Hopelessness can’t be predicted within the first three days a brain injury, says Dr John Whyte. Yet, as he has learned in decades of working with disorders of consciousness (DOC), many doctors assume otherwise.
Faced with an unconscious head trauma survivor and their devastated loved ones, all too often decisions are taken to unplug the machine; halting potential recovery journeys before they’ve begun.
“Research has shown that a large proportion of the deaths after a severe brain injury are within the first 72 hours of the injury,” says Whyte.
“The family and caregivers make the conscious decision to withdraw care and let the person die, presumably based on the shared perception of the acute care doctor that the situation is hopeless.
“The problem is, we have good data which shows that patients who look hopeless in the first three days can go on to be independent.”
Whyte (pictured) is founding director of the Moss Rehabilitation Research Institute in Philadelphia and the soon-to-be recipient of the Gold Key Lifetime Achievement Award from the American Congress of Rehabilitation Medicine.
He has been working with, and extensively researching, DOC for over 35 years, and has seen much progress around diagnosis and treatment in that time.
But looking at America’s general approach to DOC patients today, he sees a hugely concerning picture.
The US is, of course, affected by the big DOC challenges faced universally – such as misdiagnosis which, according to a systematic review published in the British Medical Journal in 2016 (Kondziella et al), could occur in as many as four in 10 vegetative state cases.
Pessimism and a sense of treatment futility in acute care that sees lives ended arguably prematurely is also a global issue.
A major concern specific to his native US, however, is the care pathway currently taken by most DOC patients.
Health policy, funding changes and a general lack of research have conspired to create a system which Whyte believes is failing DOC patients who may have a genuine shot at recovery.
It’s a system in which the majority of DOC patients are discharged from acute hospitals to non-specialised nursing homes within weeks of their injury.
This, says Whyte, is denying thousands of people with the potential to regain lost functions and independence, access to the intensive rehab they need.
“A nursing home in the US is not just a place that isn’t providing intensive rehabilitation, it’s a place that isn’t providing intensive medical management either.
“You don’t have to have a physician rounding on patients every day or specialty consultations. You can transfer a patient who gets sick to an acute care hospital when that happens, so you don’t have to have backup in your institutions.
“It’s not a place where you should send a medically-fragile, complicated patient who needs intensive medical oversight.”
Today’s situation has been decades in the making.
When Whyte’s career began in 1984, care was built around a fee-for-service health insurance system. This meant providers charged daily for the services they delivered.
“A number of for-profit healthcare companies I believe saw DOC patients as good business. They were impaired for a long period of time, and some of them indefinitely.
“You could continue to dream up treatment goals and give them physical therapy day after day and charge for it.
“I saw patients who were recently injured and progressing quite nicely, and those who had been injured years ago, and weren’t changing at all.
“Clinicians were writing active treatment goals for all of them as though they were all the same – and the insurance companies were getting billed as though they were the same too.
“At some point, the payers said ‘we’re paying a lot of money and it’s not really clear that this is cost effective’. At that time there wasn’t data to say what we were doing was or wasn’t cost effective.
“They basically decided that it wasn’t cost effective to pay for this for anyone.”
And so began what Whyte calls an “historical pendulum swing” towards the current situation.
Increased pressure for results
By the end of the 1980s, healthcare was increasingly being charged for in more capitated ways.
In acute care, a set total amount, rather than daily fees, might have been billed for looking after a heart attack patient, for example.
This intensified the pressure to deal with patients as efficiently as possible and to justify the cost of treatments and therapies.
“In this transition, payers came to the conclusion that paying for rehabilitation for unconscious or minimally conscious patients was not cost effective.”
Misconceptions about DOC-related rehabilitation also contributed to its demise.
Whyte says: “The payers also incorporated the logic that rehabilitation as an active service requires that patients consciously participate in it.
“Patients learn how to walk, operate a wheelchair and use a memory notebook to keep track of their appointments et cetera – this is the familiar model of rehabilitation, which assumes that the patient needs to be an active participant in the process.
“But that’s one model and that’s assuming that if they can’t be an active participant, then the whole process is worthless, which we are increasingly having data to say that’s not the case.”
Many healthcare payers insist on only funding admission to acute inpatient rehabilitation programmes if the patient is at least minimally conscious and undergoing identifiable functional improvement.
