A Warning: The Need For That Self Reliance (Part 2)

Here is part 2 of the update I posted last week. Part 1 covered the current cutbacks that are being made to the National Health Service in the UK under the current government. Today, I will be focusing on the availability of employment and the cuts to the welfare state under the current government.

Work & Employment

Another place in society where we need to acknowledge a disadvantage, especially at this time of transition in the UK, is in the job market. Layoffs are becoming commonplace in most industries and the job market has become more competitive; it is simple math, more people applying for fewer positions.

In this more competitive market, when looking at it from the point of view of employers, it kind of makes sense that they are becoming more selective with candidates and using higher standards in their hiring process. Whilst I hate to admit that, we do have to acknowledge it. This philosophy does make it more difficult for people like us, people with permanent disabilities, to find manageable, appropriate, employment. Why would you employ disabled person? When you can hire a fully able to person with a lot less chance of problems in the workplace. Which leads me to…

Subconscious Prejudice

Part of the difficulty for a disabled person in trying to get back into work is, and I’m just going to put this out there, the presence of prejudice. Subconscious prejudice maybe, but prejudice nonetheless. Often, employment can either be terminated or an application rejected because of the potentials for difficulties that have to be allowed for regarding disabled people; more likelihood of days off, more safety concerns in the work place or, in the mind of the opinion of the employer, a higher likelihood for accidents in the workplace. Whichever way you look at it, the difficulties of hiring someone with a disability like ours far outweigh the positives in the minds of employers. It would be far easier to hire and employ someone without our kind of health problems when there are so many people, fully-abled people, out there looking for work. At this current time, it does not necessarily come down to qualifications or experience but convenience.

If I may provide an example for my own life, I had been hired as a server at a gastro pub. A job that combined work and foodservice I had gone past the twelve-week trial period by around three weeks and nobody had spoken to me regarding my work performance. As far as I was concerned, everything was fine. That is until I had a seizure at work. I was given a few days to recover and after those days rest I went to the pub to tell them that, as far as I was concerned, I was ready to return to work.

At this point I checked the work Rota only to see that my name and my scheduled shifts had all been crossed off. The manager then approached me telling me that the owner wanted to meet with me. I was very suspicious at this point but did as I was asked. As I sat down with the owner I was informed that my services would no longer required. I requested a written letter listing the reasons for my dismissal, none of which were really legitimate reasons. It seemed obvious that I had been laid off because I had had a seizure in the workplace. However, There was no way I could prove it and due to the short amount of time I had been working there, according to the citizens advice bureau, I was not protected by the many workers right schemes so there was little legal recourse I could take with a realistic chance of success. It was just something I had to grit my teeth and bare.

Benefits & The Welfare State

This is a fairly obvious one. We have all seen the recent crackdown on those who are beneficiaries of the welfare state. Once again these money-saving/making tactics seem to be aimed at taking advantage of the poor, the ill, and generally vulnerable.

Claiming money for ill health (whether physical or mental health problems) has developed a stigma and there is now a scrounger type narrative that surrounds it. With regards to how it is dealt with and treated in this country, it seems now to have become less about helping people and more about meeting quotas and ticking the right boxes. The challenge being to stop people from getting money and accessing services that are necessary for them to get by in the hope of saving money to meet monthly quotas and budgets.

This is by no means a criticism of those involved in the systems I have mentioned. The people that work in these institutions and frontline services, to some degree, have their hands tied by the rules, quotas and targets of the current government; to save money at all costs.

Looking Out For Number One

I hate the subtitle for my own conclusion. This is something that I am fundamentally against in terms of a mentality. It seems though that it is a mentality that is becoming increasingly necessary for people like us. All of the things I have mentioned above are a part of what makes this country such a Great place to live. Whether it is the health service or the welfare state, the safety net that was once there to keep all citizens from falling through the cracks is seemingly, slowly being removed. The country that we live in, where we could rely on the fact that, should the worst happen, there is a structure in place that would ensure we could not fall through the cracks, is slowly being disassembled to ensure the government makes as much money as possible. Whether that is through cuts to welfare, to frontline services such as health, education and policing or the privatization and selling of public assets. So it seems that if we want to access the things that we want and need, we need to go out and get them ourselves, for our own sakes or for the sake of the loved one we are fighting for.

Please Excuse Me…

This post has not been as specifically brain injury orientated as all of my previous ones have. I am sure you have noticed the changes that are happening in our great country right now as a result of government policy. The reason I chose not to aim it specifically towards brain injury patients is because all of the above issues affect not just the disabled but so many (as in the working class, the working poor, the young, the old as well as the disabled) so I have tried to keep this post broad. I apologise if you feel as though I have just been venting and that this has had a political agenda, I can honestly say, that was not my intention. I felt it my responsibility to highlight the fact that all of these issues do affect us and I felt that this was a warning that needed to be given. Before we know it, if we don’t stand firm and take action and responsibility ourselves, the removal of the services could be completed without us really being aware, turning “Great Britain” merely into “Britain”.

A Warning: Why We Need That Self Reliance (Part 1)

My name is Tom; and 26 years old and a survivor of an acquired brain injury. The last few weeks I have been looking at aspects of change in our lives as a result of the type of injuries we had sustained I have also tried to elaborate on the subject of self-belief and self-reliance, these factors being key to the recovery process. The subject of change will continue in this post but it is most certainly a different type of change. I am talking about the current change that seems to be occurring in our country (the United Kingdom).

As the victims of brain injuries we have to come to terms and learn to live with changes that have been enforced upon us. Whether those changes were the results of some kind of accident, crime or just a random piece of bad luck, the changes to us undeniably make our lives more difficult. As a result, and I say this not to be pessimistic but simply speak the truth, we often find ourselves playing catch up in most aspects of life. Following on from this, we have to acknowledge that we do require a certain amount of assistance in life from our friends, family as well as from the state.

Unconditional Support?

