Raising awareness of the risks of head injuries and their impact on people’s lives
Scotland was a very apt choice of host for the International Brain Injury Association World Congress last month. The congress, which its organisers believe is the largest of its kind in the world, saw around 1,200 delegates from over 40 countries gather in Edinburgh to discuss a wide range of issues from concussive injuries in sports through to blast injuries in the military and the effects of injuries in later life.
Addressing the congress Public Health Minister Michael Matheson remarked: “It’s entirely appropriate, of course, that this congress is being held in Scotland given the substantial contribution that Scots have made to improve our understanding of brain injury and its long-term effects.” These contributions include major innovations such as the Glasgow Coma Scale, which was developed by Sir Graham Teasdale and the late Professor Bryan Jennett in the 1970s, which revolutionised head injury care and is still used around the world as a simple but reliable measure of early severity of injury.
Similarly, the Glasgow Outcome Scale, which is a scale of disability as a result of traumatic brain injury in the community, is the most widely cited outcome scale around the world, says Tom McMillan, Professor of Clinical Neuropsychology at the University of Glasgow and President of the International Brain Injury Association, who adds that other countries are seeking to replicate and are benefiting from Scotland’s “foresight” in setting up “large and fairly unique” cohorts 15to 20 years ago to examine later outcomes after a head injury.
Matheson told the congress that Scotland is “committed to building on this legacy”. And yet despite Scotland’s proud history and continuing research in this field, general awareness remains low. “I suppose I’d say it is not one of the trendiest topics in terms of research interest or a priority for managers to develop services for people with head injuries. There have been other priorities in cancer, stroke and so on, cardiovascular problems have been prioritised. So at times I think one can struggle to get [the issue of] head injury heard,” McMillan says.
There is a Scottish Intercollegiate Guidelines Network (SIGN) guideline on early management of head injuries and another on its way on rehabilitation, McMillan says. However, he adds that rehabilitation and follow-up services in Scotland are currently “very variable”.
Incidence of head injury is high in Scotland. According to the Scottish Government, each year around 15,000 people are admitted with a head injury to hospital in Scotland. Acquired Brain Injury (ABI) can lead to a mixture of physical, cognitive, communicative, emotional and behavioural changes with profound consequences for the individual and his or her family and so Matheson told the congress that the Scottish Government is committed to raising awareness and minimising the risk of brain injury occurring in the first place.
McMillan agrees the risks and consequences of head injury should be “flagged up”, highlighting in particular the strong association between drinking to excess and head injury. “In Scotland the highest frequency cause is not, in fact, road traffic accidents as they are in some other places in the world. It is falls and assaults and they are often associated, in about 60 per cent of cases, with the person having been drinking.”
And yet, he says, many fail to associate the two. “You only actually need to fall from your own height and hit your head off the ground potentially to kill yourself. And assaults. People are less inhibited, they are more likely to get into arguments, less able to control themselves when they’ve been drinking. People appreciate that widely. But what they don’t appreciate, I think, is the potential consequences of the head injury.”
Brain injuries can happen to anyone at any time, agrees Luke Griggs, communications manager for the UK-wide brain injury charity Headway. However, it is sometimes referred to as a “hidden disability” as there can often be no physical manifestation of the injury, he explains. As such there are “no solid statistics” to show how many people are affected by brain injury in the UK as it often goes misdiagnosed or undiagnosed, he says.
However, the charity estimates that there are in excess of half a million people in the UK of working age who are living with the long-term effects of brain injury. While you can’t eliminate risk entirely, Griggs points out there are things people can do to protect themselves. One issue the charity has been passionately vocal about has been the use of cycle helmets.
“We are a pro-cycling organisation. We think cycling is great exercise but we believe it should be done safely and part of the way to do that is integrated measures, including more cycle lanes, better driver and cyclist education and also the cyclists taking responsibility for themselves by obeying the traffic laws, wearing high visibility jackets and helmets.”
Griggs says the charity has also had “a lot of dialogue” with the London Mayor on the issue of the “Boris bikes” scheme, urging them to give stronger, clearer messages to people about the importance of protecting themselves by wearing a helmet. “We understand that providing helmets with every bike is not possible for hygiene reasons, for theft of the helmets and what have you. It just wouldn’t be practically possible. But the information provided by Transport for London on the hire bikes contravenes the Highway Code.
“The Highway Code says you should wear a helmet. On the actual information points on the Boris bikes it gives ten pieces of advice and the final piece of advice, which is basically down by your knees so I don’t know how many people are actually going to read it, is you might want to consider wearing a helmet. That is all it says. No other advice. They are being completely irresponsible by not giving stronger messages to people.”
The combination of inexperienced cyclists, tourists who are unfamiliar with the roads and people dressed in work attire riding without helmets in one of the busiest transport cities in the world is “a recipe for disaster”, he says. With Glasgow said to be considering a similar scheme, what advice would Griggs give?
“We think cycling is good safe exercise and should be encouraged but the bottom line is all cyclists should wear helmets and we are pushing for helmet use to be encouraged. More awareness campaigns need to be run. We believe cycle helmets should be compulsory, particularly for children and vulnerable road users. So if you are going to run a scheme like this it is imperative that you encourage cyclists, in the strongest possible terms, to wear helmets.”
Brain injuries don’t just affect individuals but can transform the lives of entire families, he says. “It can change an individual and change every aspect of them. So, we have examples of people saying I lost my husband five years ago even though he is sat right in front of me. I’m now his carer, not his wife. I’m grieving for the man sat right in front of me.”
The charity recently surveyed carers for people with brain injuries, the results of which will be published during Action for Brain Injury (ABI) Week next month. Griggs says the findings highlight the unique challenges of caring for someone with a brain injury and the feelings of isolation and lack of support carers can experience. And yet the job they do is invaluable.
“It is a vulnerable group of people and if the carers aren’t available to care for them, the ones they love, there is nobody there to pick up the pieces. Often what you’ll find is if someone has to go to a home or be cared for long term then there aren’t enough facilities specifically for people with brain injury. So they end up being cared for in mental health facilities or facilities that are for older people with dementia,” says Griggs.
Caring for someone with a brain injury can require a great deal of patience and sacrifice, says Griggs and their efforts deserve to be celebrated and supported. “Lives of whole families and carers are changing in an instant. They deserve more respect and they deserve more support.”