Carers Rights Week…

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. Much of this blog goes about celebrating the accomplishments, the perseverance and generally the attitude of people who have survived brain injuries. As I have covered in previous posts, a brain injury changes so many lives. What I have not touched upon thus far is the impact it has on the people that take it upon themselves to care for us patients throughout the recovery process.

This week, as carers rights week, seems like the appropriate time to give credit where credit is due. I feel it would be appropriate to talk candidly in this entry and highlight the things that our carers do for us, the sacrifices they make, and how much credit they deserve. I often think that this is glossed over within the mainstream discourse regarding head injuries. Of course, the discussion that is being had within groups (i.e. charities, organisations, care groups and medical services) are well aware of what is required in the day-to-day care of patients, regardless of injury type, because they see it everyday.

The purpose of this post is to hopefully make more people, those who are not directly involved with patients on a regular basis, more aware of the kind of things that are required of carers every single day.

What Do They Do?

Well, as the name suggests, they care for the patient. That is putting it in a very simplistic form, but in essence that is the job description. What the job entails however is much, much, more than that. Reliance and trust are key components to the carer/patient relationship. At best the carer can be relied upon to do simple household tasks or other fundamentals such as grocery shopping, at worst they can be required to help the patient use the bathroom, clean and feed themselves, it purely depends on the severity of the condition.

My carers (i.e. my mother and father) help me with many of the things, which have to be done in day-to-day life. The reason I live at home with my parents is because of the necessity for care. Living at home, while certainly not ideal for a 26 your old man, takes much of the pressure off of me, pressure I find difficult to handle when living alone. The things that tend to stress me out are often what would be considered as fairly standard tasks, or tasks that you need to get used to as you progress into adulthood: the complex issue of setting up and paying bills, my newfound impulsive nature meant I was not very good at handling my finances, I had (and still do have to a certain degree) issues with socializing and engaging with people. As well as these, I generally needed to be reminded about basic everyday issues such as taking my medication at the right times, eating healthy meals at the correct times, washing and showering and basic hygiene as well as cleaning up after myself. My parents have helped me, and still help me, with all of these issues since I suffered my brain injury. It just goes to show the extent and effect brain injuries have, when six years later I still have a high degree of dependency on my parents. After everything they’ve done, the love, patience and support, I cannot thank them enough.

What Do They Need?

This is an intriguing question to me. It is one I have pondered over many times. Is there any way I could make their life easier? Is there something I could get for them that would ease some of the pressure? Do they need help? It has only really dawned on me recently that what they really need, what they want and what they are struggling for, is to see us, the patient, progress and get better.

I have said many times in previous posts that with the right attitude, mentality, work ethic and support, things can get better. I do believe that, as patients, we do have a certain obligation to our carers in some ways, to try every single way to improve our situation. Not just for our own well-being and health, but also because an improvement in your health is exactly what everyone involved in the recovery process is working towards. I do not mean to miscommunicate my point. The point is with carers that they tend to do it not for any tangible reward, but for our benefit. It is, in essence, a selfless act. What I mean is, there is always that danger that we (the patient) can slip into a state of self-pity or depression where you do not want to do anything. Trust me when I say, when you’re in that state of mental health, progress is nearly impossible. I believe that the people who are caring for you, who are really trying to help you towards improvement, deserve better than that.

On that note, I suppose it is just as relevant to mention gratitude. I realise this may seem a very obvious thing, however it does go along way, as does simple politeness. Simple pleases and thank you’s will go a long way to improving the patient/carer relationship. Knowing that you appreciate them will give a carer a sense of importance and gratification, which will go a long way to boosting their confidence and self-esteem.

Taking A Break

When we consider this, what it is they need and all that our carers do for us, I think we also need to consider the consistent pressure they are under. They are there for us every day, whenever we need them. They give up a lot and make sacrifice, after sacrifice to ensure that the patients are in the best position possible to continue down the road of recovery. Thinking of having to make such a large commitment to something or someone boggles my mind. I would also add to that that it cannot possibly be healthy to continue that kind of lifestyle relentlessly with no respite.

