressed but yet, as Peter Calder's article illustrates in today's NZ Herald, we are no further along that we ever have been. It is just white noise. And how about the latest failing of the DHB to apply diligent care and treatment which resulted in yet another death from meningitis; another tragic and needless loss of life. We are spending $26 million on flag contemplation instead of injecting that money into initiatives that could immediately relieve suffering - whether that be remedying poverty, increasing aid, funding shelters or allowing justice. What is going on in New Zealand??? The last election proved that as a majority we tolerate this level of failing; we tolerate injustice; we tolerate being lied to, deceived, mistreated, manipulated. When I talk to people about this government, or any government, I am vehemently assured that individuals will not suffer fools - yet, in the next breath they acknowledge that they voted for a government despite knowing they were being lied to. Which begs the question, why do individuals continue to only discuss matters around the BBQ (rail about them even) but then do absolutely nothing? There are so many ways in which you can fight - many of which do not even require personal contribution beyond signing a petition, or investing in groups who do the lobbying. That is hardly a large commitment in terms of time and effort if one was truly interested in seeing change occur. The problem it seems is that individuals are not yet affected enough to care. Until it happens to them on an individual level, and their lives are destroyed, they lack the will to do anything other than watch others suffer. How do we change that New Zealand??!! 02 August 2015 - Well, hello there...So, all hail the underdogs, all hail the new kids All hail the outlaws, Spielbergs and Kubricks It's our time to make a move, it's our time to make amends It's our time to break the rules, let's begin... It is entirely possible that my organisation skills are not always the best - hence the lack of posts lately... Yet - there is so much to talk about! The biggest news by far is my recent win in the Courts. The culmination of 17 years of fighting ACC - my own personal David and Goliath duel. I stuck it out, I won, and for that I am enormously proud.  I have written previously about ACC and the tactics which I highly disapprove of in their fight to rid their books of brain injury clients - the tail enders. As you know, I am a passionate advocate for justice and for fairness, and this arena is where I find myself fighting for others the most. We have a pretty sound strategy now in how we approach ACC for clients, which is based on what I have learnt from my many, many years in this system of crazy mirrors and sleight of hand. Our bottom line is that you fight fair, and you fight hard and you believe in yourself 100% while surrounding yourself with people who back you. it is that last part that is the hardest sadly, as so many professionals are either in the moneyed-pockets of ACC or simply refuse to question ACC and whether what they are doing is right or wrong. Both I find appalling when we are talking about those who have a loyalty and responsibility to their patients. ACC is an insurance company - fullstop. They are not above the law, they are not at all well versed in medicine, and they are most certainly not well versed in the difficulties and realities faced by claimants. They are a joke, and a large one at that. The only way to fix ACC is to fire everyone in it and start again with input from the people who actually use it. Under this government all roads lead to corruption - whether that is bonus payments for the case managers who exit the most claimants, or using ACC profits in the budget figures (without actually telling the public that that's where they came from). Anyway - more importantly - here is the official decision of the Courts and an overview of the day that I met the most incredible woman, Judge Henare, who has more compassion, humility and kindness than most people you will ever meet. It was a great honour, and a great pleasure. She offered me the words I had waited almost two decades to hear. Judge Henare, thank you. Johns v Accident Compensation Corporation [2015] NZACC 149 (16 June 2015) 04 March 2015 - Standing up to be countedSo...I have moved on from my compassion fatigue slump and am back in business. I realise that these slumps will happen and like everything else, you just have to breathe through it, accept it for what it is, then slowly get back on your feet. And so here I am. And by golly, here all of you are too. The Hopeworks Network is becoming a formidable beast with well over 3,000 individuals, families, carers, professionals, medical personnel, business leaders, emergency service workers - you name it, we seem to have a collective of each! This is in addition to our Partner Network and individual clients who number is the hundreds. We are officially building in strength, power and unity. Why is this important?  One of the goals of Hopeworks has always been to work collaboratively to fix what is broken in areas in which many are affected. As sole voices, New Zealanders rarely get traction on their own; but when hundreds, if not thousands, band together suddenly people have to listen. And I think that is fundamental to our success in NZ of getting disability issues heard and addressed. It is crucial when dealing with government funded organisations, and in potentially having the systems we live with re-worked to be for the advantage of the public, and not the coffers of the shareholders. Society needs to band together as a cohesive whole, and genuinely care about the outcomes for those who are affected. It is no small number to begin with, and will only increase as life expectancy gets longer, major diseases are slowed down, and the population increases. Everyone will at some stage in their life be affected by one of these conditions, either directly or indirectly. Since I got my drivers license 17 years ago, some 620,000 people have sustained new brain injuries. That is around 1 in every 6 New Zealanders. It is time we rose up together to achieve what has always been possible - compassionate healthcare, fair treatment and the upholding of justice within our government agencies, and a tolerant and educated public who can fully appreciate what these fellow countrymen are suffering through. And lastly, my biggest hope, that the public care about the outcomes. 13 February 2015 - A-tishoo a-tishoo, we all fall downI used to dream I used to glance beyond the stars Now I don't know where we are Although I know we've drifted far So - I am suffering from a serious case of compassion fatigue. Last night I went to bed angry, and despite an 8 hour deep sleep reprieve, I was still angry when I got up and spent most of the morning biting back tears. This past month, as I have taken a badly needed rest, I have been making notes, and researching and generally looking at the world around me trying to work out the plan for 2015 and which direction Hopeworks should go in - what are our priorities. Do you know what I found out? There are too many priorities. Society is broken. And nobody really wants to fix it. They will talk about it a lot, but the majority are unaffected and so the need is lost on them. All our negative statistics, and our failings as a country, are still there - and still un-addressed. And I can tell you why that made me so mad. And it is simple. We are a country not plagued by war, not suffering for lack of water, or natural resources, not suffering from a lack of access to education or medical care. We are spoilt for choice really as far as countries go. We have land, and we have beaches, and we have a relatively small population to manage. Our basic needs of being fed, being housed, being clothed, and being well therefore should be so easy to meet. So easy.  But we are failing at it - and failing badly. All around me, geographically, I see the clear signs of money and the things that money buys. Things that are unimportant, things that are more than superfluous to requirements - that are luxuries in every sense of the word. But the language, and the conviction of the narrator, who has access to everything, tells a different story. I hear that little Johnnie "needs" this and that, that Mr and Mrs just "couldn't' live without" this or that, that there was really "no choice but to buy" something when it was that cheap (it wasn't cheap in any sense of the word), that it was "devastating" that little Daisy missed out on that birthday party because of cashes with other high end activities, that little miss or mister just looked so sad when they said no that they "had to" get or do whatever it was that was so important - you get my point. And I realise in the midst of this, when I am biting my tongue to the point that it wants to bleed - that they truly believe that there is an element of necessity and entitlement to these things that they want - that the compromise of simply not having it immediately, or ever, is deeply wounding and unfair in some way. That their lives would be empty or unfulfilled without the magic and sparkle that that kind of wealth can bring. That what they already have, and that so many wish they had, is not enough and that gratitude for it would be therefore misplaced. And I wonder - when did this happen to them, and how? When did they stop seeing the run down houses over the hill, the threadbare clothes and worn out shoes on kids walking home from school, the hunger clear on their faces, the deep lines and dark shadows around the eyes of their care staff, their shopkeepers, their garbage-men. When did they stop gasping out loud at the stories on the news, the statistics in the newspaper, the squalid conditions in their cities? When did they stop shedding tears involuntarily over the suicides, the cries for help, the abused and the helpless? When did their bodies become immune to the sadness, but hyper responsive to the sounds of text messages, tweets and pokes? When did people stop looking at the person talking to them, instead staring at their own phone instead - was there an internal explanation as to why this was not deeply rude or did they just start believing they were more important? When did this city, this country, decide that the worlds problems were not their own? That every problem was someone else's to deal with? When did this country start believing that if they can't see the wreckage that it doesn't exist? I am starting to feel like Alice in Wonderland. Wondering whether there is something seriously wrong with me that I should care so much about people that I have never met, will likely never meet. That I look out my window and want to scream in frustration and hopelessness - to challenge the numb to feel something.  Maybe it is just me. I lack the ability to see the lightness, the funny side, of poverty, inequality, abuse and harm. Maybe I need to shake that voice in my head that constantly reminds me, "Unless someone like you cares a whole awful lot...." I know I have grown tired of fighting the rising tide of apathy and trying to make sense of this new world we have created where money is king, and empathy an old fashioned idea. On days like today, I find myself wishing with all my heart that I could bring back my sister and my Dad and weep in their arms. They understood pain and suffering, in the ways that only those who have felt it first hand know. They understood why it hurt me to see it and to not be able to fix it, not be able to make it right. And just maybe they would have joined the fight with me... 24 January 2015 - Seek and you shall findSo, following my last post, I was contacted by Peter Calder, who writes a weekly observational column about things that peak his interest in the news. It appeared that I had peaked his interest with my views on speeding. He came out the following week and interviewed me, and was the highest calibre of gentleman. We talked at some length about the issues surrounding speeding and how I had arrived at my own rather strong views on the matter. It was a lovely experience, I have to say. The story came out this past Wednesday, 20th January. I was somewhat prepared for some opposition to my views, and had already copped some flak from the public for my previous letter the editor. But I will never quite wrap my head around the way that some people think; probably fair to say they will never quite understand how I think either. But for me it points to a larger issue, which I have alluded to often through my blogs and meetings with members of the public and private business. As a country, we simply do not, or will not, confront what is in front of us. We deny or minimise our societal flaws in spectacular fashion on an almost daily basis, justifying all manner of ills in more and more ridiculous and short sighted ways. Until such time as we can own up to our individual responsibilities, in the way that we were taught to until fairly recently, then we are going to fall further and further behind in terms of having an equal, respectful, fair, just and open society. 5 January 2015 - If you're not a cop, don't pretend you know betterSo - New Police Commissioner Mike Bush wrote a great article about the Police force and how they are out there keeping us kiwis safe. I think we should all read it, and say a small thanks to them before I divert with my latest diatribe:  "New Zealand's police work 24/7 to keep our communities safe. The public rightly has high expectations of us and in 2014 we have again shown their faith is well-placed. Major events include several operations targeting the methamphetamine trade and the organised criminal gangs that run it. We have hit these gangs where it hurts, seizing millions of dollars in cash and drugs and confiscating millions more in assets. We'll do more of the same this year. Other highlights include our staff supporting the royal tour in April and sending a contingent to assist with the G20 summit in Brisbane - our biggest overseas deployment. We also made deployments supporting events in Samoa and Solomon Islands. In August, police took a big step forward in repairing relations with Tuhoe by apologising for some of our actions during the termination of Operation Eight in 2007. We also completed a meticulous review of the original investigation into the 1970 Crewe murders and apologised to Rochelle Crewe after shortcomings were identified. Behind the scenes, we have transformed the way we work. We have put preventing crime and meeting the needs of victims at the forefront of everything police do, with outstanding results. These include a 20.1 per cent reduction in recorded crime in the past five years, meaning tens of thousands of people were spared the trauma of becoming victims. That's what New Zealand Police is all about. And we have revolutionised the way our people work by issuing our frontline with smartphones and tablets loaded with customised apps to allow them to spend more time in their communities and less time at the office doing paperwork. On the streets is where they can make the most difference. Police also refreshed the core values that guide everything we do, adding empathy and valuing diversity to our existing values of respect, integrity, professionalism and commitment to Maori and the Treaty. Most importantly, we have retained the very high levels of public trust and confidence - a top priority for me as commissioner. Building on our successes to keep our communities safe will be priorities for police in 2015. Christmas had extra meaning for me as Boxing Day was the 10th anniversary of the 2004 tsunami. As the police liaison officer in Thailand, I was the first New Zealand officer to arrive in Phuket, where more than 5000 people perished. On Boxing Day, I represented New Zealand at the commemorations in Thailand. It's important to mark tragedies like these because they remind us that life is precious, so we should all look after each other. Christmas reminds us of that, too. That's why we want everyone to take care on the roads over the holidays. While most of the country has their holiday break, police staff will be working around the clock to keep you safe. On that note, on behalf of New Zealand Police, the very best for the festive season and here's wishing you all a happy new year." Great article huh? The boys in blue are more than doing their job, going beyond the call of duty and extending their promises to us as to how they treat us. Bravo!! Then you get this kind of article:  "AA's speed plea to traffic police: 'Target high-risk roads not safer motorways' Almost half of all tickets from speeding cameras are given out in Auckland, prompting the Automobile Association to urge the police to ease up on targeting low-level speedsters on Auckland motorways and instead focus on higher-risk roads around the country. The cameras and a decision to lower, over holiday breaks, the usual 4km/h tolerance - and this season even to scrap it - have resulted in a boom in tickets. Twenty-six thousand more were issued each month last year on average than in 2009. That is despite police saying average speeds have dropped. Last year, an average of 82,000 speeding tickets were issued each month, compared to 56,000 five years before. Much of the increase is down to the crackdown on low-level speeding over holiday periods. Lower speeds and fewer drink-driving offences have also resulted in a drop in traffic-fine revenue. Last year, the figure was $71 million - the lowest in 15 years and down from a high of $105 million in 2004. Most of that was from speeding fines. Road policing chief Assistant Commissioner Dave Cliff denied staff were using speed cameras to gather revenue, saying they did not benefit from the money raised; it went into the Government's coffers. It also cost the police to process fines - money they did not recoup from the proceeds. "Police don't measure success by fines, but by fewer road deaths, fewer injuries and fewer victims, and in 2013 we saw the lowest road toll for 60 years," Mr Cliff said. AA spokesman Mike Noon questioned whether focusing on drivers doing just over the limit on relatively safe urban motorways was the best strategy. "Focusing on low-level speeding on the motorways, we think, is maybe not very beneficial. We'd prefer more focus on higher-risk areas, such as people speeding on State Highway 27 or between Turangi and Taupo. "We get a bit concerned if there's too much focus on low-speed tolerances on motorways, particularly since some of those motorways, we think, may move to 110km/h, to reflect the safety of them." The impact of speed cameras on New Zealand roads is stark. The number of speeding offences detected by camera has almost doubled since 2009, from 330,000 to 615,000 last year. In 2009, about half of all speeding tickets were from cameras; the rest were issued by officers. In 2014, the cameras accounted for 70 per cent of all speeding tickets - and almost half of them were in Auckland. By comparison, Auckland accounted for only about 27 per cent of tickets issued by police nationwide. Mr Cliff said while more people were being caught