What I like to think is that the love and the help we receive from our family and friends won’t go away. However current changes being enforced by our government mean that is even more difficult for people such as us to access and obtain the services and help that we require. I am sure you are aware of what is happening regarding cuts to frontline services such as police, education I’m the National Health Service. I do want to share with you some of my own experiences of dealing with certain services, particularly the NHS, as well as providing certain facts regarding the cuts that have been made during this period of austerity. I believe that this post is a good way to follow on from the theme of self-reliance and independence because it seems, at this current time; the state is relying on your ability to be independent and self-reliant. I would consider this post to be something of a warning but also statements of fact, showing that this is not make believe or paranoia, that at this moment in time people with disabilities such as brain injuries are up against it more than ever.

The Reality Of Cuts To The NHS: What Is Happening?

The reality of these cuts to services, Services like the NHS, is that we are all ultimately worse off. We are all worse off in the sense that financial cuts to services media less efficient and less effective service to members of the British public. While the government maintains that they have not made redundancies within the NHS and have pledged to protect such frontline services, since the Conservative Party/Liberal Democrat party Coalition came to power in 2010 and up to the year of 2013, 7060 clinical staff including doctors and nurses had been made redundant.

These job cuts have resulted in a shortage of trained nurses in our national health service, meaning that we are relying increasingly on private agency nurses. All of these cutbacks and redundancies are part of an ongoing challenge to try and save £20 billion from the NHS budget, pushing forward with the conservative party mantra of “doing more with less”. The idea that a machine as large and complex as the National Health Service can do more with less trained staff, less funds, more rules and restrictions as well as more bureaucracy, is a ludicrous one.

Follow the link to see some of the job loss statistics that have occurred since the coalition government gained power. Bear in mind that these stats will most likely get worse with conservatives now a majority and without Nick Clegg and the Lib-Dem’s holding the Rottweiler’s chain.(http://www.theguardian.com/society/2013/dec/31/nhs-staff-laid-off-amid-savings-drive).

With an increasingly large number of GPs leaving the profession, waiting lists getting longer, times in the waiting room and times for referrals getting longer, decreasing Numbers of applicants for nursing training and huge cuts to mental health services, it seems as though the National Health Service that We love so much and that we are so proud of is being handicapped, disassembled and deconstructed by the people in charge for the purpose of financial gain.

If you follow the link below, you will find a list of statistics and facts provided by the blog of the Trade Union Council that informs us of the way that the NHS is being stripped down and the effects it is having on frontline NHS services.


A Real Life Example

I touched on it briefly earlier when I spoke of the cuts to the many frontline services in the UK that are used by the majority of the population in one way or another, the waiting time for referrals. Here is an example that

One of the issues that affected me, probably the most actually is a problem with my mental health: depression, anxiety, anger and unpredictable emotional responses. The first two I listed were probably the ones that affected me the most. There were many contributors to the issues I think. There is the obvious one, the head injury itself and all of the loss that comes with that, the change in personality, the loss of certain abilities, the trauma that came with how the injury occurred (a physical attack). As well as those issues there was also the fact that I had been due to go to university and I was now no longer going, was feeling isolated and alone because we had moved to a new town and had (just before the injury) undergone my first case of romantic heartbreak.

All of these issues combined were obviously quite overwhelming for me. I don’t want to bore you with a detailed timeline of my mental state, but the first year after the injury was spent focusing on trying to come to terms with my injury, re-acquiring certain life skills that had been lost (i.e. my ability to read) and find ways to counter some of the physical issues I was dealing with (such as issues with my sight which had been badly affected by my injury). Due to where my attention was being focused I don’t think I was fully aware of my issues with depression. I also believe that I wasn’t aware of what depression was, why I felt so low, why I felt moody, craving alone time while feeling lonely at the same time. So the issue regarding mental health was not really addressed or acknowledged until I attended university.

When I arrived at university I was to meet with a counseller each week to discuss anything that might be bothering me on an emotional level. It was there that we realized that I was suffering from depression (and quite badly I might add). As we continued with these sessions throughout my three years at university my issues with depression started to ease. At the time I left, I was probably felling, within myself, the best I had done for a long time.

It was when I returned home that issues start to crop up again. So, at the next appointment with my neurological consultant, I requested a referral to the local neurological psychology service. After six months, my parents and me had a sit down, something was definitely up. We decided we would take matters into our own hands and self refer. We managed to eventually come away with an appointment after many phone calls and letters.

It was when I had been going to a few appointments that my psychologist was late for one of our scheduled sessions. When the doctor arrived, they informed me that, the reason she was late was that, there had been traffic on one of the roads between her previous appointment and the office at which I had been waiting. The distance between the two was approximately fifty miles. In our session, she went on to say that she was the only neurological psychologist on the staff at the NHS neurological psychology service and that she was responsible for attending to the needs of the entire county.

If you follow the link you will find a story regarding the budget cuts to mental health services in the UK. http://www.bbc.co.uk/news/health-31970871

Something Wrong

Now, if you ask me, there is something terribly wrong when the needs of patients in an entire county rest on the shoulders of a single person. I think that this doctor deserves immense credit for the work she does, in fact everyone who works in the NHS deserves credit for working within a system that, at present, has to operate blindfolded with both hands tied behind its back due to financial constraints of a government system.

This is where I will leave you. On my next post, I will be looking at other areas that vulnerable people such as ourselves rely on that are currently under threat and that need to be protected, for the good of all of us.

Communication Between Parties

In my last post regarding the International Day of Peoples with Disabilities, I was trying to make it clear that for anyone who doesn’t struggle with the same type of lifelong condition such as an ABI, in other words are fully able, it must be extremely difficult to find the right way to communicate with us, the disabled. In the same post, I went on to say that those who have not experienced the type of life changing adjustment that comes with acquiring a disability, must have an impossible job in terms of trying to understand the experiences we go through and have been through as they have not experienced this type of monumental change.

I have considered these two points over the last week and as such the final carriage in my train of thought is this: if we, brain injury patients, are suffering with problems, fears and issues that our fully abled friends and family members cannot possibly hope to understand, how do we expect to be able to communicate and engage with them in a way where we treated with respect, courtesy and dignity?