I think it is essential therefore; that carers have the opportunity to take a break from their responsibilities. A couple of days away with a partner, just had a little time to themselves can be so valuable and so important to the patient/carer relationship. Having space away from each other prevents tensions from rising and can decrease the feeling that you’re smothering one another. I can speak from experience and say the both of those feelings are familiar to my parents and me and having time apart from one another will make spending time together and living together all the more bearable.

I realise that many of you will be asking how it is possible the carers to spend time away from the patient when it is very rare that there will be people whom you trust with both the time, the personality, and the knowledge to take on the task. My advice would be to go to the many charities and organisations that revolve around brain injuries. They will be able to give you advice and contacts to ensure that a patient will be well looked after if you should need some time away. Speak to those charities about this very subject and I’m sure that they will tell you the same thing: personal space and recreation is incredibly important.

I will sum up this blog post by sending out both gratitude and respect to those who take on the task of caring for anyone with any illness. Where we can’t, you do! You make our lives easier and more livable for which we cannot thank you enough. I would ask you that, during carers rights of week, you do take some time to yourself and try to have a day that is just for you. God knows you deserve it.

Thanks for reading this weeks post. I hope it has been helpful and informative. Please, follow me here on WordPress and if you are after any additional information on the blog, follow me on Twitter (@ABIblogger). Thanks again and be well.

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Post-ABI – Returning To Work (Part 1)

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. In my previous post I mentioned the potential positive effects returning to the “mainstream” could have for people who have suffered a brain injury. This post will look at how to approach returning to mainstream employment. Last time I spoke at length on the positive effects higher education had to me and what I hope was some helpful advice on choosing the right course and accessing the support you, as a disabled student, would be entitled to. This time I hope to do the same regarding a return to work.

How Will It Help?

Returning to work can seem like a daunting prospect when you have suffered an ABI like we have. You are coming to terms with a new sense of self; there are things that you cannot do any more (perhaps cognitively, physically or both), there are issues with regards to your physical and mental health (such as fatigue, anxiety and depression). Those are issues that we face everyday (to name just a few), but I believe that a return to work can help improve most of those issues. Working a steady job, supporting ourselves and increasing our independence, grows our confidence and sense of fulfillment. This in turn plays a massive part in contributing to a positive mentality where we do not feel defined by our injury or inferior to other employees.

Looking At Yourself & Being Honest

Nobody knows you better than you. That’s a fact. It is a fact I believe to be especially important post-ABI. After a certain amount of time, you will start to become more aware of what it is you may or may not be able to do anymore. You will start to see where it is you are having difficulties. Equally, it will allow you to see where you are still strong. You may not be able to see it yet if you are still coming off the back of the injury, but you do still have strengths and abilities that make you valuable. Taking notes of these strengths and weaknesses will be crucial in terms of when you are finally ready to return to work, in applying for a suitable job for you in the long-term.

Having a positive mindset and at the same time, having a firm acceptance of your disabilities and sense of who you are key when thinking of returning to work are massive contributory factors in terms of potential success. When it gets to a point of looking for jobs, it is much better to look at the job listings asking yourself “What can I do?” as opposed to looking for what you can’t do.

Again, Start Small

I realize that this has been something of a recurring theme in many of my posts but I am a firm believer in it. When returning to work it is certainly best not to jump in with both feet. Starting out small is key to this. I believe a good way to gauge your ability to work is through voluntary employment. Offer your services to a local charity shop, or work with the head injury charities available in your area (Headway UK offer local support groups for returning to employment and there are other disability employment organisations that can help you find appropriate voluntary work, follow the link to access their website –www.headway.org.uk) . The benefits of voluntary work are that it offers a flexible working schedule and environment. This flexibility will allow you to assess yourself while you are being challenged. Again, you can look at where you are perhaps stronger or weaker; try to think of strategies that help you cope with certain situation where you struggle and how to increase your involvement in situations where you are strong. If all is going well and you would like to test your strength a little more, you can ask for more hours or more shifts while at the same time, if you are finding that the work is too demanding, you will be able to reduce hours and shifts accordingly. The positives of this is that it allows you to assess your strengths and weaknesses in the working environment in a situation of less pressure and also, if you do well, get a nice reference off the back of it.

