Brain injury researchers and advocates are calling on governments and GPs to improve concussion education among clinicians and urgently expand resources and services for the thousands of Australians struggling with persistent post concussion symptoms, or PPCS.
For up to 30 per cent of people who sustain a concussion, symptoms persist for months or years, with devastating consequences.
In extreme cases children are missing years of school, unable to focus on their class work or socialise; adults are leaving or losing jobs after trying and failing to cope with their physical or cognitive demands. Relationships are fracturing, moods plummeting, the risk of suicide soaring.
However, too many are suffering in silence, experts say, unable to find or pay for the care they need — frequently because of a lack of understanding among general practitioners about how to manage patients with mild traumatic brain injury, and a dearth of multidisciplinary rehabilitation services.
"I'm very concerned that there are huge numbers of people who have sustained a concussion and been told that they should be recovering but they're not, because they're not getting the appropriate interventions for them," said Natalie Foley, a neurocognitive rehabilitation therapist and director of Brain Injury Australia.
"We're seeing a significant proportion of the population living miserable lives, experiencing significant mental health issues, committing suicide, being unemployed or underemployed, not achieving their potential, when actually, if we put the appropriate interventions in place early enough we could minimise the impacts of their injury."
Concussion is the most common traumatic brain injury in Australia, with an estimated 170,000 every year, predominantly caused by falls, motor vehicle and cycling accidents, sporting injuries and assaults.
Still, its medical underpinnings — and why a significant minority of patients experience symptoms beyond the "typical" recovery period of one to three months — remain poorly understood.
"Historically, it's been thought that concussion … was temporary and people simply recovered, much like if you bruise your knee in a collision," said Terence O'Brien, Alfred Brain director and chair of medicine at the Central Clinical School at Monash University.
"But we now realise that a proportion of patients actually do have ongoing functional and structural changes, and that it does increase your risk of developing problems down the track such as epilepsy … Alzheimer's disease and now, of course, there's some fear about CTE" — a neurodegenerative disease linked with repetitive head trauma.
GPs lack confidence managing concussion
But experts across the country say that working out where to go for treatment for lingering symptoms such as headaches, cognitive difficulties, fatigue and dizziness can be challenging.
Often people will receive early advice from hospital emergency departments or GPs, but many doctors are inexperienced at managing patients with concussion — particularly those recovering poorly — and may prescribe too much or too little rest, which can be detrimental.
In a study published last year, for instance, researchers at Curtin University found GPs in Western Australia had variable knowledge about diagnosing and managing concussion patients.
Only 63 per cent of GPs surveyed said they felt confident managing the injury, while most considered "delayed recovery" to be signs and symptoms lasting beyond five days.
Given research shows most people recover from concussion within two to four weeks, this suggests doctors may be telling patients to return to work, school or sport too soon, potentially prolonging recovery.
"People definitely struggle to get appropriate care for persistent post concussion symptoms" — particularly those living in regional and rural areas, where health services are limited, said Sarah Hellewell, senior research fellow in neurotrauma at the Perron Institute and Curtin University.
"Even if you are in a metropolitan centre, trying to connect yourself to all the different specialists and care you need can be very costly, and also requires a lot of research," said Dr Hellewell, who is studying hundreds of adults with concussion to identify risk factors for poor recovery. "And if you're someone who's experiencing cognitive difficulties and fatigue, that can really compound that difficulty."
'I've had kids who haven't been to school for two years'
Another compounding factor is the lack of multidisciplinary rehabilitation services for Australians experiencing persistent concussion symptoms.
Some patients might be referred to individual specialists who can treat particular symptoms — neurologists, physios and psychologists, for example. But brain injury experts say that approach isn't always appropriate because PPCS often requires personalised treatment by a team of clinicians.
In Brisbane, Karen Barlow runs a complex concussion clinic for children experiencing symptoms beyond four weeks.
She and her colleagues spent years establishing referral pathways to the clinic via GPs across Queensland, she said, and many now know to refer children to her team early on, if they're not recovering well.
"I've had kids who haven't been to school for two years because they just could not tolerate it," said Professor Barlow, chair in paediatric rehabilitation and director of the KidStim Lab at the Child Health Research Centre at the University of Queensland.
"Kids who are away from school for a long period of time can become isolated from their friends, their mood becomes very bad, and they really live in a very dark place.
"Their quality of life is often … impaired because they've had difficulty finding help … they really feel there's no light at the end of the tunnel."
Crucially, though, there isn't a comparable service for adults with PPCS, Professor Barlow said: "One of the things I hear all the time is that there's very few places an adult can go for help."
Just recently, she said, a couple of concussion clinics have been set up to support adults with "complex recovery patterns" in Queensland, as part of the state's brain and spinal cord injury project.
"But they're still only seeing a handful of people, it's a drop in the ocean. We need to see more clinics for adults — those few clinics can't possibly cope with the demand there is for mild TBI," Professor Barlow said.
"I think what we really need is clear guidelines across the country for how these patients should be managed, and … to provide treatment services and multidisciplinary clinics where people — especially people who don't have a lot of money — can get help."
