Bridging the Gaps – How We Can Help
Our Aims – How We Can Help
The aims of GBIA INC:
- To provide information and strategies for self-regulated learning to support people living with acquired brain injury, including those who are diagnosed but are not receiving full medical support or follow-up care or may have completed rehabilitation and have no further support
- To provide information that will encourage people to improve their health and understanding of their cognitive impairments and symptoms
- Help individuals understand what services are available and how to seek a referral at any stage post-injury. We appreciate many people don’t know what help is available to them or might be unaware that any help exists at all
- Through global events: raise awareness and educate the public to improve cultural understanding of brain injury and associated vulnerabilities, brain health and mental wellness, and to teach about needs and adjustments to improve prevention
- Use public and awareness events to reach people who are unaware that any help exists
- Use evidence captured through research that we hope will be incorporated by health and government policymakers to improve the availability of services for all and with a view to providing more online rehabilitation tools, to improve patient outcomes and experiences at the acute and post-acute phases including how best to improve current medical provision, and to enhance health planning for the future.
We will do this through:
- partnering and collaborating with other organisations, advocates and professionals
- social media
- this website’s content and research programme
- public events and challenges
- enlisting your support
Other Ways We Can Help You:
- Provide you with the information you need to be able to understand what has happened to you
- Provide tools and strategies to help you take back control
- Provide information for families and friends
- Help you understand how you can help yourself
Our private Facebook group, Unravelling Brain Injury, is a space where we provide resources to live events, educational webinars with experts, and free online cognitive and executive retraining and workshop events.
Our open community page on Facebook runs monthly themes to keep you engaged and learning! Please like/follow, ‘Global Brain Injury Awareness‘
- Filling the gaps
- Who is most likely to be affected?
- The Medical Gaps
- The Outcomes
- Get Involved
- Further Information
The main aim of this site is to offer information and strategies to enable people to help themselves at home.
To do this we use scientific research, specialist organisations, expert advice and knowledge, plus peer-led psychoeducation.
We want to highlight:
- The gaps in the provision of services
- Why this happens
- Who is affected and how do gaps affect 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 continue to struggle on their own – we aim to fill the gaps until things change and to encourage that change by using supportive evidence.
We are aware that there are many millions of people across the world who are living without any medical support following a brain injury.
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 alone and isolated while 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:
- Lack of awareness amongst medical professionals
- Lack of follow-up care and treatment
It is generally believed that the people most affected are those who are living with the outcomes and symptoms of mild traumatic brain injury (mTBI). However, while many concussions / mTBI go unreported and untreated, many moderate, or even severe injuries, are also overlooked. Even where a brain injury diagnosis is made but has not been classed as a clinical urgency, people can still fail to be given information or a referral for rehabilitative treatment.
The general awareness gap is larger than many institutions have realised and the lack of recognition affects more people than has 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.
There are loopholes in the medical system. In fact, there are two major loopholes, which cause people to suffer so many horrendous life outcomes after being dismissed following a TBI.
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 or small bleeds.
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.
Although it doesn’t happen everywhere, you should:
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 GPs 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 GPs.
Very few medical training facilities understand the need for GPs 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.
These loopholes create disastrous long-term health, social, and economic outcomes:
- 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, 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 the personality of their loved one 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 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.
Probably the most critical thing we can do to bring real change is to get involved in research.
Health Systems and Governments don’t change through lobbying – they change because the evidence supports the need for new ways of doing things.
Without your help, we can’t provide evidence that there are a variety of unmet needs. Your experience is immeasurably valuable and by registering to be involved in our research you will help us collect the data we need to bring real change.
We will build an offline 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 work GBIA CIC undertake please let us know by filling in the registration form.
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 Facebook Community 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 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 relate to you. 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.
Don’t forget to share in groups you are a member of!
People still ‘fall through the net‘ and don’t get any help from specialist medical services. Sometimes this is for financial reasons, or because insurance doesn’t cover therapy or medication, or only covers necessary or limited treatment.
There are millions of people who are overlooked because they were not initially diagnosed, were dismissed, or because they haven’t been able to find a doctor who understands that the brain can be injured. Medical schools provide training to doctors specialising in neurology and so general doctors can qualify without any experience in brain injury. Change can be slow.
Some people are isolated for prolonged periods for these reasons or because they have communication and relationship problems with family and friends and find themselves without anyone to turn to for support. Please help us to reach them.
Difficulties understanding changes and outcomes can happen even when people are receiving specialist help – there can still be gaps in comprehension and also in the information given. For example, ‘how’ things are explained can have a significant impact on what is understood.
Our ethos is: – If you need help, you should get it.
We need to do more at the ‘front end’ to prevent an array of unnecessary social and economic outcomes. With our partners and other organisations, GBIA is working on this!
Families and friends can also struggle because of a lack of information. It is tremendously difficult to know how to help, support, and know what to do for the best for a loved one, when you are on a very steep and sudden learning curve, and there is little information to help.
On this site
Everywhere possible descriptions are given for what it is like to live with brain injury symptoms and outcomes from the ‘inside, ‘and also what is often observed or thought looking ‘in’ from the ‘outside.’ Perspectives are different depending on whether you are experiencing brain injury directly or indirectly. This approach and concept are explained further in The Inside and Outside of Brain Injury.