The Support Is Out There

There are many different types of support available for people who suffered a brain injury from many different sectors. There are specific rehabilitation services, such as some of the vocational rehabilitation services that offer courses to teach new skills to those adjusting to life post-ABI. Acquiring a new skill could be just the tonic you are looking for if you are, as I was and many others are, at something of a loss as to which route you should go down. There are many vocational services offered by local branches of the NHS and accessing them should be relatively simple through your specialist.

Other potential benefits that can be gained by accessing the services of the NHS are things like appointments with occupational therapists. Getting involved in those kind of services can really help you to focus in on what it is you want to do as well as bringing potential programmes that could benefit you to your attention. I believe that just because we are the victims of a brain injury we should not be stuck in a job we hate for the rest of our lives. We should be able to gain employment that we are enthusiastic about and that gives us fulfillment (P.S. In terms of accessing the kind of support I have mentioned above – occupational therapy and vocational rehabilitation – a good place to look is in the service directory under the resources tab, on the UK Acquired Brain Injury Forum, just follow the link to their website – http://ukabif.org.uk).

There are also the Disability Employment Advisors (DEA’s) at the local Jobcentre Plus who can help you to shift through the many job opportunities out there to find something suitable for you and your specific situation. The Jobcentre Plus also offers specific programmes for disabled people who are trying to go back to work as well as information on potential welfare eligibility. Many of the Jobcentre’s effectiveness and their ability to help you will be dependent on the amount of funding they receive. I would urge you to go into it with an open mind and explore all the options that they have available (PS. Follow the link to a useful Jobcentre Plus guide – http://www.jobcentreguide.org).

In Conclusion…

It is only now I have completed this post that I have realized there is so much more I can say on this subject. So I have decided to elaborate on this subject on Monday as I think there is a lot to be said regarding the ABI in the working environment, so this one has ended up being something of a two-parter. Thanks everyone for reading and I hope it was of benefit. To find out more about my blog follow me here on WordPress @ABIBlogger or follow me on Twitter @ABIblogger (yes the lower case ‘b’ is intentional). Thanks again and be well.

Charities & Organisations (Part 2)

My name is Tom Massey; I am 26 years old and I am a survivor of an Acquired Brain Injury. Last time out, I focused on the charities and organisations that can help victims and their families in a search for information and knowledge that can help you take a more a proactive approach to ABI recovery. In the last post, I focused on the work of Headway UK (https://www.headway.org.uk/home.aspx) and the Child Brain Injury Trust (http://childbraininjurytrust.org.uk) and the services they can provide for families. This time round I will be looking at a couple of others that may be of help to you.

The UK Acquired Brain Injury Forum (UKABIF)

UKABIF is a charity that sees it as its prime duty to raise awareness about brain injury, ensure a continued healthy dialogue between different organisations involved with brain injuries, as well as ensuring that the families affected by ABI’s have easy access to available information and local services. This charity offer a fantastic range of services and different information on their website for ABI affected families as well as holding educational events, conferences and workshops available for all areas of Joe Public. Finally, UKABIF offer a lot of practical advice and information on follow up services that may not necessarily fall under the category of “medical” but are nonetheless, hugely important. In short they are a fantastic source of invaluable information.

What Can UKABIF Offer You?

As the title “Brain Injury Forum” suggests UKABIF is a fantastic resource for obtaining appropriate information post-ABI. As well as providing information, through various events organized by UKABIF, the charity also offers an opportunity to network with other people involved in the area of brain injury, either affected by them in every day life or directly involved with them in a professional capacity. These events can be found on the website on a simple and easy to understand annual calendar, giving the dates, times and types of events being held each month.

Online Resources

The UKABIF state that their primary goal is to ensure “That people with acquired brain injury have early access to good quality local, specialist rehabilitation and follow up services in the community if they are needed.” From my own experiences very soon after my ABI, the process of getting what you need, when you need, in a place you can get to can be like banging your head against a wall. It can be so difficult to get what you need for your loved ones (which goes back to that issue regarding loved ones and our instinctive desire to protect them and help them solve their problems). The UKABIF make this much, much easier. The problem that we found is that it is difficult to find the information, as it is never all in one place. There are different things offered by different services and it’s difficult to know where to begin. For example, where do you find a rehabilitation care provider? Or someone to help with long-term care? Well UKABIF make this process easier with their online directory of rehabilitation services, providing contact numbers, addresses, names and locations to make this process far more accessible to you.