As Whyte notes, this is particularly challenging since a number of studies show that misdiagnosis of a patient’s level of consciousness is “very frequent in the hands of non-specialists”.
A paper produced by Whyte and Risa Nakase-Richardson in 2013 analysed existing research findings on outcomes, comorbidities and care needs relating to DOC.
It found evidence in several articles of a high burden of medical comorbidity and high rates of rehospitalisation in DOC cases.
It also found that the rate of these complications can be reduced with active medical management and, possibly, brain injury expertise; both of which are lacking in most nursing home environments.
Perhaps the headline finding was that: “Collectively these studies suggest that a large proportion of patients with DOC who are admitted to inpatient rehabilitation regain consciousness and even orientation; and that their further recovery can go on for more than two years and that structured programmes that care for patients with the worst prognosis may result in surprisingly positive outcomes.”
Reasons for optimism
Not all DOC patients are moved into nursing homes in the US, and Whyte is among the relatively small band of experts working with DOC clients in specialist rehab facilities. This work has enabled some useful research.
“In one of our own studies, we asked ‘what’s the trajectory to becoming more medically stable and is it closely related to how long ago the patient was injured, or how long ago they arrived at the rehab hospital?’
“The answer is that there is no relationship with how long ago the person was injured and a strong link to how long ago they got to a rehab hospital.
“This gives us some evidence that it’s not just if you wait, they’ll get better, but if you know what you’re doing, identify the problems, treat them and manage them, then they get better. But none of this is going to happen in a nursing home.”
Part of the reason that health insurance companies are so pessimistic about DOC patients, says Whyte, is not just that they think they’re wasting money, but that they’re wasting it on people who can’t get better, no matter how much money is spent on them.
“But this is simply not true in a lot of cases. We’ve shown that even when you admit a patient to acute rehab in an unconscious state, they are likely to regain consciousness while they’re in rehab.
“Some of them are likely to even resolve their confusion and start becoming much more actively engaged while they’re in rehab.
“By five years, of the patients who were admitted to rehab while unconscious, about 20 per cent are living independently or rated
“So it’s a minority but not a trivial minority. And a lot of the other patients are getting better in terms of daily living and mobility, though they’re not to the point where they could be independent or employed.”
The odds of recovery for DOC patients taken on the well-worn path from hospital to nursing home may be much slimmer than those who receive intensive rehab.
In fact, such statistics are not known, partly because the current situation has thwarted research, as Whyte explains.
“That patients with DOC have been substantially triaged to nursing homes has had the unintended consequence of making it next to impossible to do research because most nursing homes in the US have no research infrastructure.
“It’s also the case that most nursing homes aren’t specialised for patients with DOC. They can’t afford to be because they’re expensive patients to take care of, so no home has a whole bunch of them [together].
“This means if I wanted to do research in nursing homes, I’d need almost as many nursing homes as I had patients in my study, because there’s going to be one patient in this nursing home and two patients in that one.
“It’s essentially infeasible to learn about disorders of consciousness from patients who are in nursing homes.”
An ideal solution to America’s DOC challenge would be a randomised controlled trial in which intensive rehab and nursing home approaches are compared, to prove to payers which is best.
“The payers would like to see a trial in which you take a whole bunch of patients with recent serious brain injuries and send half to an intensive rehab programme, and the other half to nursing homes like we’re doing in the US now.
“You could then measure both the cost and the long-term outcome of those two systems.
“Everyone agrees that that would be the most rigorous way of answering this question, but pretty much everyone also agrees that it is never going to happen.
“For insurers to ask for that is sometimes a disingenuous request as they know it’s never going to happen and therefore they will never change their policy.”
Logistical problems and the sheer cost of such a study make it unlikely and focus has instead been on “triangulation from other sources of evidence”.
This has culminated in the issuing of an evidence-based clinical guideline last year.
“We pulled a vast amount of literature together on diagnosing DOC, predicting prognosis in DOC, and treatment of patients with DOC.
“For the first time, there was sufficient data to make strong statements about many important things that have policy implications.”
Whyte was involved as an author, while it was jointly produced by the American Academy of Neurology, the American Congress of Rehabilitation Medicine and the National Institute on Disability, Independent Living, and Rehabilitation Research’s (NIDILRR’s) Traumatic Brain Injury Model System.