Communication & Staying Informed

The biggest problem that is undoubtedly a cause of of the issues regarding communication, especially in the home environment, comes from the nature of brain injuries themselves, in that they are something of an unknown entity. Having spoken to my parents and other family members, they tell me that after I had my surgery and had been placed in an induced coma, they did not know how much of the old they would be getting back if and when I regained consciousness. Until that time they had had no experience in dealing with such a situation and were unaware of the potential consequences I could suffer from.

The effects of a brain injury are so varied, far-reaching, and surprising. So much so, that quite often, even the specialist doctors who treat patients are unwilling to commit themselves in terms of predicting any kind of potential recovery. Any kind of rehabilitation that is laid out comes in the form of a reactive approach, a type of “let’s wait and see” methodology.

When I was discharged from hospital after my injury, my parents had spent much of their time at the facility being informed of the impressive progress I had been making. My family was incredibly optimistic in terms of the feedback they had received from staff members who told them of positive signs I was showing and what that that would mean for my recovery. My family genuinely believed that when I returned home, after a period of months, I would be my regular self again and that the injury would have no real long lasting effect.

It did seem as though, upon my release from hospital, there was a significant breakdown in communication between the doctors and my family. During the discharge meeting my parents were informed about the significant physical problems that definitely would affect me in the future: permanent deafness and tinnitus in my left ear, losing my sense of taste and smell, as well as a residual squint and diplopia in my left eye. However, all issues regarding memory, cognitive processes, thought processes and speed of brain function were barely mentioned. It was not until a year after I left the hospital my parents were even made aware of the extent of the skull fracture I suffered, when my father asked to see a copy of my head x-ray.

Left In The Dark

This breakdown in communication regarding my actual brain function had a very large effect on the way that I engaged with my parents at home. This was mostly because of the fact that when I returned home, my parents believe that it was merely a matter of time before I returned to my old self. As such, my parents encouraged me to do different things in terms of trying to get out and about, trying to challenge me, perhaps in ways that were more than I could handle at the time. After a while it became clear that these tasks were too much for me to handle. If you were to place me in the context of a fully abled person, particularly emotionally, the way I reacted to small failures were hugely over-emotional. I was getting frustrated that I could not do things that had previously come naturally to me and I was also struggling to come to terms with the physical handicaps regarding my senses (in particular the issues with my sight).

After a few months, it became more apparent to my parents that leaving the house and going out in public would be more of an issue than they had anticipated. Even though my memory of the year following my injury is not the best, I certainly remember that when we did go out both my mum and dad had a tendency to be more controlling and overbearing than they were previously. Something my mother confesses to still having a habit of doing when we are out together now. This over protective nature can become frustrating and feel very patronizing, particularly in the immediate aftermath of a brain injury when you are still becoming accustomed to a new way of life and new limitations that have been placed upon you and you have not come to terms with those changes yet.

What we must remember, if you feel you are being treated in that way, the people who doing it are certainly not intending to patronize you. It does come from a place of genuine concern and love. The best way to solve this problem is to try your best to communicate with that person and tell them exactly how you feel.

The Memory Of The Old You

One of the things I would also consider a contributing factor to the change in the way you are treated is the inevitable change within you that comes with a brain injury. Before a brain injury, we were living normal lives, going to work, going to school and socializing with friends in our spare time. The people we have engaged with while we have been doing all of these everyday things have created an image, an expectation of who we are and how we should behave.

As a result of the brain injury we suffered, our ability to do certain things, to behave in a certain way, essentially our ability to live up to the expectation we have created in our previous life as a fully abled person has been removed. This change unfortunately makes people extremely uncomfortable, nervous and highlights their insecurities and lack of knowledge.

These people are aware of our situation, they remember the person that they had known previously and they also know that this person will have undergone a change in the way that they act and the way that they function. Most ordinary people actually, aside from the severity of the situation regarding an ABI, know very little about brain injuries and what suffering a brain injury actually means. Because of the severity that associated with ABI’s, people feel that they need to treat patients differently after the injury than they did before it because they are now different people.

In reality, what brain injury patients need is for people to acknowledge that they have suffered a life-changing trauma and for people to just be a little more patient with them and to accept that they are facing challenges every single day that they have never faced before. What we do not need is to be patronized, belittled or defined by our injury. What we want is to be treated in the same way we have been previously, for who we are as people.

Communication Between Parties

I can only say that after your injury, if you feeling patronized, treated like a child or undermined, the only way to address those issues is to calmly and carefully talk to and communicate your feelings with the people you feel are treating you this way. I can honestly say that if you get your point across to them in a way that they understand and that they can relate to, the vast majority of people will do their best to adjust their behaviour and think a little more carefully about what they are saying and how their words can be interpreted.

Brain Injuries & The Search For Information (Doctors)

My name is Tom Massey; I am 26 years old and a survivor of an Acquired Brain Injury. So far I have posted a lot on my own experiences of living with the after effects of an Acquired Brain Injury and what I have learnt about society and myself in general. This post will take a different turn. Over the next few posts I will be looking at how we can obtain information, the nature of the information we receive as standard and how that can help us deal with those after effects and hopefully enable us to take a pro-active approach towards our recovery. These posts will look at what we are told by doctors and how the nature of ABI’s can restrict and dictate the type of knowledge that is passed on to us.

Much of this information I will be passing on is knowledge that has taken me nearly six years to acquire. To start off, I believe that as human beings, there is something almost instinctive about the way we react when a loved one is in danger or is struggling. We want to help them. We want to obtain the appropriate knowledge to be able to make their life easier, to improve their situation. Such is the nature of people that we also want that information now, we want it instantly because we do not want to see that person go through any more hurt than they have to. We want to provide a solution that will save them from physical or emotional harm. In essence I believe that we are problem solvers.