Help In Other Areas

The directory also provides a list of regional groups that assist with rehabilitation and care in the area of brain injury as well as suitable and trustworthy law firms for any legal issues. Again providing all the required contact information, sorted by region, to make the process as easy and streamlined as possible.

It is not just those three areas that are covered by the UKABIF. The Head & Brain Injury Signpost is an online resource that can direct you to appropriate organisations that can help you with other key areas of managing life after brain injury such as education, advocacy, financial support and welfare to name just a few. Each category provides has useful downloadable documents and links to other sites that can be of use.

The wonderful thing about the UKABIF is that it is not a static source of information. As the charity continues to expand its network, the website will be updated making that information available to you so you can take that advice and run with it. Below is the link to their website (which is very easy and free to join for those with a head injury or for carers) and their registered charity number.

Link: http://ukabif.org.uk

Charity Number: 1128284

Epilepsy Action UK

This is a slightly shorter post, as I’m not sure it applies to everyone but I know for sure that it applies to a lot of people post-ABI. Epilepsy affects roughly 50,000,000 people worldwide and yet still seems to carry a huge stigma with it. Epilepsy is often an after effect of a severe brain injury and I thought that I should put the details on here (it is particularly relevant for me as a victim of tonic-clonic seizures since the age of about seven).

Epilepsy Action UK is the country’s leading Epilepsy awareness charity. They are a member led association, meaning that many of the people working there suffer from the condition themselves. They see it as their task to improve the societal association and stigma that surrounds it and raise awareness on epilepsy, also to improve the live of those suffering with the condition.

The website offers basic information on essential things such as first-aid, what to do when someone is having a seizure, different courses that you can take, education and employment, the law regarding epilepsy equality, as well as health and safety advice. Most importantly, it provides information and helplines as to how people, young and old alike, can learn to live with their condition and enjoy a life just like everyone else.

The Online Services

The website offers online learning experiences and courses to teach people about the fundamentals of epilepsy, issues such as seizure triggers, memory problems, as well as stress and epilepsy medications are addressed. There is also the fantastic new resource, an interactive learning experience for children to teach them all about epilepsy to help them gain a better understanding of it. Thus, ensuring that they do not grow up to develop that negative association that has come to be part and parcel of epilepsy. Epilepsy Action UK also offers a new resource to train teachers and school support staff on supporting children with epilepsy.

Epilepsy Action UK is a registered charity and the charity number and link to their homepage can be found below.

Link: https://www.epilepsy.org.uk

Charity No: 234343

What Do We Gain From These Charities?

In the last two posts I have been looking at charities that I believe will, most likely, benefit those with a brain injury the most. The wonderful work these organisations do help millions of people around the UK. What make them particularly amazing are not just the contributions of everyday people, whether they are on a paid basis or voluntary basis. Nor is it the progress they make in obtaining new information. Both of these things are fantastic but I believe that it is the constant way they are adapting to meet the needs of people like us, the service users who would be struggling without this kind of help. So to every charity out there, related to head injury or not, I commend you and I am so grateful that you are there for us.

Thanks very much for reading. I hope that this will be useful to you and that you can gain something from the charities I have mentioned and through the fantastic work they do. I am always open to feedback and comments. I would love for you to follow me on Twitter (@ABIblogger) or get in touch via WordPress. Thank you and be well.

Charities & Organisations (Part 1)

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. Last time out I spoke about the type of advice ABI patients receive throughout the recovery process and the reactive nature of that advice. While the ABI recovery is certainly a long-term thing and the advice of specialist doctors and consultants is not to be ignored, I am of the opinion that there is also a pro-active element to recovery that can be of benefit to patients. There are definitely positives to be taken from the pro-active approach, the problem is, it seems to me, people often find themselves asking when it comes to finding out about the pro-active approach and obtaining the right knowledge, where do I start?

Charities and Organisations

It is here where the incredible work of charities and organisations come into play. There are many of them around that can provide information and advice, for patient and carer alike, to improve quality of life, answer questions, and just as importantly, provide simple, understandable explanations for people Due to the over complicated (and sometimes insensitive) way brain injuries can be explained to families, charities play a crucial role in talking us through a terrible situation in a kind and gentle manner that is easy to understand. Below are just a few of the organisations that may be able to help you in your search for knowledge, information and advice, with a brief summary of the type of things they may be able to help you with.