Sweeping changes needed
It concluded that the combined weight of research mandates changes in clinical care and healthcare policy for the DOC patient population.
Among other things, the guideline supports access to specialised multidisciplinary rehabilitation for patients with DOC and notes that the pessimism that drives early withdrawal of care is not warranted by the longitudinal data.
“One of the points in the new guideline is that prognosis can’t be accurately predicted early, and therefore, big decisions should not be based on the notion that it can.
“Another is that there is sufficient evidence now that these patients can benefit from, and need, high intensity complex rehabilitation services.
“This review itself didn’t find randomised controlled trials of the kind that we would ideally want, but essentially, used the same logical argument, that we have a high burden of complex disease and a high potential to get better.
“We know that in other situations which are complex and need intensity, it helps to concentrate people in a facility where expertise can be developed, and so on. So putting all the evidence together, these highly respected and influential bodies basically said that these people are candidates for intensive rehabilitation and should have access to it.”
The guideline also supports the use of Amantadine, a medication commonly associated with Parkinson’s treatment, in traumatic DOC. This was the direct result of a study Whyte was involved in.
“We published the first randomised control trial that actually showed that a drug made a difference in the rate of recovery. Before that, everybody was giving drugs off label and crossing their fingers, but nobody had good data.
“I hate to even say it out loud, but it took us 14 years to publish the trial because we had to build the research network and get funding to do the trial.
“Then it took us six years to enrol 184 patients, so that was tremendously inefficient, because we were cobbling together small programmes that only exist rarely.
“If policy change happened so that large rehab institutions were treating these patients routinely, the pace of research would dramatically accelerate.”
The Amantadine findings have been adopted into practice with “almost every patient with a traumatic disorder of consciousness being given the drug soon after injury”.
Other parts of the guideline which require more significant behavioural changes have not yet been heeded, however.
“Published evidence doesn’t instantly lead to healthcare behavioural change. It takes active work to get people to change their practices and there’s an overarching issue of how do we get translation to happen at a faster rate.
“But there are additional obstacles here in the US. We are terribly concerned about the overall cost of healthcare period. Anything that involves spending more rather than less is going to be met with initial resistance.
“It would be great if we had really good data on cost effectiveness. If we had evidence that spending money now will save money in the long run, that would facilitate the political policy conversation.”
Whyte believes access to intense rehabilitation would indeed save in the long run, especially in reducing acute care hospital visits.
“Some patients could be going home instead of being cared for in institutions so that would save money.
“Also, you have patients bouncing back and forth between nursing homes and acute care hospitals for years, getting acute things treated that don’t ultimately move them ahead in any way.”
But in the US, the economic argument is clouded since “the pot of money that pays to take care of you long term is not the same pot of money that pays for your health insurance in the short term”.
Whyte says: “Many people are getting their health insurance from a private company – an employer-based company.
“Once a year, they can move to a different insurance plan but if they lose their job, which they will when they have a disorder of consciousness, eventually they will move off any of those private plans onto a government one.
“So the bottom line is that the company paying for their early healthcare won’t be paying for their long-term costs. Why would the insurer care about the two, three or five-year cost of recovery?”
There are also institutional barriers to improving DOC care in the US in line with the recent guideline, he believes.
For example: “If I’m working in an intensive care unit, we are being paid a capitated rate for every patient with severe brain injury, and therefore we need to discharge that patient as quickly and efficiently as we can.
“There are a million nursing homes that I can choose to discharge that patient to but there might only be one or two rehab facilities.
“They may or may not have a bed the day that I’m ready to discharge the patient, while my hospital administrator is breathing down my neck to get this patient out of here. So there are implications for rehab capacity.”
Also, the majority of rehab facilities with brain injury programmes are not currently set up to accept DOC patients.
“They don’t have expertise in that very challenging population.
“If and when the policy changes, there will need to be a big gearing up to enhance the skills of rehab providers to care for this patient population, because most don’t know how.
“So it’s a very complicated problem that will require changes in payment, institutional capacity and provider confidence.
“But at least now, for the first time, somebody other than providers who are totally invested in this patient population are saying the data justifies [change].”
Hope for the future
Despite the considerable challenge ahead in opening up access to intensive rehab for people with DOC, Whyte is upbeat about the outlook for DOC patients generally.