The Information & Advice We Are Given

I have been visiting neurologists and consultants, at least once every year, since I suffered from my ABI. The first time we visited my neurologist I was in the worst condition you would think possible. I had lost a huge amount of weight, my cognitive abilities were at their slowest and my senses (sight, hearing, smell etc.) had been drastically affected by my injury. I do not remember much of what was discussed really at this meeting, all I can remember is my parents asking lots of questions; craving the information that could fix the problem, that could fix me. We were given the task of ensuring that I followed the instructions and exercises set by my occupational therapist, try and get some physical conditioning back and to gain some weight. We were then booked back in for an appointment in a year’s time, to check on my progress. “Let’s see where we are in a years time after we’ve reached these goals,” he said.

Pro-Active vs. Reactive

The conclusion of this meeting was fairly reasonable at that time given my condition. Six years later, I realise that the advice I am being given in my annual appointments is very similar to that first appointment: setting goals (admittedly the goals became more ambitious as years went by) and then seeing where we are in a years time: an approach of play it by ear. The advice tends to be reactive in nature (as in waiting for things to happen, see how they go and then reacting to it) and tends to produce results in the long term.

This can be very frustrating for patients when all we want are answers, something that will produce tangible results of improvement in a short space of time, tying in to what I said about the inherent human desire to solve problems. However, I am of the opinion that we can’t place the blame on doctors for approaching methods of recovery in a cautious way. Doctors dealing with brain injuries essentially have their hands tied by the nature of the injury they are dealing with; by the nature of the beast, if you will.


Illness is a difficult thing to deal with. Regardless of the type of illness it is always a disruption to life. Whether it is merely a case of having the flu and having to take a few days off work, or whether it is something life threatening like cancer, an illness where you take months off work to receive treatment. Illnesses such as those range from being inconvenient and a pain, to devastating the lives of families. From a medical perspective, I believe that a brain injury is a different entity. Now I must clarify when I say “different” I DO NOT MEAN WORSE, just different. They are different in the way you approach them, they are different in the way you treat them and they are different in terms of the aftermath.

The reason I say this, is because illnesses such as those I have mentioned, ones such as Cancer, they have a set of symptoms, a time line, and a way to treat those symptoms. That type of illness has a cure, the illness can be explained in terms of what is happening within the patient’s body in a very specific way and a doctor can explain to them a strategy as to what they are going to do and how the cure they are providing is going to fight the illness, once again, in a very specific way.

The Nature Of The Beast

The nature of a brain injury is quite different. Brain injury doctors do not deal in specifics. I have an appointment with my neurologist once, maybe twice a year. In those appointments, we discuss potential targets for the forthcoming year and any issues concerning me. There is very little that neurologists and other specialists in that area can give you in the way of specifics and more importantly help in gaining solutions to the problems that you want to solve. The reason behind that is a simple one in my opinion, it is due to the incredibly complex nature of the brain itself.

The key factor though and, in my opinion, the most influential reason behind this reactive approach: all brain injuries are different. It is impossible for a neurologist or consultant to predict what a patient is going to be like post-ABI: what they will struggle with, what they will find manageable, how they will react in social situations, how they are with problem solving and so on. While the body heals itself in a fairly short space of time; take me for example, the skull fractures I suffered from have long healed, as have the effects of the operations I underwent, and much of my sensory function has returned after a period of years. The issue with a brain injury is the healing process taking place in the parts that aren’t visible: the reproduction of brain cells, creating new thought pathways, and the brain generally healing itself is a long-term process that is impossible to predict. So most of the advice you will receive will be tailored to that end, playing the long game as it were.

Are There Other Ways Of Doing It?

There are certainly other ways of approaching the recovery and reparation of the brain but I will say the following: DO NOT IGNORE WHAT YOUR NEUROLOGIST SAYS. He or she after all, is the one with doctorate and after all I have said about reactive advice and approaches, while they are a long-term approach, producing results in the long-term (which can be incredibly frustrating for us patients and those around us), they are effective. What I would say is do not be afraid to experiment with certain things, certain activities or exercises such as going out for lunch or a cup of tea in a local cafe where a patients brain is “forced” (for lack of a better word) to engage and to work. However, these activities should only be done after you have carefully assessed the situation: the wellbeing, mental state and both cognitive and physical abilities of a patient. Also any task undertaken should be small and manageable with a good chance of success (going back to what I have said previously about small targets and building confidence) to help boost confidence and improve self-esteem. While I urge you to follow your doctor’s orders, I definitely benefitted in my recovery from thinking outside the box on occasions (well it was my parents who handled the box thinking duties really, whether inside or outside).

Where Can I Get Other Information?

A lack of information that enables you to get involved, be pro-active and get your hands dirty can be incredibly frustrating. A key part of easing those frustrations is searching for other fountains of knowledge that can help you. My next post on Monday will be talking about some of the organisations and charities and the tremendous work they do in providing opportunities, information and advice to patients, carers and families that can perhaps help you in the recovery process.

I hope that this has been of use to you and along with the next post can help you through what is a very frustrating as well as traumatic experience of trying to get the right information to make your recovery as successful as possible. Please keep reading my experiences and I hope they can be of help to you. Follow me on Twitter, my handle is @ABIblogger to get news of updates and other ABI related bits and pieces I post on there. Thank you for reading and look after yourselves.

Appropriate Levels of Stimuli

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. The last few posts have focused on the importance of rewiring the brain after an Acquired Brain Injury. In those updates I attempted to stress the importance of assessing the strengths and weaknesses a patient has while at the same time, finding a balance of starting this process as soon as possible, while ensuring that the patient doesn’t become overwhelmed by it.

While I spoke about general life skills, such as reading and making food and drink and such, I don’t think I mentioned much about what it is that can stimulate the human brain. I also don’t know if I placed enough importance upon the idea of carefully monitoring and managing the type of stimuli a patient is exposed to. How a patient reacts to different stimuli (reacts well, reacts badly, gets tired, becomes anxious, becomes frightened or angry; all of these are potential reactions to different stimuli for an ABI patient) will affect not just the patient, but also the lives of any carers that spend time with them. A reaction to an activity that would have otherwise been a treat for the patient pre-ABI could now be something that they find very difficult. When I say stimuli, I am talking sensory, cognitive and social stimuli. You will see what I mean as we get into it.