speeding, they were not speeding by as much. Open-road mean speeds had dropped from 102.3km/h in 1996 to 95.7km/h in 2013. Urban speeds had also dropped, from 56.5km/h in 1996 to 51.7km/h in 2013. The lower threshold for speeding over holiday periods compared to normal times had resulted in a 36 per cent reduction in those speeding up to 10km/h above the limit and a 45 per cent reduction above 10km/h." To which I responded (and which was published in the NZ herald today): "I was really disappointed to read Mike Noon's criticism of Police in the article "AA's speed plea to traffic police: 'Target high-risk roads not safer motorways'" To suggest that any stretch of road is "relatively safe" and therefore needs less focus is unbelievably naive. Road accidents can, and do, happen everywhere - like guns, it usually comes down to who is operating the weapon, and at 100kph or more, a car is a very dangerous weapon indeed. Why on earth, then, would any agency who truly has road safety as a primary concern advocate against a Police stance that enforces a set speed limit, or targets a geographical area with the highest density of traffic? Is it also not an oxymoron to say that there needs to be more focus on high risk speeding but equally that there should be an increase in speed limits to 110kph? I find it a bit worrying that one would fail the AA website road code test if they were to enter 104kph as the open road speed limit, yet Mr Noon sees the enforcing of this rule as "maybe not very beneficial"? How is that different to being "just a little" over the drink drive limit - surely being over the limit, is being over the limit, no? If you were to look at the latest available 'Casualties and crashes' statistics, "lost control" 42%, "too fast for conditions" 31% and "alcohol/drugs"30% were by far the greatest contributors to road accidents - and they are not limited to high risk stretches of motorway. Park on my 50kph suburban street any night of the week and you can see true ignorance in action, as speeds of up to 100kph are reached on what has become a makeshift racetrack. Therefore, perhaps we should ponder on what the AA is doing to reverse the most critical factors of speed and alcohol, if they feel that the Police are doing it all wrong? I would invite you, Mr Noon, to spend the day with me some time so that you can see first-hand what it looks like to be a permanently disabled crash survivor which happened at a lower speed than that which you deem to be insignificant. Because until you can understand how insensitive your comments are to those whose lives have been derailed, or you can appreciate the NZ Road Police who are actually out there making a very notable difference, then you will continue to be a back-seat-driver in the preventable tragedies that happen on our roads." What makes any agency or any individual believe: 1. That they are special and therefore should have special rules which apply to them when on the roads 2. That they know more than the agency that has to scrape the bodies off the road, does the majority of road safety education, and has the data, statistics and experience to know what is best 3. That the Road Code is only relevant in order to get one's license and thereafter is open to an individual's personal interpretation 4. That the maximum speed limit - in this case 100kph - is merely a guideline and not a maximum speed limit, and 5. That it is their right in life to be able to drive a vehicle (aka a weapon) and to use NZ roads. Although the entire opinion of AA's Mike Noon irritated me, what perhaps made me shake my head in the most disbelief was the statement "We'd prefer more focus on higher-risk areas, such as people speeding on State Highway 27 or between Turangi and Taupo." If that stretch of motorway is reliant on a police presence in order to be safe, then we are in big trouble!! Of course we could do something sensible like lower the speed limits in that area - but then the public and the AA would be up in arms about how the Police are ruining their fun and their right to drive fast wherever one pleases. How absolutely bonkers! How are the Police ever going to be in the right when the public can't pull their heads out of the sand long enough to realise that you simply cannot have it both ways. You cannot have safety and speed, you cannot fight to have the speed limits increased to 110kph and then complain that the police aren't there to monitor those areas, you cannot tackle high risk roads without lowering the speed limits that cause the accidents - you just cannot mix hypocrisy with a wish to reduce the road toll. Wake up New Zealanders!!! For all those who say that they simply cannot drive at 100kph and should be given a buffer zone in which they can choose their preferred speed, perhaps you shouldn't be on the road if you have so little ability and self control. If you were to drink, with the intention of driving home, would you quickly load up to the upper limit, and then hope that you can stay within that fine line of micrograms before you get in your car? Of course not (or at least I sincerely hope not!). You would apply a little self control and ensure that you are not putting yourself in such a precarious position. The Police have no time, and so they shouldn't, for people like that who insist on using stupid logic to explain their way out when they are over the limit. Likewise, it doesn't' take a genius to figure out that if you are dead set on driving at 100kph then you are leaving yourself zero room for movement. If you instead aimed to drive at 95kph, then you leave yourself some options and don't need to spend every second looking at your speedo and getting annoyed at the Police for doing their job and enforcing the rules that you so diligently learned in order to get your license in the first place. I will never understand why people who are so quick to criticise the Police and the rules of the road can't see that it is a privilege and responsibility to be on the road, and not a god given right... ...If you don't like the rules, get the hell off the road and complain to someone who likes the sound of self-pity. 3 January 2015 - Will 2015 be the Groundhog year?I am an arms dealer, fitting you with weapons in the form of words And don't really care which side wins, as long as the room keeps singing That's just the business I'm in Happy 2015 one and all, and we are off to a cracking start aren't we? The first three pages of the paper each day have so far been dominated with tales of idiocy and tragedies brought on largely by our society's culture of celebrating alcohol. I remember 20 years ago, when we glamorised smoking and used tobacco companies as the ambassadors for things like the Benson & Hedges Fashion week. Here we are twenty years later condemning smokers like they are lepers and punishing those addictions we created through ridiculous taxes as if for some reason society and media played no part whatsoever in creating those addictions. I have no issue whatsoever in focussing attention on stopping teenagers from starting to smoke, but I have a major bug bear over demonising one section of society the way we are doing now.  Will it be the same with drinkers in twenty years time? Perhaps we will be persecuting those that are addicted to sugar or instant kiwi tickets - even though we put it in their hands. What is so different about alcohol that we do nothing about it that would discourage young drinkers from starting, or that would impose limits on those who consume to excess? Why do we not remove alcohol from supermarkets, or insist that it is hidden from view, or why not put higher taxes on it each year? The greatest deterrent surely would be to impose a zero tolerance, zero microgram alcohol limit on everyone, with an immediate removal of one's license if caught drink driving. And secondly make alcohol more expensive so it is a luxury item that cannot be afforded on a daily, or large scale, basis. Why do we not do this now? Two reasons I believe - firstly it makes a government party unpopular come election time, and secondly, enough cabinet ministers are presumably drinkers so they wouldn't want to be punished by their own laws. A guess maybe, but I'd say a reasonably accurate one too. Why else would we sit on our hands while we know the horrifying statistics that beleaguer our country. Here's some eye opening ones from our fair country as well as some overseas research findings:
If you knew all of that, and you were running this country, and you had any inclination whatsoever to put public safety as a top priority - would you not do something about alcohol? Would you not put your popularity on the back seat if you actually cared about New Zealanders beyond getting their vote? Hello National??? Can you hear me?? 4 November 2014 - The worst kinds of abuseYesterday I witnessed one of the worst things I have ever seen; the kind of thing that makes you realise how absolutely disgusting, unethical and inhumane this human species can be. The kind of thing that makes your whole body scream with a soul deep pain and grief at the sheer waste of it all. (I appreciate not everyone is a committed vegetarian, pacifist, animal lover like me but still....) On the way to a meeting we stopped at a cafe so I could rest. As we went to sit at a table in the back courtyard, at my feet was a baby rat which at first I took to be dead. That in itself made me sad. But what followed was twenty minutes of watching this tiny creature writhe around in absolute agony; unable to hold its head still or straight; unable to stand on its little legs - its only way of moving being to half drag and half throw its tiny weight in the direction it was trying to go. All I could feel in my body was a deep deep rage and an overwhelming sense of remorse that I should be part of a species that can place more weight on the business of making money than on the life of another who's only sin was to be born. I have never been so deeply sorry and this I repeated over and over to this tiny animal, being ripped apart internally by a poison that we created with the sole intention to hurt and kill. How can we justify this? How can we even pretend that it is anything other than what it is - an act of cruelty, hatred and ignorance? I'm sure that some would argue that it's the 'right' of the business, and that rats can harm and all that other rubbish - but the reality is that catch and release is not very hard and far less time consuming than laying rat poison. The relevance to Hopeworks might seem a bit vague to those reading this but when I awoke this morning I remembered an article in the Herald about the way we treat those who can't speak for themselves , and how we abuse that when it suits our purposes. Entitled "Drugs tested on critically ill, coma patients" it was the latest of many historical articles on unethical practices of testing unproven drugs on patients who were not able to provide consent. The conditions of the patients have ranged from coma, intubations, or because they were either critically ill or mentally incompetent - schizophrenic patients were disproportionally abused in this manner in the UK at one point. Excerpts from this article read "Thousands of critically ill or unconscious patients have been enrolled without their consent in clinical trials to test treatments in New Zealand hospitals. The latest case involves a proposed trial at the Auckland and Christchurch hospitals of a new antibiotic. In a global trial, sponsored by United States-based Cubist Pharmaceuticals, intensive care specialists want to see if the new medicine is as good as the standard antibiotic. The 20 trial participants will be patients who have picked up pneumonia in hospital while on mechanical ventilation for breathing. They will be legally unable to give consent because they will be fully unconscious, sedated or have a breathing tube in their throat which will prevent them from speaking. A health and disability ethics committee, chaired by Brian Fergus, has provisionally approved the trial after initially deferring a ruling until it had received advice from Crown Law on the legal basis for enrolling unconscious patients into research trials. Dr Shay McGuinness, Auckland cardiothoracic intensive care specialist, told the committee that as in similar applications approved by ethics committees, the aim was to obtain "assent from relatives and then retrospective consent" from patients when they had recovered, according to minutes of a March meeting. A medical law expert has questioned whether researchers can lawfully rely on the claim that enrolling unconscious patients into a drug trial is in their best interests. Associate Professor Joanna Manning, of Auckland University, said: "It's questionable whether the researcher could rely on ... the code to proceed to trial on unconscious patients because the question mark is over whether giving the person this medication would be in their best interests, when the purpose of the trial is only to prove it is not inferior to current standard care." The Code of Health and Disability Services Consumers' Rights permits patients who are not legally competent to give informed consent - and for whom no one is available who is entitled to consent on their behalf - to be treated and involved in research as long as this is in the person's best interests." It is again worth noting that this article was published in 2014 - this year. The above excerpts show without a doubt that rather than being deployed as a life saving measure, this is a pre-meditated idea which is just waiting upon patients/victims to arrive with the exact condition they are hoping for (namely being unable to give consent) so that they can fulfil the wishes of a multi billion dollar drug company. And worse still, they have acknowledged that the purpose is to determine whether the new drug is inferior - not to save a life. (In fact you could argue that if the drug was inferior, it would do more harm than good in the patient's fight against pneumonia.)  I would be fuming mad if I woke to find out that trials had been run on me without my consent. How many issues could that raise within a society that has so many different cultural, religious and ethical beliefs that do not condone such things that could be ignored by these doctors for the purposes of helping to bankroll a drug company. Just last week there was a story on the news about a patient who had procedures done that were against his beliefs, or he thought them to be, and his family/friends opened fire on the hospital in question. This kind of 'medicine' - if you can call it that when the are going against their own motto of "to harm none" - is completely unethical and serves only to remind me of the negative ways in which our societies are falling apart. Specifically when groups of people believe that they know better than other groups, and act accordingly. You cannot for a second claim you are doing what is in another's best interests when you know absolutely nothing about that person or their beliefs, and relying on finding out retrospectively is appallingly unethical in my books. And then of course there is the absolutely horrific decision to allow testing of legal highs on animals. Party drugs. Party drugs. Party drugs. Yes, please absorb those words and what they mean. The below practices are apparently acceptable in New Zealand for the purposes of medical "research". Someone has determined that abuse of animals is okay for the greater good of mankind. Who has decided that we are more important than any other sentient species who feel pain, who experience terror. These creatures, who have done nothing wrong, are subjected to the worst kinds of hell that we can subject. We feel sick when we hear about the horrible effects of chemotherapy on another human with all the associated nausea, vomiting, hair loss, pain and helplessness that comes with that. But yet we seem to feel very little of that, in comparison, when it is a beagle who is bleeding from the eyes, or a mouse who has had an ear artificially grown out of its back, or when we repeatedly electrocute small animals to see whether there is a reaction. How can we justify this? They say that its in everyone's best interests - but it's not. It is not in the best  interests of those who are abused in the process; it is not in the best interests of those who have a strong moral objection to that kind of torture; and it is not in the best interests of science to claim that drug induced comas and seizures are for the better good when the trial is testing a new shade of lipstick. If these drugs were so "good" for us, then why can't they be tested on the scientists who have created them, the doctors that espouse their value or the pharmaceutical company salesmen who have such a high financial stake in them. My guess is that they don't specifically because they know that the drugs are not ready, they are not proven, and that the effects will rip them asunder until they are begging for mercy. But yet our government says its okay and we go along with it. So, what makes the average person confident about what a medical professional might choose to do to you in hospital when you cannot give your consent, and they decide to take advantage of that? The Cartwright inquiry was meant to put an end to patient abuse, but the threshold has been left so low that any garbage can be used to justify a doctor's actions so long as it meets the ridiculously vague research criteria set. Who will fight for you if you are one of those unlucky 20 pneumonia patients unconscious and unable to give consent? Who will fight for the animals being mutilated for our own ends? Who will care enough to do something to stop this? 28 October 2014 - Who owns your information?As you have probably already gathered, I am quite passionate about ensuring that those with brain injuries and neurological conditions are treated fairly and are not taken advantage of in any way by insurance agencies and other departments. It is my view that we already have a hard enough time just coping with our injuries, without further disruption and road blocks being added to that burden. I am also well aware of the tendencies of agencies to make misleading statements about what clients are entitled to, or not. We have recently been involved in one such case. A client of ours was advised by a contracted provider that it was the position of the government agency that as they paid for the reports, they 'owned' them and subsequently this provider was to disclose them only to the contracting agency. It was then up to them to make available copies for clients. This is completely illegal and it is my hope that this practice will stop immediately. In brief, under Rule 6 of the Health Information Privacy Code, any agency who holds health information about an individual is obligated by law to release that information when it is requested. Who pays for the report is completely irrelevant and does not have any bearing on an individual's right to access their own information. There are some exceptions to this which are listed in the Privacy Act whereby health information can be withheld (Sections 27 - 29 below) or