“I’ve seen tremendous progress in my lifetime, so that gives me optimism that there will still be more. When I started, there was no relevant data about any of this.
“Nobody knew how much patients recovered, nobody could list their medical needs, nobody could tell you what their long-term prognosis was and nobody could list a treatment that had evidence that it would work.
“All of that is different now; it’s not perfect, but we have meaningful answers to all of those questions.
“There’s a lot of research going on around improving the detection of consciousness, because we know that we miss people who are conscious that we think are unconscious.
“There’s been a lot of work on both behavioural rating scales but more recently work using functional MRI, or EEG-based techniques, to actually show that patients who have no behaviour at all that looks conscious, can sometimes be found to have thinking that is.
“That’s an intriguing finding that we don’t know what to do with yet.
“What are you going to do with those patients? What’s the rehabilitation strategy when the person has no movement that can connect to communication devices or anything like that? We’re a long way from being able to communicate with brainwaves.”
Click here to find out about Dr John Whyte’s mission to revolutionise how rehabilitation treatments are defined.
The psychiatrist fighting for domestic violence victims
Australia’s New South Wales government has promised to improve brain injury testing for domestic abuse victims after a psychiatrist drew attention to inconsistent care for vulnerable women. Psychiatrist Karen Williams urged the government to adopt a concussion protocol for family and domestic violence victims after doing her own research and being shocked at what she found.
It started when Williams noticed the disparity in how her patients were diagnosed and treated.Williams specialises in the treatment of post-traumatic stress disorders (PTSD), often with military, police, emergency personnel and other first responders.
But she also treats the general population, the vast majority of whom are women with histories of child and domestic abuse.
“I was getting two populations,” she tells NR Times. “The military patients, who are clearly identified as having PTSD, and the female population, who are mostly identified as having depression, anxiety and personality disorders, but had incredibly high rates of abuse in their histories.But Williams saw that whilst both groups had similar symptoms, and similar levels of trauma, they had very different treatment options.
“There’s a lot more funding put into supporting traumatised soldiers and first responders than there is for women who have experienced trauma within their home.
“In Australia, we don’t have much at all for women and children victims of abuse.”
This was a particular concern because of the amount of times Williams had heard about multiple head injuries and concussion among women who were victims of domestic abuse, which is similar to boxers and those player high contact sports.
“Women who’ve been unconscious several times or strangled have symptoms such as memory deficits, insomnia, migraine and mood swings, which all could be put down to PTSD and depression, but also brain injuries.”
But if Williams wanted to find out if a patient had a history of brain injuries, she would have to refer them for neuropsychiatric testing, which costs up to AUS$1000.
“This is completely unaffordable for many abuse victims so it just doesn’t happen, so we don’t investigate women who’ve had brain injuries.
“One brain injury unit told me they would consider taking on a patient if they could provide evidence that an assault happened – such as hospital records.
“This completely fails to take into account that the vast majority of domestic violence survivors will not report any assault to anyone and will not have so-called evidence.”
Then, Williams was speaking to a colleague whose son had had a head injury in a sporting field.
While they were together, a nurse rang to follow up the treatment he’d received in the emergency department.
“The nurse asked how her son’s personality and memory was, and gave a fantastic run-down of the symptoms that can happen after a concussion,” Williams says.
Williams was shocked – she’d never heard of someone ringing up women after a head injury in a domestic violence case.
She rang the local emergency department and asked about their protocol following a head injury obtained during sport.
She was given a detailed outline of the observations they take, their plan over the weeks following the patient’s injury and the advice they give the patient.
Williams called several emergency departments in other Australian states, and whilst all had a protocol for sports players following a concussion, none said they had a protocol for women who had been the victim of domestic abuse.
“There wasn’t one place that said they had a particular protocol.
“If they knew the woman had had a head injury they’d give them the basic head injury protocol, but nothing specific that took into account the very individual needs that a woman with a head injury in a domestic situation might have,” she says.
Williams says research indicates health care professionals correctly identify family violence victims about one per cent of the time.
“In sporting players’ protocol, there’s a recognition that says that your patient may not know what they’ve experienced in the past was a head injury, so the advice is to be really explicit. They’re given a list of questions to break it down with that player to make sure they understand what could be a head injury.
“There is opportunity for scanning, and neuropsychological testing if there is evidence of persistent symptoms.”