What is a Brain Stimulus?

This is a difficult question to answer, but to keep it simple, in one way or another; everything that we engage with is a stimulus. Watching a film is a stimulus, holding a conversation is a stimulus, playing a video game or reading a book, most recreational activities are stimuli. All of these things cause the brain to work in order to process the method and either interpret/attribute meaning to the outcome. On the other side, you have our biological inputs that react to stimuli, such as the senses (smell, taste, touch, sight, and hearing). In other words, it is difficult to do anything in a day that does not involve engaging with a stimulus of some kind, whether biologically or cognitively.

For a patient post-ABI, different stimuli can have different effects, both positive and negative and is something that leads back to the last couple of posts on “Rewiring The Brain” & “Rewiring The Brain (Part 2)”. Keeping a close eye on a patient in the early stages of rehabilitation will be important and contributes to managing difficulties involved in both types of stimuli (cognitive & biological). We often tend to forget that even things like bright colours (say a brightly decorated room) are stimuli, bright lights are stimuli (such as a particularly sunny day), and a crowded street is a stimulus (with all the noise, bumping into people and so on.).

How am I supposed to do anything about that?” I hear you ask. Well that, unfortunately, is one of the key problems you will need to figure out. The point is that the world is not a convenient place, these stimuli will be everywhere and you wont be able to do a thing about them in many of the cases. Chances are, if you are a carer, you may not have even thought about some of the stimuli present in the patients life because you do not think something that minor could have such an effect.

(N.B. An example of this; If a patient has a brightly colored room in terms of the paintwork, maybe switch with them, if only temporarily, until you can repaint it a more neutral colour).

Mundane things such as the weather or the way you have decorated your house may have an adverse affect on the way a patients brain functions and may cause problems for them. Over stimulation of the brain after an ABI may cause fatigue, erratic mood swings and depression to name just a few. The key is to find a way to overcome the problem that faces you. It is a case of thinking outside the box.

Real Life Experiences

I will give you an example, based off of my own experience of, for example, going shopping. Having to go out shopping required me to go into public places where there were a lot of people (this was not something I could do without becoming anxious, stressed and frustrated). I also found it hard to remember multiple things I had to buy, and not to mention that, in the summer; the bright sunshine (which, sorry to say, is a stimulus) was certainly against me. So one of the tricks we used was to get up as early as possible if I was going to go out and do my shopping; early morning means low light, it means less people (the people that were their tended to be older so there was less chance of the usual hustle and bustle of a crowded street (the busyness and invasion of space was what I had big issues with), and it meant that I could take my time. If I had to, if the crowds were growing and the weather was brightening up, I would simply go home and come back another day in the early morning.

Having found myself in this position, the key thing that I realized was that time was on my side. I would certainly say that it is inadvisable to treat things with the same rush and urgency that we treat everyday life. Although the concept of rushing and urgency are intangible, they both act as brain stimuli and will affect the patient as they put pressure on themselves to adhere to a tight schedule and the knowledge that their task must be completed by that deadline. If I was speaking to carers out there, one piece of advice I would give, remember to keep telling the patient that they have time, that there is no pressure; allow the patient to react to the stimuli neither of you can control in a way that they are comfortable with and that they can manage (if they need a rest, let them rest. If they need quiet, take them home). While that may be inconvenient, in my opinion, it is certainly what is best for the patient as they then find ways to deal with any problems that may come up in their own way. It was certainly an effective method for me.

Social Stimuli

The activities that an ABI patient likes to do, may well be changed or affected by the injury. An example of my own experience; in our family, meal times and food have always been a big thing. Sundays we sit around the dinner table and have a roast dinner and a glass of wine, etc. This has always been the case in our family. So just after my ABI, I had been discharged from hospital and, a few months later, was starting to make my first ventures outside. Down to the seaside nearby, to the local market and so on. As I said in the sections above, we tried to get out early and be done by lunchtime (around 12:00/13:00). As I was not able to do much, my father who was looking after me would try and do something to give me a treat while we were out shopping. One time, he took me to a nice restaurant, something prior to the injury I would have really enjoyed. However, that particular lunchtime was very busy, there was a lot of noise, and I also found for the first time that if I sit down anywhere that is not my home I have to have my back to the wall (a neuroses that still persists today). Matters where then made worse when the waiter came around with the menu, it wasn’t that I couldn’t decide what to order, more that I didn’t even recognize some of what was on the menu. All of these factors contributed to what was a very upsetting day out (for both of us).

I would advise carers out there to not be too upset if something you previously bonded over, pre-ABI, no longer seems to be such a passion to the patient. There is a chance that the enjoyment of those activities will come back in time. Once again it is a case of taking your time and finding different ways to do the things that both you and the patient will enjoy. Better still, maybe experiment with different things neither of you have done before. I remember my dad borrowing my aunt’s car (a Porsche convertible). We went out for the day on a drive, in the summer, top down and went to a quiet seaside café for lunch. That is one of those days I am always going to remember.

Changes In The Way Patients React To Sensory Stimuli

I am 26 years old. My generation and the ones that follow us, are a generations whose social and leisure activities revolve around multi-tasking, doing more than one thing at once, and consuming more than one source of stimulation. How many of us play a video game with our music on in the background? Or do our work even, with an iPod playing? Or when a family member puts something on television in the living room that we don’t like, how many of us pick up a book and stay rooted to the same chair? Reading our book with the noise of the TV merely a background noise. These all count as multi-tasking and these sensory stimuli that cause our brain to work are perhaps more challenging for it than a physical act of doing two things at once.

For me, this way of life came to an end when I suffered an Acquired Brain Injury. Now, I cannot engage with multiple stimuli. For me, it is merely a case of the brain being used to its maximum capacity when taking on a single task. For those out there reading this as patients, I’m sure many of you will feel the same type of feelings I did when tasked with two different stimuli invading the sensory part of my brain: fatigued, irritable, and even antisocial. For those who are also wondering what that feeling in your head is, that feeling as though your brain has been stretched and overworked by even the simplest of tasks, that is a feeling I completely identify with and it is a feeling of fatigue, the feeling that your brain is overworked and needs to rest.