Headway UK (The Brain Injury Association)

Headway UK, through a network of more than one hundred groups and branches, works to aid families, patients and carers in understanding and coming to terms with the long-term effects of a head injury and what those effects will mean for everyone concerned. The charity is split into different organisations around the country, with a Headway branch dedicated solely to that specific region and tailoring services to fit the needs of that region.

What Can Headway UK Do For You?

Recovery programs are tailored to meet the precise needs of individuals who have suffered brain injuries as well as helping those that support the patient. Headway provides help in implementing those tailored recovery programs in the home environment and enable the patient to take steps forward, towards recovery. They provide many of the typical services required to aid the recovery process but go far beyond the call of duty.

As well as helping patients with things such as mobility, food preparation, assistance with medication, and patients budgeting their money (in other words the things we all have to deal with in every day life), they offer services such as befriending schemes to include 1:1 support for a patient, assistance in accessing community and social activities that may be appropriate. Not only that but Headway can assist in back to work schemes and in patients returning to education. Finally, these last two, which are so important, they have the services available to provide live in twenty-four hour care for those in such a situation that need it, as well as providing respite services for live-in carers who may need a break. These last two are so important in providing care as it is important for those looking after the patient (whether a trained carer or a family member) to have time to look after themself and live a life of their own to prevent the relationship between patient and carer becoming strained.

These are just a few of the services provided by the Headway UK charity. To find out more about services offered in your region, visit their website, a link can be found below along with its registered charity number.

Headway UK is a registered charity: (no 1025852 / SC039992) follow the link below for more information on their services.  https://www.headway.org.uk/home.aspxn

The Child Brain Injury Trust (CBIT)

The Child Brain Injury Trust works specifically with (surprisingly enough) Brain Injuries suffered and acquired during childhood. It is aimed more specifically at parents and those caring for the patient as they try to deal with the difficulties an ABI presents at that stage in a child’s life. Another key part of the work they do is trying to help parents plan for what is an uncertain future post-ABI.

What Do Child Brain Injury Trust Offer?

Through the actions of a team of efficiently coordinated regional child and family support workers, CBIT can help you provide a tailored rehabilitation and support program to meet the needs of the affected child. Of course, childhood is a time of constant change and development. As your child grows up, dealing with the after effects of an ABI, CBIT affords the programs flexibility and changes them as the child progresses from being a toddler, to pre-teens, into adolescence and beyond, fitting them around the lives of the children in question. As well as this, CBIT can put you in touch with the appropriate consultants, educational specialists, teachers, social workers, and psychologists (to name just a few professions) to give your child the best start in life and returning the playing field to something of a level surface, after suffering a life-changing trauma like an acquired brain injury. CBIT also maintain a focus on ensuring social opportunities for the affected children to ensure that they can integrate and engage with other children their own age.

A Learning Environment

As well as services such as the above, CBIT also provide learning experiences for parents and carers. There is an annual conference held usually in March, attended by parents of affected children as well as childhood ABI experts. There is an abundance of online resources and Webinars (web seminars) about living and dealing with children who have suffered an ABI for both parents and working professionals. For a more in depth look at childhood ABI’s you can attend one of their master seminars looking at very specific areas of the subject. Finally, again I believe that this is one of the most important learning experiences offered, the “Don’t Judge A Book By It’s Cover” workshop. This is a no-nonsense, jargon free approach to childhood ABI’s. This covers topics for people with little to no understanding or experience of working and interacting with children suffering from a brain injury. This workshop covers topics such as ‘what is an Acquired Brain Injury?’ ‘Supporting a child with a brain injury’, ‘Learning strategies’ and plenty more besides.

To find out more about The Child Brain Injury Trust (CBIT) the follow this link http://childbraininjurytrust.org.uk and they are a registered charity: No. 1113326

On Thursday I will be continuing with a few more charities that can often be of benefit to ABI patients. I hope that has been useful for you and you will get at least some of the answers you’re looking for from the two charities I have mentioned above. As always I always welcome feedback and have shortened the posts in response to a few readers suggestions and I hope that this length has been more manageable. Follow me on Twitter @ABIblogger, as I say, I am always open to constructive criticism. Thanks and be well!