Williams says doctors should be going through the history of women, too, to see if they’ve lost consciousness in the past.
“There are a variety of mechanisms in which a woman experiences brain injuries in a domestic situation, many more than sporting probably, and the more head injuries a woman has, the greater her chance of long-term problems,” Williams says.
This includes a higher risk dementia, PTSD, migraines, learning problems and memory problems.
“But women aren’t told this, so many don’t know that they’re at risk of these things.”
Williams says there is a ’hidden epidemic’ of women in the community with brain injuries no one knows about, who could have been diagnosed with mental health issues instead.
In 2018, Brain Injury Australia released its findings after looking at the prevalence of brain injury in victims of domestic violence.
It found that 40 per cent of victims who attended hospitals in Victoria, Australia, for domestic violence had a brain injury and the majority were women.
But there’s no specific treatment for these women, Williams says, and many won’t even know they have a brain injury.
“Abused women are a very neglected population, and when you think about the money being spent on sports, and sports players, there’s no reason we can’t look after woman as well,” Williams says.
But despite these findings, Williams says it didn’t lead to any change.
“When I found all this out, I was angry and upset,” Williams says.
She arranged to meet New South Wales’s Labour MP Anna Watson in August, and when Williams told her what she’d found, she says Watson was ‘mortified’.
“She immediately got on the phone with the office of the minister for the prevention of domestic violence, and requested a meeting as soon as possible.
In the Zoom meeting a month later, Williams went over what she had found with Mark Speakman, Attorney General and Minister for the Prevention of Domestic Violence, and outlined the obstacles facing women.
But he made no promises, and Williams said she felt he didn’t understand the urgency or gravity of the situation.
Watson then went to the media, and the story was reported on. Within a week, the government produced a statement promising to investigate the issue.
“We’ll all be watching and holding them accountable,” Williams says.
“I will be trying to follow up, I won’t let it go.”
Williams is disheartened that it took media coverage to get the government to respond, but says she’s learnt a valuable lesson.
“Part of the reason I’ve spoken to the media and been vocal about it, is my experience is that when we do things quietly and ask for things politely, the government says there’s no money, despite being one of the wealthiest countries in the world. But when the voting population starts getting angry and asking what’s going on, that’s when we see an answer.
“It’s been a sad realisation for me to recognise that people don’t respond to do the right thing, they respond to winning the vote, so I will keep being as loud as possible in the media.”
Leaving brain injuries undiagnosed has significant consequences, Williams says.
“You’ve got women feeling like they’re a bit crazy, women wondering, ‘Why don’t I remember things, why have I got headaches all the time, why can’t I sleep?’
“It makes women feel worse, like something is wrong with them rather than identifying the underlying cause that we’re completely missing.
“If women are unable to work due to the physical and psychological side effects of a recurrent head injury, they need to be able to apply for NDIS funding (National Disability Insurance Agency). f they don’t know they have a brain injury they will be left to flounder – which is what is happening now.
“The vast majority of doctors don’t know about this. The medical system failing these women.”
There will be a lot to work out as support becomes available, Williams says, as some women could fear that having brain injury diagnosis could interfere with them getting custody of their children.
But, ultimately, change will benefit these women.
“All women deserve to know the truth about what’s happening to them,” she says.
“In some cases, their brain injury will be the final straw. They might think an act of violence isn’t a big deal, but if a doctor says, ‘Look how many times this has happened to you, you could end up long term brain damage’, that might be the final push that makes her take steps to leave. There’s no excuses to justify why these conversations aren’t had.”
Interview: Inside one of the world’s biggest concussion studies
Concussion is a huge concern across the US military and in sports. In 2018, 19,000 military personnel were diagnosed with a traumatic brain injury, while college athletes had an average of 10,500 concussions for past five years.
Despite the numbers, many say there’s a lack of research to inform ways that government and industry can best tackle this problem.
In response, the largest prospective concussion study was formed to fill the gaps in understanding, to see what recovery from a concussion looks like in athletes and cadets.
More than 44,000 people have since enrolled in the CARE (concussion assessment, research and education) consortium since its inception in 2014, across 30 universities and four military service academies across the US.
It has so far captured data on more than 4,300 concussions. The study is funded by the National Collegiate Athletic Association (NCAA) and the Department of Defence.
It’s believed that NCAA athletes represent the best model for what happens with concussion in the military.