I would strongly advise against the use of more than one stimulus for the patient in the early stages of the recovery. Particularly when it comes to digital technology such as video games. Epilepsy is a very real risk after an ABI and due to the type of technology and stimuli being used in modern gaming and even some modern films, I would advise any carer who is allowing their patient to use games consoles or even allowing them to watch movies, that they check the label on the back which will give you any extra information regarding the type of lighting, special effects or sound effects present within that particular piece of media, all of which have the potential to contribute to epilepsy.

Keeping It Balanced

Again, this has been difficult for me to write. It is hard to stress the importance of ensuring that the type of stimulus a patient is exposed to is safe, appropriate, and manageable while at the same time, allowing the patient to have some fun and not wrapping them up in cotton wool. In this recovery stage, I do not envy the carers who are looking after the patient as they are in a position where they constantly have to be aware of what the patient is doing, how they are doing it and where the line is: when is enough, enough? Now I realize for any carers out there, that you cannot control everything all the time, it is important that you yourself realize this as well. But you must be in a state of constant awareness regarding the patient, their environment, what they are doing to entertain themselves and how much they do on a particular day.

I hope you have found this helpful, and if you want to find out more about what I am up to follow me on Twitter (@ABIblogger) and follow me here on WordPress for updates directly to you. Thanks for reading and I hope you have gained from it.

Coming Home…

So I was coming to the end of my hospital stay and had been deemed fit to come home. That is the thing with acquired brain injuries, for most people who leave hospital; it means they are fit to go back to everyday life. However, I had been discharged and was still coming to terms with the after effects of my injury. While physically, I was fit to leave in the most basic of senses (e.g. I could walk, talk, make a cup of tea etc.), my rehabilitation in terms of my mental condition; the sadness, the anger bubbling below the surface, the depression and feeling of isolation, I was no where near ready to come home.

Discharged From Hospital Post ABI

When last we met, I had been discharged from the rehabilitation ward, gym membership in hand and perfectly able to use a pelican crossing. My tea and toast making ability had been thoroughly tested and established. In basic terms, my essential skills for living, or existing might be a better term, had been seen as adequate. I’m sorry if this post has started off in an angry tone, it’s just difficult some days when you’re truly unsure of your place in this world. On occasions, it can feel as though the whole world is against you. I have spent the last few days contemplating my situation and have found it hard not to get angry. I am in a position right now where my twenty-sixth birthday is exactly a week away and I am living with my mum and dad, unable to get and hold down a job due to the problems that the ABI has left me with, and unable to access any support from a government that seems determined to put vulnerable people over a barrel, but anyway, enough of me feeling sorry for myself.

One of the things I cannot emphasise enough to anyone reading this is how important the home environment is for a patient coming out of hospital after suffering an acquired brain injury. Having had a brain injury, in hindsight my experience tells me that, in the early stages I was extremely resistant to accepting the limitations that had been placed on me. Truth be told, I have only come to terms with those limitations recently (my rant in the opening paragraph would suggest that I still have trouble accepting them), and my injury was more than six years ago. The patient will be slowly coming to terms with monumental changes to who they are, the way that they function, and as I said before a series of limitations that have been imposed on them. In this time of transition (which will take a long time), it is vital that a patient is in an environment that they are comfortable in, familiar with, which is quiet, and in an ideal world, has company. All of those aspects are vital, but if I could stress one above the others, it would be familiarity.

Life post ABI is strange, as it will depend entirely on what mood a patient is in on that particular day. I remember that I would yearn for company, then later that same day, craves solitude. Quietness kind of comes with the company part, but in my opinion, stimuli for an ABI patient certainly shouldn’t exceed conversation with a couple of people. From my experiences, going to busy places with big crowds and lots of noise is not advisable: it will only cause distress to the patient. Comfort of course goes with the territory, when they are at home, if you as a carer can manage it, the patient should want for nothing. Familiarity was something that was not a variable. After I suffered the ABI, I liked things a certain way, I liked things to be kept in certain places, and I liked consistency. This is still something that persists today. I have to have things a certain way or it throws me through a loop. If I can give advice to any carers out there it would be to ensure you avoid chaos, especially in the home environment, even in the smallest ways. Be sure you are consistent and reliable in what you say and do.

Chaos At Home

Chaos at home just after my release from hospital was almost unavoidable. It was unfortunate that my injury happened at a time of great upheaval for my family. As I have said in previous posts, my parents were in the process of moving house when I was admitted to Southampton Hospital. They had to manage the process of balancing moving house with seeing me and caring for me at hospital. God knows how they managed it. Needless to say, the moving process suffered greatly. Some boxes were never unpacked throughout the entire tenancy. At the time of moving, boxes were thrown willy-nilly into the house and garage until my situation became clearer. My parents have said that the moving process was something of a haze and they just put things where there was space for them to go if you understand my meaning. The problem with this was that there was absolutely no order around the house, which I struggled with.

The only room that was in any semblance of order was my new bedroom. My collection of films was unpacked, a TV and DVD player setup, books on a bookshelf, clothes in the wardrobe and chest of draws and so on. I was released from hospital in early November, just as winter was setting in. The heating was on full in my room, the only room in the house where this luxury could be afforded. My bedroom became something of a sanctuary for me. My films kept me company in what was a very lonely time for me. Again, as I stated earlier, my mother had to go to work everyday to keep the money coming in and my father was forced to get a new job having been rejected for carer’s allowance. This meant I spent the bulk of the day on my own in a new place (not that I could leave the house anyway).

Such was the extent of the relocation though, that transport for the friends from the town where I had previously been living was infrequent and expensive. Even when it got to a point where I could leave the house I was still isolated, as I didn’t know any of the people in the street, as was the case in my old community. I felt extremely alone. The evenings were pleasant enough when my parents came home but the days were extremely difficult. This feeling of isolation was a big contributor to the feelings of loneliness and depression I suffered from as the recovery progressed. That is a story for another day though.