transferred (Section 39 below) but they are very much not applicable to the majority of people most providers would be seeing - matters of national security, trade secrets, imminent harm to self, etc. A contracting agency's position that a GP could potentially have a copy, but not the individual, further goes against Section 39 which states that the transfer can be made where that person (the GP) is "more closely connected with the functions or activities of another agency" - in this case a neurologist - than the individual. That is clearly not the case, and there would be very limited situations where that would be found - i.e. results indicating severe risk of harm to self or others might be one such scenario. The Privacy Commissioner could not find any reason, based on the facts that I relaid, where the contracting agency was working in accordance with the Privacy legislation. Lastly, if a client requests information from a provider, and the contracting agency take the position that the client cannot have it, then they need to provide the client with a reason (Section 27-29 of the Privacy Act) as to why they cannot have it. They cannot simply say we own it, or because we say so. That reason needs to be spelled out and have basis in law. The Health Information Privacy Code  Rule 6: Access to Personal Health Information (1) Where a health agency holds health information in such a way that it can readily be retrieved, the individual concerned is entitled: (a) to obtain from the agency confirmation of whether or not the agency holds such health information; and (b) to have access to that health information. (2) Where, in accordance with paragraph (1)(b), an individual is given access to health information, the individual must be advised that, under rule 7, the individual may request the correction of that information. (3) The application of this rule is subject to: (a) Part 4 of the Act (which sets out reasons for withholding information); (b) Part 5 of the Act (which sets out procedural provisions relating to access to information); and (c) clause 6 (which concerns charges). (4) This rule applies to health information obtained before or after the commencement of this code. Note: This rule is subject to provisions in enactments which authorise or require personal information to be made available or Acts which prohibit, restrict, or regulate the availability of personal information - Privacy Act, section 7(1) and (2). Under section 7(3) it is also subject to certain regulations which prohibit, restrict or regulate the availability of personal information. Privacy Act Section 27: Security, defence, international relations, etc (1)An agency may refuse to disclose any information requested pursuant to principle 6 if the disclosure of the information would be likely— (a)to prejudice the security or defence of New Zealand or the international relations of the Government of New Zealand; or (b)to prejudice the entrusting of information to the Government of New Zealand on a basis of confidence by— (i)the Government of any other country or any agency of such a Government; or (ii)any international organisation; or (c)to prejudice the maintenance of the law, including the prevention, investigation, and detection of offences, and the right to a fair trial; or (d)to endanger the safety of any individual. (2)An agency may refuse to disclose any information requested pursuant to principle 6 if the disclosure of the information would be likely— (a)to prejudice the security or defence of— (i)the self-governing State of the Cook Islands; or (ii)the self-governing State of Niue; or (iii)Tokelau; or (iv)the Ross Dependency; or (b)to prejudice relations between any of the Governments of— (i)New Zealand: (ii)the self-governing State of the Cook Islands: (iii)the self-governing State of Niue; or (c)to prejudice the international relations of the Governments of— (i)the self-governing State of the Cook Islands; or (ii)the self-governing State of Niue. Section 28: Trade secrets (1)Subject to subsection (2), an agency may refuse to disclose any information requested pursuant to principle 6 if the withholding of the information is necessary to protect information where the making available of the information— (a)would disclose a trade secret; or (b)would be likely unreasonably to prejudice the commercial position of the person who supplied or who is the subject of the information. (2)Information may not be withheld under subsection (1) if, in the circumstances of the particular case, the withholding of that information is outweighed by other considerations which render it desirable, in the public interest, to make the information available. Section 29: Other reasons for refusal of requests (1)An agency may refuse to disclose any information requested pursuant to principle 6 if— (a)the disclosure of the information would involve the unwarranted disclosure of the affairs of another individual or of a deceased individual; or (b)the disclosure of the information or of information identifying the person who supplied it, being evaluative material, would breach an express or implied promise— (i)which was made to the person who supplied the information; and (ii)which was to the effect that the information or the identity of the person who supplied it or both would be held in confidence; or (c)after consultation undertaken (where practicable) by or on behalf of the agency with an individual's medical practitioner, the agency is satisfied that— (i)the information relates to that individual; and (ii)the disclosure of the information (being information that relates to the physical or mental health of the individual who requested it) would be likely to prejudice the physical or mental health of that individual; or (d)in the case of an individual under the age of 16, the disclosure of that information would be contrary to that individual's interests; or (e)the disclosure of that information (being information in respect of an individual who has been convicted of an offence or is or has been detained in custody) would be likely to prejudice the safe custody or the rehabilitation of that individual; or (f)the disclosure of the information would breach legal professional privilege; or (g)in the case of a request made to Radio New Zealand Limited or Television New Zealand Limited, the disclosure of the information would be likely to reveal the source of information of a bona fide news media journalist and either— (i)the information is subject to an obligation of confidence; or (ii)the disclosure of the information would be likely to prejudice the supply of similar information, or information from the same source; or (h)the disclosure of the information, being information contained in material placed in any library or museum or archive, would breach a condition subject to which that material was so placed; or (i)the disclosure of the information would constitute contempt of court or of the House of Representatives; or (ia)the request is made by a defendant or a defendant's agent and is— (i)for information that could be sought by the defendant under the Criminal Disclosure Act 2008; or (ii)for information that could be sought by the defendant under that Act and that has been disclosed to, or withheld from, the defendant under that Act; or (j)the request is frivolous or vexatious, or the information requested is trivial. (2)An agency may refuse a request made pursuant to principle 6 if— (a)the information requested is not readily retrievable; or (b)the information requested does not exist or cannot be found; or (c)the information requested is not held by the agency and the person dealing with the request has no grounds for believing that the information is either— (i)held by another agency; or (ii)connected more closely with the functions or activities of another agency. (3)For the purposes of subsection (1)(b), the term evaluative material means evaluative or opinion material compiled solely— (a)for the purpose of determining the suitability, eligibility, or qualifications of the individual to whom the material relates— (i)for employment or for appointment to office; or (ii)for promotion in employment or office or for continuance in employment or office; or (iii)for removal from employment or office; or (iv)for the awarding of contracts, awards, scholarships, honours, or other benefits; or (b)for the purpose of determining whether any contract, award, scholarship, honour, or benefit should be continued, modified, or cancelled; or (c)for the purpose of deciding whether to insure any individual or property or to continue or renew the insurance of any individual or property. (4)In subsection (1)(c), medical practitioner means a health practitioner who is, or is deemed to be, registered with the Medical Council of New Zealand continued by section 114(1)(a) of the Health Practitioners Competence Assurance Act 2003 as a practitioner of the profession of medicine. Section 39: Transfer of information to another agency. Transfer of requests Where— (a)an information privacy request is made to an agency or is transferred to an agency in accordance with this section; and (b)the information to which the request relates— (i)is not held by the agency but is believed by the person dealing with the request to be held by another agency; or (ii)is believed by the person dealing with the request to be more closely connected with the functions or activities of another agency,— the agency to which the request is made shall promptly, and in any case not later than 10 working days after the day on which the request is received, transfer the request to the other agency and inform the individual making the request accordingly. 20 September 2014 - A new lowThe government's the devil's hands, it's a lie and it's a scam They wind us up, put us down, and watch us go And if you close your eyes, there's a big surprise What the #*#* are we saying ?, do we feel what we dream about ? We've got to keep on praying , and one day we'll see the light Here's the thing - today I am embarrassed to be a New Zealander. Quite often actually I feel this way if I was being really honest. We have some of the highest statistics in the world for some of the ugliest things that we refuse to face - child deaths, suicide, domestic violence, the treatment of our animals and the weak and impaired. And our response is to back the big guys that are going to ensure that those at the bottom are punished for being stupid enough to have suffered tragedy in their lives. Under this government, we have seen the brutal and humiliating exit of thousands of brain injured clients from ACC with no regard to the law, human rights, government legislation - every document that states how to treat people with basic respects and dignities. We watched as the agencies that were supposedly 'independent' declined appeal after appeal because it's ACC, they can do what they like regardless of the law that says they can't. We watched that happen and then most forgot about it just as quickly. But for those thousands of people exited, most cannot afford lawyers, most cannot afford basic healthcare, let alone the costs of living, and most live with the daily terrors of instability and stress and a very uncertain and terrifying future. We watched that, and then in our droves voted National straight back in. This government, is the only political party in this country (including all the ones on the right) who said no to increasing the wage of carers in public and private settings, despite the enormous workload, appalling conditions and hard physical and emotional toll this group of people endure on a daily basis. And let's be honest - they are doing a job that most middle to upper income earners wouldn't do no matter what the pay rate - it is one of many viewed as "beneath a certain class". We watched that, and then in our droves voted National straight back in. Under this government, we have seen WINZ slash the numbers of beneficiaries without addressing the reasons why beneficiaries are there in the first place. We are talking about a group of people who statistically are the benefactors of abuse, crime, alcoholism, gang culture, teenage pregnancy, unemployment - you name it they have suffered it. And how do we respond? We tell them to stop being so useless and such a burden on the rest of us. We are in a sick culture if we cannot see what is so obvious and so documented and instead care only for the excitement and entertainment that we get out of minimising and humiliating those that we feel 'deserve' this abuse. Where was the public outcry about this kind of treatment? Where was the empathy and the desire to extend a hand and find ways that we could show understanding and support? We watched that, and then in our droves voted National straight back in. Under this government the child poverty rate has risen, as has the gap between rich and poor. Is this not embarrassing for New Zealanders? And what about those in Christchurch who have featured heavily in media footage bemoaning the government (as they well should) about the rotten state they have been left in, the lies from the Ministers, the promises all broken - well, Christchurch you just voted this government back in! What??!  But wait - there's more! You can forget about the Rights' of animals under this government. This supposed country of 'animal lovers' seems to have forgotten that National have done absolutely nothing about the pathetic prosecution systems currently in place that mean you can beat your dog to death and all you will be told is that you can't own a dog for 5 years, or you might have to pay $100 toward costs, and yes that is the full extent of it. This, despite years of campaigning from the SPCA and animal welfare groups around this country and beyond that have screamed "do something!". It seems that we are not above judging those who abuse animals, but yet we are loathe to abuse the government who is in charge of setting the laws that might end this abuse. Or we can think of the Hector's dolphin - and shortly that is all we will be able to do because there won't be any left. Last count there were only about ten being churned up in boat propellers in our Harbour. And who remembers New Zealanders passionate dedication to the Marine Mammal Act and our resolute dedication to ensuring that no animal was killed within both our country's boundaries and the international no-kill zone? Well, for the last 6 years we have done no more than mumble at the Japanese that we kind of don't like it and can they stop, pretty please. Last time they encroached on Australian and new Zealand waters, the Aussies went out guns blazing a la Braveheart; we wrote a polite letter and hoped they might have an opportunity in their busy schedule to one day read it. A far cry from the days when we would march as a nation, indignant that the governments in power were not doing enough. Today our response is to extend our business agreements and profit sharing with those countries we say are abusing our laws and our morals.  In voting for this government, we can kiss goodbye to all sorts of freedoms we smugly think we have any say over. I hope you don't like owning national assets because they will continue to be sold off, and only into the hands of those who already have money to spare. Roads will be created right through the centre of our treasured national parks to being in more money from tourism, despite the massive irreversible damage that will occur that we choose to overlook. More first home owners will apparently move into their new shiny abodes, but again only those who have money to spare. Every child will get a free carton of milk each day - but hilariously that is being rolled out into every school - including decile 10's that take home six figure + salaries who don't need the milk. Sadly however that only ensures one liquid meal a day for most kids on the poverty line; perhaps two if they are fortunate enough to get a free breakfast as well. But it's a long time between 9am on one day, until 8am the next - a period of famine we have proudly accepted is 'fine by us!' when we voted in a party who has committed to nothing more to help these children. And in a few months time Paula Bennett will force another 5% of beneficiaries off stating its for their own good. Is it? What do we know of these beneficiaries that we have fallen into this accepted wisdom trap? What if it turned out that the 5% were rape victims, or people with serious untreated mental health conditions, or perhaps it might be children who have been dragged backwards through foster care, or 'invalids' as they are known to WINZ, who are recovering from strokes, multiple sclerosis, or brain injuries. They are not exempt under this kick em off system we've got in place, and I can assure you that being in recovery is not a barrier to forcing them into work they are ill suited for and cannot cope with. What about our civil services? At every level, whether it be hospitals, DHBs, justice systems, corrections departments, the NZTA, the Commissioners offices, the Ombudsman, local MPS, schools, ACC - we have serious endemic problems. And those problems have been well publicised over the years, so we do all know about them. But we are fine with all that. What the hell is wrong with New Zealand, that they would support a party that overtly and arrogantly celebrates Profit before People? Have we really reached a point where as long as our pockets are lined with gold (or we are promised the utopia of $10 more per week) we don't care about anyone but ourselves and our own self-interests? Because that's what I see when I listen to people on the street, on political debates, campaigning - its all the same. Under this government you will get more, have more, be more!!! Never do I hear 'it's about time that the New Zealand people looked at themselves and asked who really needs our help, because you're not really struggling if you are crying poverty while your kids go to private school, or when you spend $500 a week on groceries, or when you can't afford another iPad or car immediately without first having to save up'. I am not interested in New Zealand's desire for constant self-gratification. I am interested in ensuring that the weak, the young, the old and the impaired - who are actually struggling in a very real way - can have a quality of life that the rest of New Zealand seem to not only take for granted, but believe that they are entitled to. Perhaps it's time for New Zealand to be grateful that they can walk, they can see, they can hear, they can think, they can dream, they can work and socialise, study and travel, to not be in constant pain or terrified every moment of every day - when you have lost those things, then you have a right to complain. But here we are, knowing all that and so much more - Minister after Minister being sacked for wrongdoing, NSA spying despite Key saying they weren't, charging the public for data about themselves, despite the public already having to pay for the privilege of that data being collected, lie after lie, manipulation after manipulation, greed, complicity, arrogance and no accountability whatsoever. And do you know what was worst about watching the results on TV tonight? In the areas where Labour won a clear majority on local candidate vote, the overwhelming majority of Party votes still went to National. Essentially, we want National to give us money (cause they've said they will apparently), but when it all goes to hell in a hand-basket, we want to go to our Labour MP and complain and ask him to fix it for us, because he's a nice guy and we can trust him. Really NZ? Here's some things I hope you can avoid by sheer luck under this beloved National government: I hope your child is never seriously bullied because if your child's school is anything like Glendowie Primary, then you will be told it is your child's fault for not having lower moral standards like the rest of the kids. Because bullying is fine there. What is resented and pointed out to the poor parent is the inconvenience to them of having to pretend to care about your child, who won't lower themselves to mockery, physical retaliation, and general nastiness. Which, after all, is the preferred style for a high decile school focussed on more important matters, like ensuring 5 years olds don't have to wait to receive an iPad when they walk through the school gates for the first time. And of course, taking it to the school board is pointless as they are too busy covering their ears and humming.You could go to the Children's Commission and they are fantastic but at a certain point, they will simply stop helping. Or maybe try to the Ombudsman - but then you have to accept that they will simply say Might is Right and disregard your actual physical proof in favour of the non-existent proof and assurances from the big business that is Glendowie Primary that they love kids, really they do. That is apparently enough - oh, and unofficial made up minutes submitted claiming they are official minutes. Fortunately an OI request will sort that out. Oh, no sorry , my mistake. The government only gives out information when Judith Collins has an interest in it. The Police might help, but then again, they might not. But luckily schools have a budget for psychological interventions, which is fortunate if your child has been terrorised and let down by every agency that has a duty of care to your child. National has removed all accountability for schools. They can no longer be reprimanded for anything they do, unless and until they are damaging students on such a scale as it makes the headlines.  