Some doctors don't take concussion patients seriously
In most states and territories, it's a similar story: brain injury rehabilitation services cater predominantly for patients with moderate or severe injuries.
There are a handful of concussion clinics around the country, often at hospitals in major cities, but many open only on a weekly or fortnightly basis, have months-long waiting lists, or cater only for children or teens.
That's if patients can get a referral in the first place, which often seems to hinge on GPs knowing clinics exist — and many don't.
"There certainly needs to be better GP education, obviously. But there also needs to be a dedicated infrastructure of specialist brain injury rehabilitation with specific expertise in the mild end of the spectrum, alongside the more severe," said Nick Rushworth, chief executive of Brain Injury Australia.
"For example, we have argued … that there should be a dedicated concussion or mild TBI clinic in each and every local health district in New South Wales."
Mr Rushworth said he's often wondered whether the "resistance" to establishing better services for people with PPCS might come down to simple maths.
That is, there are potentially thousands of Australians who need help for a condition which, in his experience, is still viewed by some health professionals as a minor inconvenience.
"There is a tendency among clinicians who work at the more severe end of the traumatic brain injury spectrum to discount the experiences of people with persistent post concussion symptoms," he said.
"I've had many, many clinicians say to me … as soon as you start talking to them about taking on people [with PPCS], ‘Oh my god, the floodgates are going to open … I'm going to have all these OTs, physios, speech therapists who are dealing with people with permanent, profound disability who are going to be diverted to looking after … 'the worried well'."
Taking out the 'tough guy' approach
Professor Barlow is leading a team of researchers developing national clinical guidelines for mild traumatic brain injury and post concussion symptoms, funded by the Commonwealth government's Medical Research Future Fund.
The idea is to compile current advice on how patients and healthcare workers should manage concussion in the first few days, weeks and months, and when and where to seek help if people aren't recovering.
The guidelines won't be released for at least 18 months, but one of the most important messages she wants to stress in the interim is that concussion must be taken seriously, including in sporting communities.
"I think there's still this 'tough guy' approach in Australia — that if you're tough, you'll carry on," Professor Barlow said.
"But it has to be okay for people with a concussion to sit out. So 'If in doubt, sit them out' still needs to be the main message."
The other is about rest. People with concussion were once advised to rest completely in a dark room until their symptoms resolved, but mounting evidence suggests too much rest — specifically, too little aerobic exercise — can prolong recovery.
"It's vital that you do rest, but just for one or two days — we don't want you sitting in a dark room, doing nothing," Professor Barlow said.
"So take it easy for one or two days, then after that, we want people starting to walk to the park … making a gradual return to exercise."
Gill Cowen, spokesperson for the Royal Australian College of General Practitioners, said there were a range of resources to help GPs manage patients with sports concussion, including the Concussion in Sport Australia Position Statement, and the Connectivity website, which aims to increase education and awareness about traumatic brain injury.
"However, sports-related concussion makes up only 20 per cent of concussions, with the majority … related to falls, road traffic crashes and assaults," she said.
There is "no doubt", Dr Cowen added, that more public multidisciplinary concussion clinics would be a "fantastic resource" for patients experiencing persistent symptoms.
"This would provide holistic care for patients with prolonged symptoms with the aim of optimising recovery," she said.
"It would also allow those without private [health] insurance timely access to services specific for post concussion symptoms."
Finding strength in community
A spokesperson for NSW Health told ABC News there were 15 brain injury services across the state that accepted referrals for people with mild traumatic brain injury or concussion (local clinicians said they weren't aware this was the case).
"In addition, there are concussion clinics available at The Children's Hospital at Westmead, Royal Prince Alfred Hospital and Royal North Shore Hospital, via referral from a GP."
NSW Health was also developing new mild TBI fact sheets for adults discharged from emergency departments and working to improve ED doctors' awareness of concussion assessment tools, the spokesperson said, as well as "to increase access to information and local referral options for GPs".
In Victoria, there is just one multidisciplinary concussion clinic — at the Epworth private hospital in Melbourne.
Health Minister Mary-Anne Thomas did not respond to questions about whether the government would be taking steps to improve the services and resources available to people experiencing PPCS.
In Western Australia, meanwhile, Dr Hellewell said she and her colleagues speak every week to people struggling with ongoing concussion symptoms.
"We say, 'Have you contacted the State Head Injury Unit?' And they say, 'No, I've had these problems for five years, and no one's ever told me about the State Head Injury Unit' — which is quite surprising.
"But it just shows there are no guidelines and the education and information that GPs are getting is often not up to date."
In the meantime, she said, many Australians struggling with concussion were finding support in online communities — there were several Facebook groups, for instance, that could help people better understand their symptoms and feel less alone.
"It doesn't always, but if your personality changes, people don't really know how to speak to you … They don't know how to approach your injury, what your limits are, especially in social settings, which can be really fatiguing," Dr Hellewell said.
"Going out to restaurants or cafes, where there's lots of lights and sounds — some people just can't do that after a concussion and I think it can be quite difficult to articulate why.
"So there are a lot of people having difficulties with their relationships and friendships after injury — but being able to find strength in a community can be really important for some people while they're recovering."