On the next post I will be discussing the period of settling in at home and some of the approaches, in terms of the philosophy we took, on the road to recovery.

Thanks again for reading my journey. The feedback I have received in terms of comments on WordPress and on Twitter has been fantastic. Please, I invite you to post some comments with any feedback and constructive criticism as to how I can improve the blog. I would love it if, between us, we can really raise awareness on the subject of brain injuries and create a constructive community/dialogue. My Twitter handle is @ABIblogger. Please follow me and get in touch if you have any comments, questions or constructive criticisms. If you are following me on twitter, be sure to tweet/retweet and share the link to the blog so we can get the word out on brain injury awareness. Thanks again and things can get better!

It’s All Coming Back To Me…

My name is Tom and I am the survivor of an ABI. When we last left off, I was still recovering from PTA (Post-traumatic Amnesia). It was difficult to provide much material on this subject (for obvious reasons) but I did my best and I hope, with some help from my parents, I have managed to provide some useful information on this subject and what it can be like. I also hope that those who read my last post will not underestimate the importance of having reliable and trustworthy advocates to act on the patient’s behalf while they are still in a comatose state or a state of PTA.

Snatches of Memory

There isn’t much that I can really remember properly until I had my second surgery. There is only one memory I have that I can truly remember, so let me share it with you.

I remember waking up and feeling extremely warm and comfortable. The room around me was totally unfamiliar. It had the same sterile, plain feel of a hospital room, but it felt like mine. There were pictures of my cats pinned to the wall with their names written underneath. The day of the week and time of day was written in large felt tip pen on some A3 pieces of paper. Pictures of me and my friends, my brother and sister (all labeled of course) were also adorning the walls.

I looked around me, bracing myself for the news that I had suffered another seizure (epilepsy being pre-existing condition for me, my diagnosis coming at the age of six). My mental state had all the marks of being post-seizure. I was exhausted, I had a headache, and my thought process seemed slower. But again, something was different. My entire family seemed to be here for this, including my aunt and cousins who lived in Stoke-on-Trent, a 400 mile round trip for them. Surely, a run of the mill seizure was not important enough for them to be concerned with?

Even after the PTA had gone, I was totally baffled by the fact that somebody would do that. Why would someone do that to me (ego or what?)??? It was extremely difficult to process that I could bring out that kind of anger or hatred in someone. I seemed to be really hurt, from an emotional point of view, that a person could do this to me and in some way, I seemed to be trying to take the responsibility for it, as though I had deserved what had happened to me.

For a while though, my brain seemed to reject even the idea of an attack. It would differ from one day to another, one day when asked why I was in hospital I would answer correctly: that somebody had attacked me. On others though, I would say that I had had a fit.

The Second Op

Oddly enough, it was only when I had the second operation, the one to replace the skull flap that had been removed in the first op, that my memory really saw resurgence. I am not sure if these two things are linked but that is just how I remember it. I had returned to Southampton for the second surgery. I remember vivid things about staying in Southampton the second time. I remember that there was a man on my ward who would not shut up! He just kept pressing the call button and shouting for the nurse. I remember my brother sneaking me in a burger king meal not long after my surgery to cheer up me up after the hospital food. I remember how bad the hospital food was!

My second stay in Southampton Hospital was fairly uneventful. I did some basic exercise in terms of getting up and walking about. I remember having to wear those legging type things to help with circulation because you spent so much time lying down. I also remember chatting (though I cant recall the conversation) to an incredible man who had been injured on military service in Iraq I think it was. Things didn’t really start to get interesting again until I was discharged from Southampton and sent to a more local hospital for a “rehabilitation” program.

Now before I start this paragraph, I just want to say that I think the NHS in the UK is absolutely incredible. The people, who work for it, in any capacity, are incredible. However, where I live, in Dorset, a low crime, very middle class area, the head injury services are fairly underfunded as they are not very commonly used. As a result of that, the quality suffers. I went to a Dorset hospital for three weeks after being in Southampton. I did some very basic physiotherapy, I went to meetings with other patients who had suffered head injuries where we did things like make toast and cups of tea, and I did some tests on basic cognitive skills. Before I was discharged, they remembered they had not done a road safety test with me yet. This went as far as to take me outside to a pelican crossing to see if I could use it. As I could, this was deemed sufficient.

When I left the hospital, any continuing support was extremely inflexible or not very effective. Having been bed ridden for nine weeks, my physical condition was handled by a weekly physiotherapy appointment, and a free gym membership. I saw an occupational therapist once a week (who, to be fair on the second one, I formed a good relationship with. But the first one came round with odd one out picture puzzles for me to do and just drank all our tea!). My father was rejected when he applied for caregiver’s allowance, as I was not deemed to be in a severe enough condition.

So to any caregivers, parents, or anyone else out there, allow me to give you some advice: be prepared for a battle. Nobody, especially now, in the current political climate, is going to give you anything. The system is against you at this point in time. It will be an uphill struggle from now on. I’m sorry; I know that is not what you wanted to hear. When I was going through this, it was before the welfare state had been cut to the bone but you need to know the score. It’s going to be a fight for everything you can get from here on out.

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Brain Injury In The Family – The Importance Of An Advocate

My name is Tom and I am the survivor of an ABI. During this post I will try to cover as much information as I can. If I were to include every scrap of information it would be a post written by my parents as during the first three to four weeks I was suffering from Post-traumatic Amnesia (PTA) having just come out of my medically induced come after my Intra-cranial Pressure had levelled out.

I can remember very little of my stay in hospital, until I had the part of my skull replaced in the second surgery (I’m not sure if this is coincidence or whether there is a medical reason as to why this is the case). But through my parents, the scrapbook made by my family and friends, medical notes and other research, I have done my best to piece together a narrative of what happened in the month that followed the coma.