I hope you don't have a child, spouse, parent or friend who has a brain injury. At 90 per day, that's 32, 850 per year. Over ten years, that's 328, 500 walking wounded. In the next ten years, that means you have a 1 in 12 chance of sustaining this injury. If you are lucky enough to be in this camp, you will be the proud benefactor of substandard, or no standard, treatment under ACC. You will however get unlimited ridicule, abuse, and soul destroying treatment which will label you - if you are not likely to recover within 2 years- as malingering, mentally impaired, degenerated, lazy, unmotivated, or deranged; as my case manager liked to say when I called, "it must be a full moon". You will be sent on assessment after assessment where every thing you do will be judged. If you have the good fortune of getting a report that confirm and diagnoses your condition accurately, ACC will make sure you are re-assessed until they can find an opinion that contradicts that. This will be the report they then use. Sorry. I hope you like getting dressed up and working yourself into anxiety producing states, because your future relies on a full commitment to being someone other than you are. Not wearing full make up and a business suit? You are slovenly and don't care about your appearance. Have toys out for your toddler to play with? Your house is a disgrace and you care nothing for tidiness. Not talking a mile a minute? Then you have flat effect and are clearly in the grips of clinical depression. Making an effort at small talk? Then you talk too much and are in the grips of mania. Guilty of calling ACC for information? Then you are after secondary gain and trying to rort the system. Given up and want to kill yourself? Then you have filled the heart of your case manager, who is getting bonuses for every claimant she exits. But you can always try and lodge a complaint with the independent complaints service at ACC. If you get 67 breaches of claimant rights, you will get a letter saying sorry. Then you will get a phone call from the Branch Manager saying that they aren't in fact sorry, but were told they needed to put it in writing before they resumed their abuse. Its just process, its not personal. Again, forget the Health And Disability Commissioner or the Privacy Commissioner as they are not in a position to properly investigate ACC in an independent manner. They can however sympathise with the breaches against you before telling you that because its ACC, it doesn't count. They are an island. They are untouchable. But there is hope in sight. If you can afford the $25,000 legal bill then you can join a waiting list of thousands and appeal these decisions against you in the District Court, where you will be up against at least two barristers from ACC with deep, deep pockets. That is, you could have, but latest news is that this government wants to abolish the District Court Appeals system for ACC claimants in favour of managing the whole process internally. Which leaves you with DRSL, the mediation service that is owned by ACC. Feeling lucky? I hope you don't know anyone over 70 because that's the point where your local District Health Board determine whether you are getting on their nerves. If you are deemed to be difficult, i.e. you are having issues with mobility, then a simple fall that brings you to hospital for stitches, can mean that you are assessed as needing to immediately proceed into residential care and cannot even go home to pack your bags. I'm not exaggerating here - my Mum was assessed by Marie Todd, Auckland Hospital, in exactly this way. Hours and hours of screaming and yelling followed, week after week after week, before they finally conceded that she didn't actually meet that criteria, but it was easier than investigating other options, such as doing their job and providing 'actual' care. Let's hope, if you are over 70, that you have a lot of people around you who can give up enormous amounts of time to fight for you. Because the pubic system certainly won't. And unless you have spent years researching and memorising what your rights are, then you are in a vulnerable position indeed.  I hope you don't have any sentimentality over our natural environment, the air we breathe, the flora and fauna we love, the parks we enjoy every summer - because they're not yours now. They are expendable commodities that will be viewed as measures of profit or loss. They are open to the highest bidder - I hope you've been saving. New Zealand - as a country we have traded an opportunity to protect the weak and the innocent, for a possible $10 pay rise. You might be okay with that, but I am certainly not. 15 August 2014 - Ambassadors of HopeToday I have started a new section on this site titled 'Ambassadors of Hope' (on the main menu at left) . Do let me know if you know someone who inspires you and makes your heart swell. They deserve to be applauded publicly :) 15 August 2014 - Oh the shame of it allWhen everyone else is more comfortable remaining voiceless Rather than fighting for humans that have had their rights stolen I might not be the same, but that's not important No freedom 'til we're equal, damn right I support it Recently we have been involved with a client who has experienced what is all too common and distressing for claimants of ACC. I tend to refer to it as the 'ritual humiliation process'. As an ACC claimant you are required to go to a lot of assessments, especially if you have multiple injuries. These are compulsory. ACC have a list of questions that they sent to the assessor for the purpose of either getting a diagnosis or getting an opinion on what rehabilitation you might need. This in itself is fair and understandable. What is not fair or understandable is the way that some assessors treat the patient. First off, they expect a claimant with brain injury to be able to spontaneously recall enormous amounts of information; full medical history, educational and vocational histories, pain patterns, symptom clusters, dates and times of symptom manifestations, the list goes on. They also expect a claimant to be comfortable with questions about your sex life, periods, relationships and other highly private and sensitive subjects. I could not begin to tell you how awful it is to be asked these questions, especially knowing that if you confront them on this, they have the right to say that you are being uncooperative. I know of some claimants who have been booted off ACC's books for non-compliance on these types of questions. Now - why on earth would any assessor need to know this information during assessments on cognitive, psychological or other testing? There seems to be absolutely no basis for this other than to unsettle a claimant and potentially humiliate them.  Going back to the list of things a claimant is to remember. As anyone with a brain injury, or who works with the brain injured, will know memory is one of a set of problems that causes difficulty in this group. Whether it is short term, long term, working memory or memory recall, there is likely to be an issue with this function in the brain. Yet (!!) never has an assessor asked me whether this is a problem I experience. To the contrary, even when I have offered this piece of information into the problems with memory I experience, this has later been used against me (and others I know) in assessments whereby they can criticise the claimant for not being forthcoming with information, or in having conflicting or confused timelines when answering questions. How does this make sense?? One of the things I learnt over the course of my time as a claimant was that I was going to be heavily judged on my ability to accurately present a picture of my health over a period of 17 years (or however many years it was at the time of each assessment). Now, there was no way on God's green earth that I was going to be able to do this unaided. I have many problems with memory in all areas. I couldn't give you dates if you paid me. In any event, I would think that this would something the assessor could find out, given they have access to the full medical files - that are dated! So I began to build bundles. I requested all my files from ACC and my doctors, scanned them all into my computer, arranged them chronologically and then made a PDF that detailed my long and complicated history. I knew that ACC, by this time, took a very liberal stance on what they chose to send through to assessors, and in most cases this excluded all the reports that were (in my view) the most important. I though that in doing this I would be in control of what information an assessor had access to, and could ensure that this information would get to the assessor some weeks before my assessments so that they could read over my file and have a more complete picture of my timeline and diagnoses to date. This would ultimately mean that during my assessment we could focus on what was important and the questions ACC were asking, rather than spending precious time on some kind of memory exercise. What I didn't take into account was that the assessor's would then condemn me for this approach to efficiency. I began getting back reports that variously alluded to me being some kind of control freak, over achiever with a distrust of assessors and ACC. I was being seen as someone who was resistant to the process. Pardon??!!! I was undeterred. The second thing I would come to learn was that the file I would send through, or bring with me, would be deemed excluded from the assessment process. The reason? Apparently, if it was not sent by ACC themselves - despite my copies clearly being reports requested by ACC - then they not going to be looked at. Anything that I may have provided, for example additional or more recent diagnoses, were conditions that I would later be told were "not known" to assessors so they could not be considered as part of my health picture. Huh??!! So, in a nutshell, if ACC chose not to send through important and relevant documents, then no matter what I said or brought, those conditions simply did not exist in the eyes of the assessor. The result? Oftentimes I "didn't have" a brain injury, and consequently should be immediately returned to work as the only documents that they had received from ACC were for abrasions and broken bones from my accident 17 years previous. The further 20+ diagnoses on file were apparently irrelevant in the eyes of ACC. How mad is that!!?? The only remedy, as all parties would know, was a lengthy trip to mediation which could take upwards of 6 months to get to, and then a further few months could pass while waiting for a decision to be issued. I kid you not when I say that I have been to some mediations and had the mediator ask me, quite combatively, whether or not it was "really that much of a problem" that an assessor had not been advised that I had a brain injury, and had consequently stated in their report that there were no reports to indicate that I had one!! (This assessor had my whole file and we had spent the full hour discussing my brain injury. When I asked him what reports he had referenced for his assessment, he advised he wouldn't tell me, and anyway, he had shredded my documents after he got them!) You couldn't make this stuff up!! It's a complete farce!! Home-based assessments were often just as bad, if not more insulting. When my daughter was just a toddler, I was assessed multiple times by physiotherapists or occupational therapists. They would come to my house and do the standard interview and submit these to ACC. Some weeks later I should get copies of these reports which harshly judged my home and me. At that point I was a very sick, very exhausted single mother of a young child in a small rental home, where I still live. Despite having a happy child who was well fed, watered, dressed, educated, played with, and generally adored - this success was never mentioned. What was reported was that my home was "cluttered", "untidy", "dishes not washed", "lawns not recently mown" and the like. My house was not unclean, it was not bedlam or chaos, it was not anything more than a typical house where kids toys might be out (not shocking given that she was in the room playing with them at the time of the assessment), or where at 10am the breakfast plates hadn't been washed yet. At one point I was told that my indoor clothes drying rack took up too much room and I may want to consider that. "Consider what?" I thought - not drying clothes? This further lapsed into personal criticisms. Wearing what I consider to be 'normal' clothes - a t-shirt and jeans perhaps - was labelled as 'not trying hard with her appearance'. Not wearing make-up was seen as 'being indifferent to how she looks', or 'not putting in much effort'. If you spoke animatedly, it was queried whether this was inappropriate. If you spoke softly, it was queried whether you had issues with self-esteem. If you tried to be moderate (given the last round of criticisms), you were labelled as 'lacking effect' or of having 'flat effect'. If you answered questions about your job with sufficient detail (as in you answered the question you were asked), you were told that this was potentially a little over the top. If you gave a short answer, you were told that you were 'withholding'. It felt like no matter what you said or did, an assessor would form an opinion on it. The worst I have ever heard was of a rape victim who had been sent on an assessment for some type of neurology based appointment (in other words an appointment that was for something other than that traumatic experience). She was asked multiple questions about her sex life - what I would deem to be highly inappropriate and appallingly insensitive given its non-relevancy to this particular assessment. When she received her report, the assessor had written she had come across as evasive and prickly and that it was his opinion that she 'just didn't like sex'. Can you imagine a more horrific scenario than that? And where is the oversight for these people? Where is the body that ensures quality control and appropriate standards of medical care? I have sent letters to the Medical Council, the H&D Commission, ACC's Complaints service, the CEO of ACC, The (Dis)Honourable John Key, the ministers for Health and Disability - and you know what response I got for this appalling balls up of a health system? None. The only reply was from the H&D commission who gave me a response that made me seriously question whether they had even read my application, let alone weighed up the morality, legislation or ethical conduct of assessors. In the battle to be treated with any dignity at all, sadly "Might is right" as they say. If you are 'only' a patient, then you can forget about natural justice or fair trials. The mediators were until recently owned by ACC! How do we fix this? How do we ensure that when a patient enters an examiners office, they are given the rights that the Government say they have? How can we resolve the issue of accountability from those at the top of the chain? Will we ever reach a place where this kind of treatment is condemned as archaic, unethical, immoral and outright cruel? "It has always been a mystery to me how men can feel themselves honoured by the humiliation of their fellow beings." Mahatma Gandhi 6 August 2014 - We're all in this togetherRecent discussions with businesses and charities have confirmed what I have always believed. In order for anything to really change in NZ, support needs to start at the bottom and work its way up. All throughout this country there are incredible community groups, individuals and charities who are determined to make people's lives better - and god bless them for that. The problem however is that a lot of these people are hampered by lack of funding, lack of personnel and lack of interest by the wider community who are focussed on improving their lot first, before they think of expanding to others. I appreciate this is perhaps a controversial view that others do not like hearing but here are a few facts that I have picked up along the way.  