There’s a statistic from a 2013-14 study commissioned by Headway that states that every 90 seconds someone is admitted to hospital in the U.K. with a brain injury. Let that sink in. Every. 90. seconds.
That’s a lot of brain injury. Considering the complex nature of brain injury that’s also a lot of uncertainty, confusion and heartbreak. Let us also not forget the practicalities such as loss of employment, social lives and the ability to ‘contribute’. With no real formal prognosis, aside from the age old (and untrue) two year recovery timeline, there’s a lot to consider.
I’m going to be writing this from my personal perspective as a citizen of the UK but I will say that I have heard many similar stories from many brain injury survivors world over.
Firstly, right off the bat let’s get that very British habit of shaming dealt with. There’s this tendency to tell ourselves that at least we’re getting some help and should be grateful, irrespective of the quality of that help. There’s also the old chestnut ‘there are people starving/being bombed/homeless/non specific event that makes them worse off than you’ (delete as appropriate). Yes this sentence can get dragged out at most opportunities, so whilst acknowledging there is terrible stuff happening it doesn’t mean that we don’t get to discuss where we have been failed and the fact that these failures have far reaching implications on a societal level (think numbers of people affected) is pretty important.
The most common complaint I’ve heard from brain injury circles is the discharge from hospital procedure (or lack of it). I was sent out into the world after 9 days, 5 of those in a coma, with absolutely zero information. I had no idea that I’d even had a brain injury, I still to this day am unaware of which regions of my brain were affected. I wasn’t told I shouldn’t drive. I wasn’t told that there was any help help available should I need it and wasn’t given even the most rudimentary information about potential symptoms or even just a ‘make sure you get lots of rest’ on my way out the door. This, unfortunately is not just my experience. Why oh why would someone with damage to their brain, the most vital sensitive organ, be sent home with nothing? A universal leaflet with some contact numbers and a list of possible symptoms is all it takes. I’ll make one if you want.
If I had presented obvious physical or cognitive deficits I’d have been packed off to the big modern rehab unit and in all honesty would probably be fairing a bit better right now as a result. I truly believe my recovery was held back by lack of information and aftercare. I came out of hospital thinking everything was functioning so every subsequent symptom that manifested sent me into a tailspin because I couldn’t figure out what was wrong with me.
My recovery began in earnest when I empowered myself by reading what I could to help me understand my new brain and my new life. I was referred at the 9 month mark to a Community Brain Injury Team (CBIT). This is where I got an OT, a physio and a neuropsychologist. This is a NHS service and they provided me with some stability during a very difficult period of my life. They did some great work with me but if I’m being fussy there is some disconnect because of the lack of lived experience. This is something that can’t be helped, I don’t want everyone to acquire brain injuries so a better understanding can be achieved but if a system was implemented where previous service users could be paired with the newly brain injured and integrated into the CBIT this would be extremely beneficial. In those early days you just need someone to say that they understand and have been there too. Also not all regions have the same pool of health professionals, I’ve been desperate for a physio recently but my particular region (I moved 2 years ago) doesn’t have one so tough. Not the fault of the CBIT, they work with what they’ve got but I just wish there was more consistency.
Outside of the NHS there are a handful of charities that provide counselling, activities and support groups. On paper they are a lifeline and I have no doubt they have helped countless number of people but it is a narrow slice of the brain injury population that fit into these services. I am termed a ‘high functioning’ brain injury survivor, I present well, I’m articulate and mostly physically able. My issues are invisible. When I have tried going to activities provided by charities, I don’t fit in. There’s not much differentiation for the differing levels of ability, most charities cater for visible cognitive and physical disability and I get sidelined. I have been spoken. To. Very. Slowly. at some and across the board all organisations forget you had a life pre brain injury, they don’t look at the person you are aside from your brain injury, they don’t see the skills you have or the experiences that have shaped you because they just don’t ask. You are not an individual, you are a set of symptoms. It’s difficult not really fitting in to either world, the abled and the disabled. There are many like me who feel they have no home in the world of brain injury rehabilitation yet we are not catered for.
My main gripe with charities though is the absolute lack of communication. For some reason they don’t answer emails, they ignore you on social media. I’ve been waiting on a reply to an email I sent in September to a particular charity, I was enquiring about a service they offer as it would have really helped me. No response. It is not my job to constantly prompt them until they reply, so I did what I usually end up having to do and sourced something myself using my own energy and money (both of which I don’t have much of due to aforementioned brain injury!). There is one national well known charity (who I won’t name) that have THE most apathetic attitude. They are unwilling to share anything that may help others because it’s not their ‘brand’, they ignore my queries constantly on social media (maybe it’s just me they’ve taken against, who knows?) and never respond to emails. Feeling lonely and ignored is common amongst brain injury survivors and this lot just reinforce that. Come on folks, get it together!
I have found a common thread in the UK that services are a little more reluctant to use lived experience as a tool to help others whereas across the pond in America and Canada (particular shout out to Brain Injury Society of Toronto) they actively embrace survivor testimony to spread awareness of brain injury. We’re a little overfond in the U.K. of health professionals sitting together in big dusty rooms talking to each other but not including the people with the most experience in these discussion – us! This is why the slowly increasing push towards using service user voices to inform and improve rehab is a great thing (the Oliver Zangwill centre are great at this). We are dying to be heard, to get our chance to speak, use us.
Do you have your own experiences with rehabilitation? What helped and what could be improved?