Family & Advocacy

On that note actually, comes my first piece of advice for the carers or family members out there. I cannot impress on you enough, the importance of somebody being there for a patient to act on his or her behalf. I was in a position where I needed 24/7 care round the clock. Now, with the best will in the world that is not really possible at any hospital outside of Intensive Care. All patients deserve the same standard of care and to achieve that, it is necessary to spend an equal and appropriate amount of time with each patient. This was all the more difficult for doctors and nurses due to the difficulties I was having after waking up from the coma: the effects PTA was having on me, and just the general nature of head injuries: I was confused, distressed, and occasionally angry. Even with a large staff it would’ve been nearly impossible. Then again, there was one hospital that I was in that had suffered from big staffing and budget cuts due to poor financial management, this is not the staff’s fault, it just meant that there were not enough staff in that hospital which increased the likelihood for a mistake or a lack of care.

For example, because of the after effects I was suffering from, I could not remember whether I had been fed (never mind what I had), whether I had been washed, and making choices was extremely difficult for me. So choosing a meal was incredibly difficult. So someone being there to help me with those things was very important. My mum always made sure that I had something different to eat each day and that I ate as much as I could.

It is also important when someone has had a brain injury to give them an insight into what you, as a carer, were going through and how much everyone cares. My advice to you would be, when someone you know is in a coma or has suffered a brain injury, start a scrapbook as close to the beginning of it as you possibly can. The scrapbook that was created for me included messages from family and friends, newspaper clippings (as I was on the front page of the local newspaper), and most importantly day-by-day written updates of my progress and what was happening around me by family members. This was important for me as it allowed me to then have some window into what that period was like for my loved ones. It was a period of time that is seared into the memory of my family: hearing constant bad news, seeing a loved one in danger, emotions constantly at the surface. While I was physically there, I was not mentally, if you see what I mean. I was not aware of anything going on around me. It is a period of time that will never be forgotten for them that was centred on me that I have no recollection of. It was amazing to find out information like how bad I was, the medical procedures I went through, how much of a big deal it all was in my hometown, and most importantly how many people loved me and had come to visit me.

From One Hospital To Another

I spent different amounts of time in different hospitals for different reasons. All of them tried their best, however there were experiences our family had that were pretty terrible. For example in one of the hospitals we stayed at, when I needed that round the clock care, it just wasn’t feasible. There was an instance where I was not provided with the right bed with rails on both sides. Due to this I fell out of bed. This perhaps, is less of an issue when the patient does not have a brain injury, let alone half of his skull removed, but then at the same hospital I also contracted a case of bacterial meningitis due to my bandages not being changed regularly enough. My father, who had been staying with me to help with the constant care, spotted the meningitis. It took him reporting the problem for doctors and nurses to sit up and take notice. So this just goes to show how important the role you play as carer can be, not just in terms of speaking for the patient but also in terms of monitoring things that may not be quite right in terms of patient care.

If, as I was, you are put on a ward where there is no specialist head injury nursing available, then staff are doing their best in a difficult situation. They are doing the best they can without any specialist knowledge and probably have another thirty patients to deal with as well as you. Your carer has only got you to think about and can listen really carefully to the advice your head injury consultant is giving, and then can implement those things (for example, for me, an instruction was not to have more than fifteen minutes of stimulus and when I had those fifteen minutes they had to be followed by at least an hours rest so that my brain could recover, another was wearing a helmet when I could get out of bed). These are most often things that, as I said previously, the regular nursing staff will not even have time to think about and it took my parents’ presence to ensure that those rules were strictly enforced.

I have to say, once more, that the NHS is incredible and I would not be here without them. However, there was certainly a lack of continuity in the care due to the switching of shifts and the use of agency staff, it was one person after another without the required knowledge of my situation or of brain injuries as a whole.

My name is Tom…

My name is Tom and I am the survivor of an ABI. The Acquired Brain Injury I suffered in 2009 has drastically affected the last six years of my life and will undoubtedly continue to do so until the day I die.

The scars from the life saving surgery I underwent are clearly visible today, however, the emotional trauma and the permanent effects that the injury has had on me, somewhat less so. Brain injuries and the, in most cases, permanent, devastating after effects are massively misunderstood by most people. I say this to whoever is taking the time to read this blog: it will be very difficult to find anyone that truly understands those effects and what you or your loved ones are going through.

That is one of the key motivations for me in writing this blog: to help people. What you are reading would have come sooner had it not taken me so long to realize exactly what it is I can provide for people in a situation my family found themselves in exactly 6 years ago to the day. The idea of a blog had been in my minds eye for some time, however I always wanted to try and make it into something so much more epic than it needed to be. I wanted it to be scientific, with expert analysis of neuropsychology and neurology all held together by a gripping narrative. Then, after a discussion with my mother, I had a moment of clarity and I realized what I could provide. What I can provide is first hand experience of adjusting to life after a brain injury, something that no doctor can do (no doctor that I know anyway). One thing my parents said to me was that, at the time of my injury, they wished there was some kind of discourse or material that came from a subjective point of view to help them with adjusting to life after a brain injury, something that could benefit both the family of the patient and the patient themself. That is what I hope to achieve in this blog, I am aiming to give people hope that after something as life changing as a brain injury, life can go on.

It will be difficult for me to address the needs of every reader within the contents of this one blog, as every brain injury will have had different lasting effects. While I will have suffered similar problems to some of you, others will have had totally different experiences. What I am hoping for is that any readers out there will analyze not necessarily the issue that was being addressed but the method we used to address it. As I said before, the problem you are facing may be different but methods that my family and me used to aid my recovery may provide you with some inspiration to think outside the box and give the patient every possible chance of overcoming the challenge they are faced with.

This first entry is merely to introduce myself and by writing this blog what I am hoping to achieve. I will be going into much greater detail on different issues to do with life after a brain injury as time goes on. I intend to put up a new post every Monday and every Thursday for those who want to continue reading my views and about my experiences, which are aimed at benefitting as many people as possible. Also, within the posts I will be hoping to include some pictures and links to other sites that I hope will be helpful. I hope that you stick with me and that you’ll find this blog useful, beneficial and relatable. You can also follow my Twitter feed which is found on my profile, but if you’re on Twitter now, I can be found under the name @ABIblogger.

Until next time. Good luck & keep going