Did you know that the vast majority of NFPs are run by people suffering from the very disease they are set up to for? Within the larger NFPs, where the budgets run high and salaries are attractive, you don't see this problem. Yet at the other end, where volunteering is the only option, there are very few, if any, persons picking up the slack who are not directly affected - spouse, carer, child, etc. What does this say about our community spirit, and our community-mindedness I often wonder? We believe that making a $3 text donation when the telly asks us to gives us good karma points and means we are making a difference. In some ways this is definitely true - usually we are helping overseas organisations during times of crisis and this is a noble deed, I agree. But on home soil - who are we helping? The charities that can afford billboards and commercials are not the ones who are struggling - after all, if they were, they wouldn't be spending precious donated dollars on advertising that runs upward of a million dollars per year; they wouldn't be hiring CEOs on six figure sums. But that is who we donate to, on the whole, because they are the ones we see. All over this country NFPs are folding. Where they have survived they are on skeleton staff or volunteers only. This is devastating for NZ and those reliant on these services. In recent discussions with medical personnel we learnt that once a patient is out the door, there is no time to follow up on them and see whether they are coping or supported. It is unfortunately an out of sight, out of mind, onto the next patient process. So what happens when these people walk out the door with a devastating diagnosis - potentially one that has included the words "terminal"? Where do they go when the NFPs cannot afford case workers to do home visits? When they cannot afford to print out information that would be invaluable? When they cannot offer referrals to other agencies because those other agencies cannot afford you either? I have always had the firm belief that all charities that help those with medical conditions should be at the same start line. The government should contribute a small sum - lets say $10,000 - to each of these groups at the start of each year. For the bigger groups, perhaps it would seem paltry but for the smaller groups that money would go a long, long, long, long way. That kickstart would pay for an employee, printing runs, volunteer costs, travel to clients, local advertising. That kickstart would feed straight into the local community bringing income to local businesses in turn. That kickstart means that at the very least each person suffering these conditions would have a chance at being supported, not being isolated, having someone fight for them, advocate for them, hear them! What a difference that small chunk of change would make to so many in this country. We hear endlessly the gripes of those wanting more money to go back in their pockets in tax breaks, loopholes to rental income, depreciation on cars put into "companies" or trusts they have set up. Big business don't want to pay big money when there are so many shareholders waiting for their next pay out. I'm tired of listening to John Key campaigning to those that can afford their bread and butter, because god forbid he would insult them by pandering to those lower down the socio-economic ladder. I recently had a conversation with a National voter where I was told not everyone is "lucky enough" to have time to commit to charity the way I do, that the rest of NZ was busy ensuring their own families could reap the benefits. Really!???? Like so so many others out there in the community, I am on the breadline, and have been for a long time. I work seven days a week to get by, long ago accepting that I will never own my own house, get a new car (unless my 19 year old one dies), have the luxury of owning shares, or not noticing the tax dollars and kiwisaver payment coming out of my bank each month. I am a Mum, as well as having multiple family members to support. And I suppose it is worth pointing out that I am also very sick. I have four major conditions, as well as over 20 diagnosed dysfunctions. It may just be me, but I don't think that it is reasonable to be told that I am "lucky enough" to have the time to commit to charity, unlike everyone else. I have many perfectly acceptable and justifiable reasons why I could say "I need to put myself, and my family, first", "Working is pushing me into relapse", "Every dollar I earn is needed to survive". But I know that there are so many people in the community with family responsibilities, long work hours, their own illnesses to manage who have found the time and the want to improve the lives of others - and they are the people I admire the most; the people who I respect and wish to be like. There are churches, and iwi, and plunket groups and campaigners nationwide who are mucking in and gaining enormous satisfaction from the work they do. They are challenging view points and changing cultures. Without them bullying would be a silent epidemic, gay marriage would still be taboo, elder abuse would remain in the shadows, and the hundreds of thousands of sick individuals would continue calling into the darkness for help with no reply. I don't want to be a part of the group that says "me first". I don't believe there are many who cannot be doing something more for their communities, even if it is just standing up for the rights of others, writing a letter to their local paper, volunteering at a local food bank at Christmas. The problem isn't lack of time, it is how we choose to spend out time. It is how we choose to spend our money. I would love to see altruism studied at schools. I would love to see all high school students doing mandatory community work as part of their NCEA credits. I would love to see more businesses getting their employees to give back to their communities as part of their paid time. I would love to see a world where giving is more valued than getting. Where being community minded is valued. Where everyone does their share. Because at the end of the say, no matter who you are, you are only one diagnosis away from being here at the bottom. And when it is you being told "we can't afford to help you", then perhaps you might see the world in a different way. Food for thought. 21 July 2014 - Hidden fracturesI thought I'd tell you a bit of a story about a guy I know. He was unlucky enough to be in an accident some years ago where he came off worse than the concrete he impacted. Ended up with a bunch of abrasions, a broken ankle and multiple hairline fractures of his tibia on his right side. Unfortunately the fractures were not picked up on in the busy accident and emergency clinic despite the extensive bruising and broken bones nearby. While he suspected that there may be more breaks, he was assured during follow up assessments that there was no need for further x-rays, no further damage likely and his recovery would be "clinically unremarkable". Their professional opinion was that he was unlikely to have any further problems, and anything minor (such as inflammation) would run its course and resolve spontaneously. In the immediate months that followed the accident, he told his GP that the pain was still there and every few days it would get so bad that he would be left unable to stand; it scared him a bit. The GP said that he felt this might be a slightly hysterical reaction - he was a young guy, had had a bit of a shock; sure there was still some tenderness at the site, but it wasn't major. It was possible that he might actually be bringing this about (psychologically speaking) by his constant focus on it, rather than it being actual damage that was measurable. The best thing he could do was get on with life and try and forget about it. So life trucked on for this guy. He decided to take the advice given and put the accident behind him. For a while this worked pretty well. He studied, he worked, he went out with mates, but all the time he didn't feel quite right. He decided he would get a second opinion, try and get an investigation going into why he was still in pain and felt like he wasn't standing straight. He saw half a dozen different doctors who had him walk around their office, agreed that it seemed as if he was weight bearing slightly to one side but no one could give him answers. They took his history, sympathised with his predicament then sent him on his way no wiser than when he had arrived. Meanwhile, back at work he was starting to notice some problems. Being on his feet for long periods of time was sending pain up into his knee, and then later his hip. He started favouring his left leg, compensating for the problems in the right. It mostly worked and got him through the days without anyone noticing the impact on his work. When he got home, he would put his leg up on a cushion to ease the aches the day had brought up. This typically did the trick and let him forget about the discomfort momentarily. Slowly, he became aware that the scar at the impact site led to strangers inevitably asking questions about its cause. Not being comfortable with the attention, and with the excuse of being outdoors most of the time, he started covering up his leg with a daily uniform of jeans and boots which covered the scar and stopped his self-consciousness. While that was an easy problem to solve, it was harder to cover up his discomfort when out with his friends. With the onset of winter, he had begun feeling the cold in his bones; or more specifically in the bone that was meant to undamaged. Weight bearing to his left didn't achieve anything and he was left to deal with a jarring pain that made him feel as if he was going to wretch. He started backing off his social engagements, limiting outings to those that were just with close friends - and preferably indoors. While his friends were initially supportive, a year later and without the crutches and cast on display, their sympathy began to wane. He himself had been the one to tell them that his GP had said there was nothing wrong with this leg, his ankle had healed perfectly, so why was he skipping time with them and harping on about his leg do much? He told them his leg was still troubling him, but he wasn't sure why - all the tests on his ankle kept coming back negative, and the doctors were adamant that he should have recovered completely by that time. The manual tests were showing nothing remarkable and there was nothing obvious to suggest that he should be experiencing any pain. Back he went to his GP who listened to these recent developments and referred him to a Specialist. He asked if he could have an x-ray on his leg. The Specialist said that the pain, at the frequency he was getting it, was unlikely to be causing too much of an impact upon his life - as opposed to someone who had more serious problems - and as such just needed to be managed better, no x-ray needed. No strategies were offered and again he left none the wiser and no better off. In response to his growing isolation and the want to still be accepted, he upped his social engagements to show them he was still in with the group but the increase in time spent on his leg simply increased the pain, and slowly but surely the smiling and small talk gave way to irritability and defensiveness. His friends stopped inviting him out and he became too tired to fight for his place in their sympathies. Those friends were lost to the past, and new friends were seldom made - owing to the fact he couldn't do all the things that other people wanted from friends. His own company was often his only company. On the work front, it was all falling to pieces as well. On his first job he had been "caught" sitting around - as his boss described it - when he should have been working. He told his boss that his leg had been causing him so much pain that he had to sit down for fear he was going to pass out and he had found himself unable to get up again; he explained that this had been happening on and off for several years and he couldn't predict it. His boss thought his story was more likely a cover up for a late night drinking session - if only he knew how unlikely that was! - and dismissed him. Job two didn't make it past three months before he was again labelled an ex-employee for the same reason. Without a medical note, he was not likely to find any sympathy. In time, the pain became so bad that he couldn't hold down any job and the offers dried up. Temporary help from WINZ soon became permanent help as his symptoms worsened and he found himself unable to manage even the most basic tasks of housekeeping and activity. The piteous comments from others who heard he was a beneficiary left him feeling as if he was meant to be ashamed; a situation he knew wasn't his "fault" but found himself needing to hide nonetheless. On the years dragged and over time the pain spread throughout his leg and hip before radiating into his lower back. His compensation strategies ceased to have any benefit, and in fact to the contrary started causing him niggles in his left leg from the extra load they had been carrying for so long. He sunk into a depression that seemed to drag him to the darkest, lowest depths of the ocean from which he felt he would never return. All he had ever wanted, or needed, was someone to hear him and help him find the cause. The constant minimising and refusals to do more than symptom management left him frustrated, disappointed and more than a little bit angry. By chance, when undergoing an assessment from his GP for a different problem, his doctor noticed a slight deviation in the way he was standing and told him, in his opinion, his leg was not entirely straight. Further testing confirmed that there had likely been several fractures that had gone undetected which had not set perfectly, which was why he had experienced the ongoing pain and the shift in weight bearing. It is likely that the leg had been overlooked when compared to the more obvious ankle break and abrasions, and that even though the swelling had eventually subsided, the breaks had been of sufficient size to have caused exactly his set of problems. It was also likely that an x-ray, so long after the accident, would be unlikely to show anything so late in the piece. His GP gave him the answer he had so desperately needed and better still, acknowledged that his injury was serious enough to have had a major impact on his life. He felt that this guy had fallen through the cracks and had been dealt a major disservice by those who had earlier assessed him. His ongoing pain was now likely caused by a chronic pain syndrome, triggered by the initial lack of treatment. Feeling finally validated, he told his friends and family and lodged a claim with ACC with the hopes of getting treatment for the ongoing pain. Their response was to order an x-ray, produce the negative results and let him know that the injury had run its course and should be causing him no further problems. Insinuations were made about his mental state and possible get-out-of-work intentions. In the decade since, nothing much has changed. He has had the fractures diagnosed by several different specialists now, and additional chronic pain conditions confirmed. He will never be able to definitively prove on radiological tests the significance of those fractures, nor can he show them the impact that the pain is causing him. His concurrent depression will always be referenced as a probable reason for his ongoing problems, and his pain condition labelled "controversial" due to the medical community's uncertainty about known causes and cures for this diagnosis (despite decades of confirmation by a multitude of very intelligent medical professionals throughout the world). His inability to work will remain reduced until such time as ACC or other medical persons provide meaningful periods of treatment - which for some reason seems to keep getting stopped as soon as progress starts being made. Attempts to get alternate treatment options will be flatly rejected as outside traditional care. Meanwhile he will be subject to claims of being a malingerer, he will hear the cries of those unaffected by such things label him "another useless beneficiary" and he will remain unable to afford the expensive treatments that those who can work can afford, but those hit by misfortune cannot. This will all happen despite the fact that he has finally got the validation that what he is experiencing does actually exist and does actually cause all the problems and pain he has reported. Of course, somewhat ironically, despite the evidence on file that he finally has, he will also keep hearing that "the effects of his injury should now be spent". "Should" being the operative word... ...but what would his life have been like had the fractures been diagnosed at the outset, had he been believed and listened to, had he got the treatment at a time when it could have made a difference? Its possible that the effects of his injury "would" be spent. He might still have those same friends; he might still be working and be high up that occupational ladder; he might have been able to buy a house with those earnings rather than rent; he might have enjoyed a pain free life; he might not have had to endure the dark depths of depression; he might not have had to spend every last dollar he had saved on fruitless medical appointments where the objective seemed to be just collecting his money. He might not have lost all those years to a system that didn't want to take the time to truly listen. The difference is too big to ignore. Why didn't anyone step in for him and assume he was telling the truth? Is our system really one in which you're assumed to be lying unless you prove otherwise? Would it have made a difference if he had been older or younger? If he had been on private health insurance? When you look at his journey, how many critical points were there when an intervention could have turned events around? The support of just one family member, or one friend, or one sympathetic doctor? What would you have done differently if this was your journey? Now, what if I told you that this guy hadn't broken his tibia, but instead it was a concussion to his brain? What if I told you that the damage that they couldn't find on the x-ray was actually in an MRI? What if for all those years it was the effects of a brain injury he was struggling with - the isolation, the pain, the depression, the lack of diagnosis from doctors, the refusal of cover by ACC, the loss of jobs, the loss of income and friends, the resulting "controversial" secondary pain condition? Sound familiar? 