Filling the Gaps
The main aim of this site is to offer information. We bring information from scientific research, specialist organisations and peer-led psychoeducation.
*Why this happens
*Who is affected
*How it affects people
*What is being done
*How you can get involved and help
There are two main loopholes in our current systems that allow people to fall through the cracks. Millions of people are not given any information following a head injury and are not referred to specialist services. Until protocols and systems are updated people struggle on their own – we aim to fill the gaps until things change.
It is estimated that between 70 and 90% of all treated brain injuries are classed as ‘mild.’ This generally means that there was no loss of consciousness. However, the severity of the initial injury is not an accurate indicator of long-term problems and many people who have been diagnosed with mTBI (mild traumatic brain injury) can struggle for many years with lasting impairments and symptoms. It is now becoming more widely understood that concussion / mTBI involves complex pathophysiological processes which disturb brain function.
We recognise just how many people go without either medical or familial help and support following a brain injury. Some people don’t get either, and many people find themselves left to get on with things whilst struggling desperately with cognitive impairment, physical symptoms, and often with emotional and psychological trauma.
There are many wonderful brain injury organisations and support groups across the world who share the same aims of filling the gaps. The UK, USA, Canada, New Zealand, Ireland and Australia have a network of organisations and groups offering support and information to people living with brain injury and their families. Services do vary depending on the location and size of a group and in some areas, this can be problematic. For example, not all groups will be able to offer any special help to children.
Other countries also have support organisations and can be found by an internet search. Many countries rely on government, health or educational institutions to provide information.
Many things affect the services a group will be able to offer. This may be demographic or geographic issues, demand for services or funding.
There are no government statistics in any country that tell us exactly how many people pass through emergency rooms with undiagnosed brain injuries or go unreported and unassessed by medical professionals. The estimates tell us that the number could be as high as 75% of the ‘treated’ and known numbers… This could amount to 750,000 people falling through the medical net every year in the UK alone!
There are two main reasons for this:
Who is most likely to be affected
The general awareness gap is larger than many institutions have realised and the lack of recognition affects more people than have previously been understood.
In some areas it is often the case that if you are ‘walking and talking’ then it is assumed you will recover on your own. There is an expectation that if there is no clinical urgency that things will sort themselves out in a few weeks or months.
We are aware of many people who have presented with severe loss of function or who have suffered a stroke who have also been lost to the medical system and haven’t had any or sufficient medical support, treatment or help.
The medical gaps
Medical protocols focus on and address the needs of ‘clinically important’ patients. If you are in this category you will see a neurologist or neurosurgeon.
If you don’t fall into the above category: –
Depending on your GCS (Glasgow Coma Scale) score you may or may not be offered a CAT scan. CAT scans look for swelling, large areas of bruising, or large bleeds… CAT scans do not show neurological tears / shearing.
If you are not offered a scan you may be:-
1. Kept in for 24 hour observations and then sent home
2. Be sent home and told to take an aspirin and rest
You may or may not be given a ‘preliminary’ diagnosis.
1. be given information
2. be given a follow-up appointment
A letter should be sent to your general practitioner. The chances are your doctor will not act on this. Even if you present to your doctor, it is common for people to still be dismissed.
Loophole number one refers to ‘gaps’ in emergency room protocols that:-
1. Do not make follow-up appointments for patients following head injury
2. Fail to make a referral to a specialist who will be able to evaluate the extent of the injury
3. Fail to give GP’s adequate information if patients present to them
4. Fail to give information to the patient or family
Loophole number two refers to the general lack of awareness amongst GP’s.
Very few medical training facilities understand the need for GP’s to be aware of the long-term effects that can occur after head injury. They tend to only train those who specialise in neurological fields.
This lack of training also leads to many cases of misdiagnosis. Traumatic brain injury is often misdiagnosed as stress, anxiety, depression, psychological disorder or mental health issues in general or sometimes people’s concerns as considered hypochondriacal when in fact they may have hypopituitarism or another hormonal dysregulation amongst their symptoms.
Changes are being made and accomplished. Please contact your local or national brain injury organisation for more information. They may be running a campaign and will welcome your support.
* Symptoms and outcomes can continue for years, or even decades, when unaddressed
* The lack of treatment can prolong or exacerbate common symptoms such as fatigue, sleep problems, and headaches etc
* General health begins to deteriorate because the bio-chemical cascades and neurological damage are not treated
* Families are torn apart
* People lose their jobs, their income, and their homes
* There are higher risks of mental health issues, homelessness, bankruptcy, imprisonment, and, suicide
* People lose their friends and family and become socially isolated
Sometimes, as a direct result of people with ‘invisible’ injuries falling through one or both of the medical loopholes, there can be a lack of support and understanding amongst families and peers as well. It can be difficult for people to understand the seriousness and depth of trauma when there is no real explanation or diagnosis and rehabilitative programmes aren’t provided. Many people assume that their loved one will recover in similar ways to what we would expect with any general physical trauma, and can even believe they are malingering when this doesn’t happen.
When people are given information, referred to specialists for a full evaluation that results in a treatment programme, and their injury is taken seriously, outcomes can be very different.
Despite trying their best there are people who are simply unable to deal with the sometimes overwhelming changes a brain injury can bring. For some, feelings of inadequacy can become too much causing people to move on with their own lives without having had the chance to fully understand the propensity their loved ones have for re-mastering theirs. When given support and information people want to get involved and do everything they can to help.
Bad information can be just as damaging as no information. Many people are told that their loved ones personality has changed for good. This isn’t true; the personality has not changed – the behaviour someone exhibits has. How long the changes in behaviour last for depends very much on what treatments and therapies are provided. People do find their way back…
We have created this site to bring awareness about these common outcomes and to try and answer those questions which arise most frequently. We also want to try and help people who are isolated and alone to be more able to help themselves.
We will build an off-line database of advocates and partner organisations. Your privacy will always be respected and we will never share your contact details or information with anyone. We will only email you when there is news you need to hear about. You can register below.
If you would like to be actively involved in the new GBIA CIC please let us know by filling in the form below.
Sharing is Caring
If you would like to help, but are not at a stage where you can be actively involved, then we would love for you to do all the sharing you can. All our articles and blogs are uploaded to the GBIA page and if you like or follow this you can’t miss a thing! We are all doing this for each other to try and to reach those who are isolated and without help. The thing is that most of us, and most of our loved ones, have felt like this at some stage or another.
Share anything that meets your eye, but especially the things you have found useful or have felt a synchronicity with. If you can’t think of a message to add this is okay – there are no rules or regulations – just an opportunity for all of us to be the best and greatest versions of ourselves that we can be.
Other than sharing the pages on this site you can also share articles and posts from the Global Brain Injury Awareness open community page we run on Facebook. To pick up new posts and articles you just need to click on the like or follow buttons at the top of the page. You can also share to any groups you are a member of.
If you have a Twitter account you can follow us @Global_BIA
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