24 June 2014 - Institutional bullying - can't we just talk about it?Recently we have been engaged with various institutions both public and private. We have repeatedly come up against entrenched behaviour that appears to be an accepted part of the culture of these organisations, despite the obvious negative benefit to patients. This has raised the issues, again, of accepted wisdoms, institutional bullying and the gap that exists within the healthcare systems that prevents effective communication and the upholding of patient rights. I have to ask, why is it so important to the medical community to win at all costs? There seems to be an attitude that the patient cannot be right if the doctor has not thought of it first, or that an apology will never be given where a breach of rights has happened that could have been prevented. Far from it, it appears that the current model has been shaped with the idea that a hospital or healthcare system can never be wrong, and if questioned, will beat you down until you quietly beg forgiveness for being so brash as to speak up. It appals me. We recently had to fight (and fight and fight) for a meeting to take place that had been agreed on many weeks previously. It was essentially at the point of a stalemate when suddenly a woman who had only been in her job a few hours (literally) saw our emails, arranged the meeting with no fuss and no delay, and delivered what we had asked for. Just like that. She is what the healthcare system is lacking. She understood immediately the benefit of the meeting and the effect this would have on the patient, she communicated effectively and efficiently everything we needed to know, and as a result everybody won - patients, advocates and the hospital. Why is this so rare and so hard to find? I have come to believe that there has been a fundamental flaw in the mindsets of hospitals and what their staff have been told to believe. It used to be that you would go to a hospital and your needs would be met, your concerns would be heard and your treatment would be delivered to a high consumer standard. Now, I strongly believe that the mentality is one of private business. No longer do heads of department remember that a public hospital is funded by the public; no longer do they remember that their job security and unbelievable salaries are provided to them by the public; no longer do they remember that they are legislatively and morally accountable to the public and not just shareholders; and no longer do they remember that basic respect, dignity and kindness are mandatory and not optional. It would be lovely if these people could take some time to be grateful and humble about where they have ended up in life - a position of trust not afforded to many, but an enormous gift to those few. And in the end, it would be really nice indeed if they could remember that they have taken an oath to harm none. This is not limited to equipment use or skill with a knife - but extends to the spiritual, emotional, psychological and physical needs of the patient. We are all busy in this life, but we are never too busy to practise kindness and responsibility. Those choices are ours every minute of every day, and there is simply no excuse for an attitude that puts patients second. 04 June 2014 - The true impact of concussionLike Shontayne, I am light and noise sensitive, have troubles with memory recollection and struggle to accept the damage that concussion has left for me. Following my car accident, I had a number of black outs (known variously as vaso-vagal syncope, drop attacks, orthostatic hypertension), each time striking my head against the floor until I learnt the warning signals and could avoid those extra knocks. The result was a slow deterioration, not diagnosed, that made my initial prognosis very different than it should have been. Over the past 17 years, my symptom index has been contrary to perceived wisdom in that it has increased rather than decreased. I now have about 25 different diagnoses affecting many different aspects of my body, and life. It is because of this supposed anomaly that is my journey, that I have recently begun conversations about why it is that the medical profession is so dedicated to its conclusion that concussions resolve within two years. If you go beyond that time frame, it is said that it must be something else that is causing these symptoms, such as mental health issues, environmental issues, stress or relationship problems, the list goes on. But here is the thing - if the symptoms I am experiencing on day 729 (a day short of two years) are exactly the same as the symptoms I am experiencing on day 731 (a day over two years) how can it possibly be that suddenly these symptoms are of a different cause? I'm sorry but I just don't buy it. I have often had this conversation with the various neurologists and specialists I have been sent to see, and as yet not one has an answer for me other than 'because they say so'. There is no scientific evidence that supports the idea of a miraculous healing within two years. In fact, the science says that each concussion - in much the same way as fingerprints - is necessarily going to be different from the next due to many factors such as where you are hit, how hard you are hit, any vulnerabilities that you may have to begin with, whether you receive timely medical assistance, whether that medical assistance is of the type you need, whether you receive appropriate rehabilitation, whether the specialist is suitably qualified or experienced, whether you are able to rest, whether you are have co-existing conditions that impact upon the concussion, whether you develop post traumatic conditions, whether you return to work or sport too soon, whether you recognise any ongoing symptoms and know what to do - the list goes on forever. So how can anyone say with certainty that a concussion will last a certain period of time and no more? About 5 years after my accident, I went for a neuropsychological assessment - similar to an IQ test with all sorts of tests that measure the abilities of different areas of your brain and how they are working together. My results were fairly unextraordinary in that the majority of my cognitive abilities seemed reasonably intact with only a few specific functions falling well short of where they should be. In the grand scheme of brain injury, I had had a fairly lucky escape and as such deemed highly likely to have a short and complete recovery. But hold on - it was five years post injury. Surely if I fit within the accepted wisdom, then those symptoms would no longer be there? The familiar line from Specialists to me in those years that followed, when they were told of my ongoing symptoms, was that the "effects of my injury [were] now spent" - any symptoms continuing thereafter were due to other causes such as psychological factors or life stressors unrelated to the injury. Same said about Post Concussion Syndrome. I discovered that the above accepted wisdom originally came from a statement that was made stating that it is within the first two years post accident that rehabilitation is vital as during this period the brain is undergoing enormous changes, and as such the theory was that plasticity/recovery was at its highest. That seems to have evolved chinese-whispers style into this latest incarnation that two years is when a concussion resolves. Quite different from the original premise. At the time of my neuro psych assessment I had a 'typical' range of symptoms - headaches, fatigue, memory difficulties, light sensitivity etc. It was, as I noted, probably most unextraordinary. However, rather than the symptom index reducing over time, my index began to increase with every new diagnosis being proven attributable to the index injury. No one seems to know why this has happened, and to the contrary keep telling me that the 'concussion' should have resolved 15 years ago. What I keep saying in return is "but it hasn't so how can you say it is not there, and what are you going to do about it?" Only one specialist out of around 15 that I had to see made any attempt whatsoever to get to the root of what was happening, and provide treatment. The others just quoted the company line and sent my on my way. As I am sure you can appreciate, this has made me question why there is such a strong stance for this accepted wisdom - when in reality a knock to the head by any measure of probability is going to be different for each person who experiences it. My work with Hopeworks, and the clients I speak with, has only extended that view and has solidified in me a want to have others consider and hopefully question this wisdom also. That perhaps it is not as black and white as it has been made to appear. It took me 15 years to disprove the initial report that stated that my concussion symptoms could not be ongoing or expected to be causing me any problems. Unfortunately, a lot of doctors that I saw simply read these comments and accepted them as fact - regardless of my presenting symptoms that should have made them want to look deeper. I have to question how many people like me are living without help due to this 'rejection' by the medical community - and how many may have been on a different road had they not had the finality of that statement given. For those of you suffering from concussion/traumatic brain injury or post concussion syndrome - I hope that I can start a conversation with the medical profession and find out exactly why this line is so overused when the evidence suggesting that it is flawed science is so strong. Hopefully, in time, we can have this accepted wisdom replaced by a new wisdom - that as long as a symptom is there, it is not resolved and until such time as it is, then no doctor should ever tell their patient that it isn't. So much more work needs to be done. 1 June 2014 - It's all in the phrasingIt won't come as a shock to most that New Zealand healthcare has had its fair share of public humiliations recently - most memorably the scandalous, completely lackadaisical and repeated release of private information by ACC to the public.Could the public be partially to blame for this in some way? My honest answer is yes. Starting with the generations above us, and passed down to us as gospel, we have been taught that we should put absolute faith and unwavering trust in anyone who has letters after their name. They are above the law we are taught and should never be questioned. They are up there with God and the Queen, and any indiscretions must be immediately forgotten lest it lead us to question the blind faith we have invested so heavily in. It turns out that some of the agencies we so earnestly trust rely on this backward thinking, and in the case of some, milk it heavily.  My Mum, Dad and I all had the misfortune of one particular General Practitioner. Following my car accident, after which I began losing consciousness almost daily and was greatly depressed, this GP told my Dad I was 'doing it for attention' - I was after all a teenager and that is apparently what teenagers do, according to him. I left his care and found someone else. Unfortunately for both my parents they decided to continue to stick with him as he had been the family doctor for so long. I had to see him at one stage regarding my Mum's care, and we were discussing her recent diagnosis of dementia. Said doctor informed me that there was, in his mind, no such thing as dementia (the symptoms I guess he meant) and it was just a weakness of character. My Mum stayed. My Dad meanwhile experienced this doctor's incompetence in the last days of his battle with Motor Neurone Disease. He had begun the horrible decline into carbon dioxide poisoning whereby he was not able to expel enough from his lungs so it was slowly killing him, and leading him to hallucinate and experience great distress. We called said GP and asked for oxygen to be brought to the house, hoping this would enable my Dad to pass away without this distress and discomfort. We were told that the hospital did not have any currently available but he would call them again at a later date. My Dad passed away days later, in hospital. I was tearfully speaking with a member of the hospital staff and said I was saddened that there was not any oxygen available for my Dad in those last days as it could have made it more tolerable for him. The lady replied, quite startled, that there was always oxygen available and where on earth had I heard that. I told her and she said that any request would have been filled immediately - no request had obviously been made. It turned out we had called the GP as he was heading out for a week long holiday in the tropical Islands and obviously placing that one simple phone call - 5 minutes at best - was deemed to be not worth cutting into his holiday time. I have experienced this superiority/God complex many times over the last seventeen years, and it never fails to knock the wind out of me. This idea that a qualification means that they are above the laws that govern them and that their opinion is unquestionable. I find that premise laughable. The best doctors I have ever had, who stand more than head and shoulders above the rest, are the ones who listen more and talk less. They are the ones who believe that we (humans as a whole) know far less than we think about the brain and body. Who believe that a patient's symptom index is the thing that matters the most and carries the most important information they will need. These doctors, far from believing they have learnt everything they will ever need to know, are constantly upskilling, learning, listening and attending. They understand that they are here to serve the patient, and get to the root of the problems, not to stick a giant arrogant plaster on the symptoms and hope it goes away. 14 May 2014 - Where's the map?only 'good fortune' got put through to a deeply sympathetic nurse who immediately put me at ease and gave me the information I needed. No fuss, no fights - it just happened. Later this morning, we attended a meeting we had arranged which had sadly come about as a direct result of a very anxiety producing patient experience. A number of questions have since been floating around my head as a result of this contrast. Primarily, is it still reasonable to expect high quality compassionate care as a basic right? And what does care mean in an environment which, behind closed doors, is still fundamentally a 'for profit' business? Ultimately all District Health Boards, Accident & Emergency clinics and medical services - whether public or private - need to be 'for profit'. But unlike the private sector, the reason for this should be less about shareholders, and more about making sure they can fulfil the responsibility placed on them by the government to be open and available to the public when they are needed. No money = no service. So, compromises must be made, both by the service provider and by the public. We, the public, have to expect slightly longer waiting times for things that are not acute; we need to be prepared to be pushed out to community based services or alternate medical facilities to ease the load on emergency services sometimes; and we are asked to subsidise the ambulance services. (Don't get me started on this one! St John are incredible. It makes my blood run cold that our emergency helicopters and ambulances are not fully paid by the government. While in an ideal world every person could afford the $80 fee, most can't and this is a tragedy for the viability of the St John service. Yet, we accept our tax dollars going into paying the mortgages on MPs second homes. Good grief!) At their end, DHBs and the like need to run departments on smaller budgets, smaller staff numbers and be continually subjected to scrutiny over their choices of where that money is applied. And I'm fairly confident that most departments are far from the position where they can, or would, consider luxuries. But is patient care really a luxury item? The Health & Disability Act states that consumers of a health service can expect the following:
On top of this, the New Zealand Medical Council has a list of Principles of Ethical Behaviour applicable to all physicians including those who may not be engaged directly in clinical practice:
They further explain the responsibilities to Patient's as here: Standard of Care
Respect for Patient
Patients’ Rights
So why is it that when a patient complains about poor service and care, that the medical profession become up in arms? I recall a hospital stay my mother had in the Rangitoto Ward (Older Person's Health) at Auckland City Hospital. She was completely left out of all major decisions, was not consulted on anything, and many of her basic care requirements were woefully lacking or absent entirely. She stayed in this ward for over a month. The ward decided she was unfit to go home and that she would only be discharged into a rest home environment. They would not budge or offer any explanation to us. My repeated requests to view the assessment were flatly rejected. What followed was a hostile environment where the house doctor refused to discuss the extremely flawed assessment process that had taken place, the many breaches of my mother's rights as a patient, and the decision which was based on what was easiest for the hospital, rather than what was best for my Mum. We then had to demand several meetings with the multi disciplinary team where they steadfastly refused to consider anyone's opinion other than their own. I ended up posting a comment on the ADHB Facebook page as I was not being listened to, which resulted in the Director, Barry Snow, stating that the hospital were right - a decision and statement of fact made without a single moment of consultation having been made with us on what was happening. It took a further two weeks of daily visits and shouting matches with the hospital before the ward finally conceded that my Mum could actually go home, that their assessment had not been done properly (if at all), that many of my Mum's rights had been breached and that their entire process had been flawed from start to finish. Did we ever get a single apology from House Doctor Marie Todd or Director Barry Snow? No we didn't. We got a hostile, and completely cold parting of ways. It was without a doubt, one of the most abusive medical situations I have ever experienced. The worst part? This was an Older Person's Health ward. How many of these older persons have potentially been booted out of their own homes and into aged care unnecessarily over the years? Certainly had I not been angry and available, my Mum would have been yet another victim of this system. As it was, it took me a month of daily fighting - something most families would not have the luxury to do within their committed lives. I also had a decade of knowledge on the healthcare system and legal rights under my belt. Had I been unaware of either the responsibilities that are placed on doctors, or the rights on patients - it would have ended much differently. Which brings me full circle again to the question "is it still reasonable to expect high quality compassionate care as a basic right?" This situation would never have happened had the standard of care required of this Ward been adhered to, respected, monitored and upheld. Were my expectations too high? No - I think my expectations are in line with what any New Zealander would expect from a public health system. 08 May 2014 - When your words mean nothing I go la la la...Today marks the beginning of my month of open letters to publicly funded persons and organisations who believe that bullying others is their right and a sign of their absolute power and control. I represent a lot of people who have encountered abuse in many forms from systems that are supposed to be there for our protection and who are appointed to help us. I am not afraid to speak out against abuse; in fact I get great satisfaction from knowing that I am unafraid of the "big kids" now. I will speak up for me, mine and anyone who feels helpless, hopeless or oppressed. So, to those who believed that pushing me, and mine, down meant that you had won, let me assure you that you were very, very wrong. I believe that the truth is the only winner - and that those who speak the truth will ultimately prevail.Hopeworks is now averaging almost 300 new Users each week, with around 2,500 page views a month and building. As I have said to others, there is always a tipping point when things can start to change. I believe that we are fast accelerating toward that now. Hopeworks has a built in audience of just over 3 million people, a large proportion of whom will have experienced some form of neglect, incompetence, abuse or breaches in privacy, trust and information. This is simply not acceptable when those services are funded almost exclusively by the public through their hard-earned tax dollars. On behalf of the three million New Zealanders who suffer brain injuries and neurological conditions, and the many more who have been bullied and belittled - I will be your voice and I will speak loudly so that we can all be heard. It's time something changed in this country and the power was returned to the people. It is not hard to listen; it is not hard to care; it is not hard to put your ego second to the needs of those you have sworn an oath to protect or serve. For the medical profession that means "above all harm none". For others it is "provide a safe physical and emotional environment for students". For others still it is to "ensure people are treated fairly in New Zealand". I'm not sure about the rest of you, but even without a PhD in my pocket, I find those statements fairly easy to understand. If I'm being really honest, I understood those things in kindergarten. Is there then any excuse that validates abuse of position? Abuse of those under your care? Of lies or manipulation? Of diminishing or demeaning others just because you are in an elevated position? As Ms Perry put it, "You held me down, but I got up, Already brushing off the dust. You hear my voice, you hear that sound? Like thunder gonna shake the ground. You held me down, but I got up - Get ready 'cause I’ve had enough..." 06 May 2014 - A World on Fire There is a song written by Sarah McLachlan which affects me deeply yet it is beautiful and I wish I could hear it without feeling the pain of it so acutely. These past few weeks at Hopeworks have been spent discussing the gaps in the healthcare system and the devastating fallout these gaps can have on those under its care - terror, grief, isolation, confusion, sorrow, betrayal. When I hear this song, it reminds me of these people and all those who have gone before, who have navigated the oft confusing, overwhelming systems that we have in place. They have encountered great people with great skill, and equally people who seem to have forgotten their own pledge to 'above all do no harm'. As a society we surely must have an obligation to ensure that those who are suffering are met with competence, compassion and kindness. We surely must have an obligation to speak up and to take action when that does not happen. So why do we get push back? Why is it that speaking up about mistreatment or neglect results in the chastening of the very person who had a promise of care broken? And what do we do? Next week Hopeworks begins the first of (I hope) many meetings which seek to address these issues. I hope sincerely that we can have open, honest conversations about what is working and what is falling hopelessly short. I hope that we will be heard, and not just listened to. There are too many people walking the wards each day for it to not be important to start these dialogues with the view that each conversation will bring the needs of the sick to a level of importance that is in line with the needs of those providing the care. Until we can find a way to bridge the gap between what is required on a spreadsheet, with what is required on a human level, then we will not to justice to those I believe we have an obligation to protect.  Hopeworks long term goal is to be present in every classroom where someone is studying medicine. We will be in every hospital where medicine is practised. And we will be in every GP and specialist office in this country. We will put a face to these diseases, and paint a landscape that details the rich emotional, spiritual and physical layers that make us all who we are. It will only be through the eyes of someone who recognises we are human, that we will ever receive true treatment and healing in line with our individual needs. "Hearts are worn in these dark ages, You're not alone in this story's pages. The light has fallen amongst the living and the dying, And I'll try to hold it in, yeah I'll try to hold it in. The world is on fire and it's more than I can handle, I'll tap into the water and try and bring my share. I try to bring more, more than I can handle, bring it to the table, bring what I am able. I watch the heavens but I find no calling. Something I can do to change what's coming. Stay close to me while the sky is falling, don't wanna be left alone, don't wanna be alone. Hearts break, hearts mend, love still hurts. Visions clash, planes crash, still there's talk of saving souls, still the cold is closing in on us. We part the veil on our killer sun. Stray from the straight line on this short run. The more we take, the less we become. The fortune of one that means less for some..." You can watch her amazing video here 3 May 2014 - The big threeFatigue is the domino that starts every chain reaction. It is not comparable to ‘feeling tired’ or being ‘worn out’. Brain fatigue feels like your body is made of lead and your head is full of cotton wool. The best comparison I can offer is when you get a bad case of flu and the only thing you can do is sleep. A very important thing to know is that fatigue usually is delayed by 12 – 36 hours after an activity in the case of brain injury and chronic fatigue syndrome. In the early days it can be really hard to understand as you cannot see a cause and effect. At the time you are doing an activity, such as school work or sport, you can feel fantastic and not impacted in the least. It is not until a day or two later that the cumulative effect hits and can take a day or two to pass. At the extreme end of this, you can begin to feel nauseous. Two things work for me when I get to this point: an immediate hit of sugar such as a chocolate bar, and then as soon as possible getting into bed and forcing myself to go to sleep. When I wake up a few hours later, I usually feel much better and can continue on with my day. My (non-medical) philosophy is that the sudden sugar hit interrupts the rapid downward spiral and somehow alters the chemical/physiological cascade that is happening. As your body is going into a ‘fatigue crash’ getting that deep sleep is vital as is allowing the person to wake up naturally when his body has determined that it has had enough rest. If you can allow people to do this when they are feeling unwell, they will hopefully get through these crises with minimal impact. Helping develop body awareness is also very important, and is something support persons can definitely facilitate. Conventional rules around what times of day to have sleeps, or for how long, can be thrown out the window. The body knows how to heal itself, but needs to be given the opportunity. Common signs of fatigue include - impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. If you think that a person is having spikes and dips throughout the week, then keeping a diary of events could prove really useful. Track sleep/wake times, hours on technology, reading, sport etc and see if there are patterns that fit with delayed fatigue. You could also try adding a small snack such as nuts or a glass of milk/juice at shorter intervals – say hourly – to see if there is a positive effect on sustained energy levels. I know this works for some people. High dose vitamin-C is also good (but check child’s dosage levels with a pharmacist first). One of the greatest analogies I have been given around fatigue is this: A person with a brain injury is like a car with the fuel gauge pointed at empty. There is a certain amount of gas still in the tank but you can’t really tell when it’s going to run out. If you keep a steady pace and forsake all the optional extras then you will hopefully make it to your destination. If however you keep the stereo on (processing sound) or the air conditioning (processing temperature changes) then the gas will be consumed faster. Likewise if you drive erratically with either the foot too hard on the accelerator or too quick on the brakes, you might find yourself sputtering to a sudden and unexpected stop long short of where you want to be. Pacing is extremely important. As an example, if you were to play, say, an 18-hole game of golf on a Monday, you may end up spending Tuesday unable to rouse yourself for the slightest task. If however you play two games of 9-hole golf on a Monday and Thursday, you might find that not only do you get to enjoy what you love twice as often, but that you have the energy to make the days in between enjoyable too. There are all sorts of books and advice on how to pace yourself by living in the go-slow lane all the time, avoiding stimulus whenever possible, but in reality this level of micro-management can quickly become boring, frustrating and impossible to sustain, especially for a 12 year old boy. I know few people who enjoy life this way. It really just comes down to being mindful; stay away from too much stimulus as much as you can and then plan rest breaks and a sleep in for the days after you can’t avoid it. Bear in mind too that anything visual – reading, TV, computers – is ‘work’ for the brain, and as such getting outdoors, playgrounds, beaches are actually more restful. Most people with brain injuries and/or chronic fatigue also experience heightened sensitivity to light, sound, touch, temperature and taste to varying degrees, which seems to be a processing fault. Without the ability to filter these, when fatigued we experience a bombardment to our senses to the degree that it can feel like everyone is screaming at you, even when it is just a quiet dinner table discussion. Initiation - This is a big one for brain injuries and those I've met, with almost any neurological condition, all have this to some degree. For most of us, we want to be able to get things done each day, but sometimes when we are presented with a task our brains don’t seem to be able to take that data and sort it into logical steps. For example, we may see the grass needs mowing and know that it needs to be cut. For “normal” people, the process is obvious and simple - change into suitable footwear/clothes, walk to the shed and unlock the door, get the mower out and attach the clippings bag, check the petrol or electricity supply, start the motor, plan the path and you’re off! For people with brain injuries, it can look more like this:  Some days I can successfully remember all 7 steps and put them in the right order; but other days the strain of trying to remember them all leaves me unable to remember any. How you can help – Try and remember what it’s like to learn a new skill or to re-master an old one. I recently started riding a bike again, and the first few times I consistently forgot my helmet, forgot to check how much air was in the tyres, and to be honest, got seriously confused about how to lower a bike stand, as mad as that sounds. But over the next few weeks, as my muscle and cognitive memories kicked in, a light bulb would go off and I would spontaneously remember 1, 2 or all 3 things. Walk the first few steps of a task with someone. Oftentimes once we start, you can’t stop us. We have found our mojo and are committed to what we are doing. The scrambled 7 stage list may only need to get down to six before we see the steps clearly; other days it may not click in for us until we only have three steps to remember. But if we know that we are being supported and not made to feel stupid or useless, then we see it as a success that we can build on each time until we master it once again. Exercise: As oftentimes words don’t adequately explain the “feeling” state, this little exercise can let you experience what it is to be on either side of this coin. To start, write a list of seven words on a piece of paper, like this: Snake, Adder, Boa constrictor, Rattlesnake, Python, Black mamba, Cobra These represent any number of lists that ‘we’ – as brain injured or potentially dyspraxic people – encounter each day, whether that be a sequence we need to follow (like the lawn mower task), or a school task, or just basic daily living tasks like brushing our teeth, getting dressed, collecting the mail, checking emails etc.  Someone can read these out to you and your job is to remember them in order. Repeat this process until you have them memorised. Keep note of how many attempts it took to remember all seven in order. This is useful as it shows how hard it can be for us when presented with new information, especially when it is only presented once – for example, during introductions in a social setting, or when given tasks for that day. While the content may seem basic, retaining that information for any length of time can be really hard when your cognitive functions are impaired. Go about your day as per usual, then after a half hour delay, someone will ask you to recall this list again, and in order. Lastly, you will be asked to put those seven items in alphabetical order in your head without writing them down, and then repeat them back. This is useful because it demonstrates what happens in sequencing and the ability to put tasks in order – whether that is order of importance, or order of urgency or geographical order if we are moving around a setting such as a school. Most times we are asked to do these types of calculations in our heads which is not easy and often results in an inability to start, as we simply can’t find the starting point. Of course, you may have a cracking good memory in which case you will fly through this without delay, but I am sure you will understand the mechanics of what the exercise is trying to do. I have used this exercise on a number of people to help them understand what processing can be like for me. They usually enjoy it far more than I do in daily life, novelty that it is, but in watching them navigate the exercise, I realise that new information is hard for everyone; the only difference is that eventually it will stick for “normal” people, whereas more often than not we need a tool or strategy to help us. Being faced with an occasional challenge such as this, we can usually enjoy it and laugh about it, but when it happens frequently, frustration mounts and it is no longer funny. Add fatigue, headaches, nausea, background noise, and overstimulation….and even the best of hopes and intentions fall apart under the stress. Coming up with strategies or tools that a person can use, especially in busy settings such as a school or office, will be of enormous benefit and will mean they can put their energy and focus into the task, without worrying about how to go about it. So what do we know about these conditions and how they affect people? Well, there are some obvious similarities between many. For one, the diagnosis of any of these conditions is going to have a profound, often life changing, impact on not only the person diagnosed, but likely their family and friends as well. For the person diagnosed it becomes a new world filled with new words, jargon, sensations and experiences, that can at times be overwhelming, terrifying, confusing and lonely to encounter. For the families and friends, it is also a confusing time. They are coming to terms with physical, emotional and sometimes spiritual, changes. For those of us who have come up against sickness or injury, we have new bodily sensations reminding us of what is happening. For those watching, there are no such signals and in the early days no outward presence that indicates something is wrong.  It is here that a lot of stress manifests. As someone with an injury or illness, it is disheartening and upsetting when those who are charged with, or offer, their care "forget" that we are sick or in pain. Adjusting to this new situation is hard enough without having to feel guilty in addition about needing to constantly remind others about what we are going through. After a point, it can be easy to feel neglected, lonely and unheard when our loved ones carry on as usual, unconsciously reminding us about what we are either missing out on temporarily, or in some cases, permanently. I remember a number of times when I have felt resentment (no, I'm not proud of it) at those around me who have watched the worst of my days, yet have thought nothing of telling me the joys and happiness of the world they get to live in. Is it fair or reasonable to feel such anger towards people who are going about their daily life, just because I can't? Probably not. Is it too much that I expect others to be thoughtful and consider the weight of their words and actions around me? Almost certainly. The reality however is that it feels akin to seeing people dance around the perimeter of a prison yard saying "look at me and all my freedom!!" Yes, it's true, and by virtue of having not fallen on desperate times or a moment of poor judgement, they might have a right to be pleased about their freedom...but can that not be something they speak about with others who are experiencing that same freedom, rather than with those jailed behind bars with little, or no, hope of ever experiencing it. I have sadly heard many inappropriate and insensitive comments out there in the real world. People talking about a great walk they'd taken around someone in a wheelchair; or holiday highlights around people who are housebound; the ease with which their children learnt to read around families struggling with dyslexia; families excitedly talking to their relatives in hospital about the fantastic Christmas dinner they are heading to while the patient stares forlornly into their hospital meal; and worst of all the endless unhelpful and uninformed advice about what someone would do if they were in your position - as if they have any understanding whatsoever of what that means. Yet - these same people do not turn to a recently bereaved and say something insensitive, nor do they gloat about their perfect relationships to someone who is recently divorced; they wouldn't dare joke about miscarriages or cancer - that, after all, would be grossly inappropriate! On the contrary, they change how they act, how they talk, how they listen because these are situations where they can understand what it might be like in that person's position; or in some of those cases perhaps it is just that they realise the social convention of what not to do. Why does this 'natural' adaptive behaviour not apply to the sick and disabled? Is it because they are afraid, because the person can't find back, because they genuinely do not care? What is it that makes the divide between well and ill so very large? What does this suggest? It suggests that the world of the disabled and sick are far removed from the world of the 'healthy'; it suggests that society has lost its ability to be compassionate and understanding; it strongly suggests that many have perhaps never learnt how to truly listen and lack the desire to really know the truth; and that as a country we are hopelessly uninformed about what other people's lives are like. I was always taught that it was our individual responsibility to look after those who were weaker than ourselves (animals included), because it could just as easily be me in that situation (oh the irony!). So that's how I have gone through life. I don't understand those who are uncomfortable around people with limps, or lisps, or different ideas - if anything I find them refreshing and interesting and full of experiences that I would rather know more about than less. Why is that not what the majority think? Is it really a minority opinion? "Science may have found a cure for most evils; but it has found no remedy for the worst of them all - the apathy of human beings." - Helen Keller Brain injuries are often called invisible illnesses because a lot of those who have sustained them look 'normal' from the outside. We have one client who was in a car accident and was left with residual paralysis on one side which meant using a cane. For him, he said the limp was what got him the sympathy and attention, when in reality it was the part of his condition that he was least bothered by. It is the changes that happen on the inside of the body and the brain that are the most damaging and the most painful to come to grips with precisely because they are unseen and unknown.  For a lot of our clients, they are facing conditions for which there is not always a known cause or known cure, but yet they are having to come to acceptance that they are irreversibly changed; and that there may or may not be a solution on the distant horizon. That, I can tell you, is a very hard place to be in. I am now 17 years post accident and I still fight that battle of acceptance on an almost daily basis. I continue to try everything I can find to 'cure' me with success at times, and no success at others. The frustration this causes can get to be so great that it is hard to stay positive and believe that it will ever end. But equally it is almost impossible to not search for new potential cures. Who doesn't want to get better? Alongside this frustration is deep layers of grief that cycle around in circles year in, year out. What most support persons and medical staff can't know is that the loss of who you were is the heart of everything you are going through. The frustrations are based on losing the skills and abilities you once had, the dreams you may never realise and the changes that have been forced upon you that you did not agree to. So, we grieve and we go into these dark spaces, and we try to keep moving forward and through them. Over time, it is easy to let some of these things go. Part of this is that we are always changing and evolving through our life experiences, and maybe the dreams of being a dancer at 16 seem less important at 34. Sometimes we find we have found a new path not yet thought of, that fits better our circumstances and talents. I would never had guessed that I would be a voice for the brain injured, but yet here I am, and I don't think it's all that bad. I still have moments of regret at what I could have done, what I think I would have liked to have done, but then I realise that equally I may not have enjoyed those dreams as much as I liked the dream itself. Perhaps I am where I was always supposed to be? 28 April 2014 - In the darkness, a lightToday was spent filling out grant applications and trying to get across what exactly Hopeworks is here for. Unfortunately this usually has to be done within a set number of words and Hopeworks isn't always so easy to encapsulate. So what does Hopeworks mean to those who don't know us?When the idea for Hopeworks came to me it was during a very down time in my life when I was particularly sick and particularly frustrated. I was working for the charity that supports people with Motor Neurone Disease - the disease that had just claimed my Dad's life. I had spent the previous several years caring for him, while simultaneously trying to care for myself. I had been living with my own brain injury for six years but had only just received the diagnosis some five years late. I realised that the two were almost impossible to juggle. How can you not give everything to the person you love and want to care for, when at the same time you know that you need to hold something back for yourself and love yourself too? I never managed the juggle and suffice it say I got very sick, very fast. Following my Dad's funeral, I collapsed in on myself. The momentum that had somehow carried me through the previous five years suddenly disappeared and I found myself overwhelmed by what was happening both inside my body and inside my mind. I dedicated myself to finding out more about my condition, but soon discovered that there was no single place that answered my questions. In fact, 12 years later, I can say that I have still not found what I want to know despite reading hundreds of research and information sites, dozens of books and every other documented fact I can find. But yet...I did eventually find others like me, and it was through them that I heard my voice coming back to me. I heard through them the same frustrations, fears and questions, and strangely, knowing that others were seeking the same thing as me gave me hope that the answers could be found.  Hopeworks was a way of reaching into that darkness and building connections. Building a framework that could slowly piece together the gaps that hinder our healing, the gaps that prevent us from having our questions answered, the gaps that allow this injury to take hold and not let go. Some are lucky to have not lost themselves or their hope for the future, some have wonderful caring friends and family who bolster them and allow them a sense of connection, some have even recovered through the passage of time or good medical care. To them, I would say please come and be a voice for others. Because there are many, myself included, who live week to week, day to day, or hour to hour. Time now means something different. It is a measure of how many times I have pulled myself up off the ground - 6,338 days in a row. It's not okay that this is the reality of so many. It is not okay that many are doing this alone. It is not okay that help is so hard to find. It is not okay so may feel misunderstood and scared by what was never there fault to begin with. This is not an easy road and it should never be one you have to travel alone.  02 April 2014 - Birth of a blogOne of the hardest things about having a brain injury is in trying to not only have others understand you, but to understand the new world around you. These two simple ideas may not seem that difficult to those watching from nearby, but the reality for those of us living with these conditions is that they are ultimately the two things that have been brutally taken away from us, and for which we have no guidebook. I have always said I would start a personal diary to share my thoughts with others who may seem themselves in my everyday experiences. In my interactions with Hopeworks Clients I always add a section called "What I know to be true" which gives what I hope is an insight into the truth of a problem. It is all very well to be told that someone can't do things such as sequential planning - but who on earth knows what that means through the eyes of someone living it! The information tit bits that are fed from the medical world do not seek to give meaning to these titles and that irritates me. Perhaps its because they themselves don't fully understand? Perhaps they don't see such things as that important when placed next to "bigger" problems such as mobilisation? Whatever their reason, it leaves us misunderstood and frustrated that day to day quality of life measures such as being able to express ourselves are so poorly articulated by those with all the supposed knowledge. I hope I can shed some light and humanise some of these words and ideas for you....  Kate - Founder, Hopeworks Foundation31 March 2014 - the Grand Challenge ...there is a lot to report however! This past Saturday we had another great Brain Day here in Auckland where we once more got to spend a lot of time meeting new people, re-meeting old friends and generally catching up on where all the other charities and NFPs are up to. Although there have been a number of changes this past year for everybody, it seems to be mostly positive and everyone seemed genuinely passionate and energized by the help they were continuing to offer and the impact that that was having. It is such a great community to be a part of as it seems to attract genuinely warm hearted people - what's not to like about that! In two weeks time it is the annual Disability Expo in Hamilton and we are going to try to get down there and get amongst it. Last years was so inspirational to me as I got to stand with my daughter and watch as dozens of disabled youth played and talked together in an arena that was completely supportive and receptive towards them. It was quite emotionally powerful as you reflected on what was possible, and I hope that one day what I was watching there that day is able to be reproduced out there in the "real world". It was a day I will not forget for all the right reasons, and it validates and motivates what we are trying to make possible here at Hopeworks. Last year we were told by one person that my dreams for Hopeworks were too big and as a result not possible - I disagree. I believe that those whose worlds have been shrunk due to circumstance deserve the biggest dreams you can make happen. If the sky is the limit, then why would I drop the sky to a "manageable" height?  I want to extend a big thank you to COGS Auckland and Manukau who saw our vision and took a leap of faith on us with combined grants of $2800. This was a fantastic result, and while it might not sound a lot, the vote of confidence was priceless to me. Its not always easy to condense an idea into a few short paragraphs and have it understood - so I applaud these two committees for being able to see the picture I was trying to paint. Through their generosity we have been able to finish our logo which we proudly rolled out at Brain Day to many ooohs and aaahs :) Speaking of leaps of faith - we got a call a little while back from an amazing guy called Stewart who had decided to set up an event whereby him and some friends would purchase cars under $1000, then drive them (with fingers crossed) from Auckland to Invercargill to raise awareness of charity. Lo and behold he had chosen Hopeworks as one of them - how cool is that! They are currently in the South Island, having a blast, and getting our name out there: "The Grand Challenge! In the spirit of Top Gear, and in collaboration with Rotary and CarJam, 6 cars costing less than $1000 will drive from Auckland to Bluff on a fund raising adventure … which car will be most reliable? Who will make it to the end? All this and more in the Grand Challenge! Check out the route to see if the team are coming near you. They will be updating their Facebook page as they progress down the length and some of the breadth of this country!"  We also introduced a new Trustee by the name of Dean Fox who has come from a strong background in business as both former CFO of Cognition Education (a leading consultancy focused on educational thinking, design, and impact) and now CFO of eHomeGlobal (specializing in the manufacture of affordable homes for New Zealanders). Dean has jumped in with both feet and is a perfect fit for us. We have had numerous new referrals on a one-to-one basis this year as well and as always I find this very humbling. It is not easy to share such personal experiences of pain and heartbreak with a stranger, but this wonderful group have done just that and trusted that I would treat that with respect. I cannot tell you how seriously I take that responsibility nor how honoured I feel to be able to be a part of their lives. I hope that the strides we have made together continue them down the path that they worked so hard to forge - a place where they remain empowered, informed and in charge of their experience. It is such a wonderful thing to watch happen. We have also finally set up a donation page where you can donate online - we hope that those that agree with our aims will consider donating - http://www.givealittle.co.nz/org/Hopeworks We have also begun making strides into the possibility of protective headgear for boaties. This came about from a referral we had and led to much conversation and collaboration with many high level organisations such as NZ Coastguard, the UK's Royal National Lifeboat Institute, Gecko Headgear and locally Hutchwilco. It is a new direction for us, but fits with our general education goals that we have traditionally worked towards in the area of road safety alongside RYDA. I am excited about where this could all lead! Last - but not at all least - I want to reprint here my thank you's from our newsletter HopeWords, because I don't believe good people can ever be thanked enough.. For their enormous support and help with our Dystonia client, I want to extend my thanks to Dave Mitchell (Dystonia NZ), Joel Perlmutter (MD, Co-Director of the Dystonia Coalition), Blayne Jeffries (Dana Foundation), Judy Blazer (Executive Director, WE MOVE), Noel Valero (Founder, American Dystonia Society), Nilda Rendino (Chair, Dystonia Advocacy Network), Janet Hieshetter (Executive Director, Dystonia Medical Research Foundation), Ms. Rogers Hartmann (Greenway Productions), Howard Thiel, Alistair Newton (Executive Director, Dystonia Europe), Jessica Feeley (DMRF), Rachelle E. Robert (Director of Operations and Scientific Liaison, The Bachmann-Strauss Dystonia & Parkinson Foundation, Inc.), Charles H. Adler, M.D., Ph.D. (Professor of Neurology, Mayo Clinic College of Medicine), Verona Butler (ADDER), and Marian Emr (Director, National Institute of Neurological Disorders). For their help with our brain injury clients, special thanks to Denise Powell (ACClaim Otago), Margaret (Christchurch Brain Injury Assn), Cathy (Brain Injury Assn Dunedin), Anna-Lee McLeod (Field Officer, Epilepsy NZ Canterbury/West Coast) and Steve Jenkins (Headway Auckland). Your determination to improve the lives of those with Brain Injuries is so welcome and I look forward to working with you all again. A huge thanks must also go out to Patrick Holmes (CEO, Coastguard NZ), and Robbie Warrington and Paul Savage of the Royal National Lifeboat Institute who have given enormous amounts of their time and support to us - my heartfelt thanks. Thanks to COGS Auckland and Manukau for believing in Hopeworks and awarding us some much needed grants. We look forward to updating you on our progress. Lastly, we have continued to have really helpful meetings with NZ non-profits and service providers, including Aphasia Association of NZ, Cerebral Palsy Society of NZ, Dyspraxia Support Group NZ, Dystonia Patient Network, Associated New Zealand ME Society, Motor Neurone Disease Association, Parkinson’s Auckland, Stroke Foundation (Northern), Headway Auckland, Rope Neuro Rehab, RYDA, Protecta Insurance NZ and SPELD. Thanks to you all for your continued support and help." 11 September 2013 - Building BridgesWell, its been a fair while since I last wrote and Hopeworks has moved along quite a way since then! We have continued to build the Brain Hub, and have extended our plans to soon include a Marketplace where you can find anything and everything that is on offer around NZ. The holistic health section is now almost complete and includes contact details, maps and listings around the country that you can access. Earlier this year we again went along to the Auckland Brain Day and the Auckland Disability Expo. Both, as usual, were great opportunities to have conversations and enjoy all that is on offer. We have continued to build relationships with NFPs and Service Providers around the country and have had some really productive meetings with Dystonia NZ Patient Network, Parkinson's Auckland, Rope Neuro, Aphasia Assn of NZ, Cerebral Palsy Society, MNDA, SPELD, Headway, Dyspraxia Support Group and the Stroke Foundation to name a few. The list is long but we are well on our way and looking forward to getting to know the great people working behind the scenes to help those of us with disabilities. I cannot express enough how valuable these groups are and how wonderful and passionate they are. We have applied for several COGS grants and if successful, these extra funds will help us build the Brain hub, our services and our relationships faster. Fingers crossed! We have begun compiling an Events Calendar that we hope will prove of great benefit, and will eventually include all important dates and times for nationwide support groups, AGMs and events. Our first three case studies will be going up shortly detailing the work we do with individuals and families, as well as non-profits. You can access these from the main menu. That's all for now... Take care 19 March 2012 - The Big Day OutThis past Saturday, I had the great pleasure of attending the annual 'Brain Day' at Auckland University, where I introduced Hopeworks to participating Not-For-Profit's, support organisations and research and funding groups. The feedback was amazing! It is apparent that not only does Hopeworks have a valuable role to play, but that it is both timely and much supported throughout this community. I really enjoyed speaking with everyone and seeing the huge advances that have been made over these past few years since I last attended Brain Day. It was clear that the motivation and will to continue creating positive change has not been diminished at all by the recession, which I know was a huge blow to everyone. It left me feeling truly humbled and proud of what can be achieved, in even the most challenging of times. I am really looking forward to working with everyone I had the pleasure of meeting and expanding the Hopeworks Brain Hub. Your feedback and input will be enormously valuable in ensuring that the end product is a User friendly resource library packed with information. I hope that together we can encourage everyone to get involved and begin getting client feedback up on the site. Real stories will be the most valuable information of all. I have also recently been in discussions with the NZ Police and NZTA regarding the creation of road safety guidelines to help those with neurological disorders and injuries. I believe this will eventually lead to a much needed tool for families and carers, as well as the medical profession at large. If you want to put forward any suggestions, please get in touch. Lastly, I attended the RYDA programme last week to give talks to students around road safety and the reality of living with a brain injury. These sessions are always a double edged sword for me as on the one hand they highlight the pervading 'bulletproof' mentality of teenagers today, while on the other hand I can leave knowing that in partnership with the Police and other Speakers, perhaps our stories have helped save a life. This is such a great learning experience for teenagers and is extremely well run. |
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