Researchers involved in the study hope their findings will allow them to predict what happens to people after a concussion; information which can then help inform protocols that could become the standard for universities and the military.
Steve Broglio, associate professor at the University of Michigan’s School of Kinesiology and departments of neurology and physical medicine and rehabilitation, and one of the project’s leaders, says the initial aim was to be able to define the acute history of concussion, and see what happens to people after they have a concussion, establishing both a clinical arm and a research arm.
“In the first days of the project, we enrolled 35,000 civilian athletes and military service cadets to try to understand what was going on,” he says.
“We captured this by understanding their clinical natural history,” such as if they went to the doctor about their symptoms.
“The second arm of the project was to understand what’s going on a biological level, using genetics and biomarkers and advanced imaging, to see if recovery on a biological level reflects the medical level,” Broglio says.
In 2018, the team moved on to the second phase of the project, which was to understand the persistent and long-term effects of concussion.
“We continued to enrol people and we now have 55,000 participants. Each one receives a baseline exam when they enter institutions,” Broglio says.
“The second phase is now starting to get exit data as gradates do another evaluation to see if their concussion has had any effect on their brain functioning.
“In parallel, we’re also reaching out to people who graduated from intuitions, so they can do online evaluations to see if the long-term reflects just after they graduated, and within the first five years of gradation. The goal now is to start tracking people for their whole life to see the trajectory, and to see what percentage of people have issues,” he says.
Thanks to its findings so far, the consortium has participated in setting the concussion policy for the NCA, which outlines how concussions are managed, Broglio says.
So far, CARE has published around 60 papers relating to various findings, and Broglio says some of the consortium’s findings have had more impact than others.
In general, he says, findings that chime with a wider body of research that came to the same conclusions are more likely to help enact changes in policy because they will carry more weight.
“Some of what we’ve found doesn’t match what other people have found, some things have been consistent with other studies. When it matches, we can say, ‘Right, we need to change something’,” he says. This research is unlike any other, he says, partly because of how far-reaching it is.
“We were interested in getting a broad understanding of what’s going on across all cohorts. The very first goal is to understand the natural history of concussions, and the recovery rate of athletes and cadets participating in multiple levels and across different sports and different sexes.
“Prior to the project, most of the literature focused on male contact collision sport athletes, such as American football, maybe ice hockey and lacrosse. We have close to 50 per cent women in the study, across every NCA sport.”
These sports include basketball, baseball, ice hockey, water polo and cross country. The areas with the most reported concussions, according to the NCAA, are women’s soccer, football, ice hockey and wrestling.CARE’s most recent research, which is yet unpublished, shows that there are different recovery rates based on the sport.
“No one has ever shown this,” Broglio says.“There’s almost an identical recovery rate between men and women that hasn’t been found before, and which we didn’t anticipate. It’s largely been recorded that women take longer to recover, but when matched with equivalent sports, men and women’s recovery rates are virtually identical, which is a pretty significant finding.
“We’ve also had a series of papers looking at the cognitive performance of contact athletes relative to non-contact. They perform the same, if not better. This, he says, runs counter to the school of thought that repeated blows to the head causes chronic traumatic encephalopathy, a neurodegenerative disease which causes severe and irreparable brain damage.”
Some of those things are different to what’s been previously reported, which also opens the door for more research and conversation,” he says.
As well as research, the project is also focused on education for athletes, trainers, coaches and families.
Funding for CARE expires in one yea, and the consortium is in the process of submitting for the next five-year cycle.
“We could be around for as short as 12 months, or it could be another five years. Ideally, it would be another 50 years, so we can track participants,” he says.
“You can’t wallow – you’ve got to get on with it”
Having experienced a brain haemorrhage five years ago, 52-year-old Jane Hallard from Gloucester has had to rebuild her life. Here, she details her struggle and how she has learned to look to the future with positivity.
In the five years since my brain injury, I’ve had to come to know a whole new me.
While I look the same as I did, I’m far from being the same person.
On that day, back in 2015, when I was helping my son to clean his car, little could I have imagined what lay ahead.
There was nothing unusual about that day, I felt fine, nothing was amiss at all.
Then, without warning, I can only describe the pain as if my head was being hit by a sledge hammer. I had experienced, I later learned, a subarachnoid haemorrhage.
I was rushed to hospital, where I underwent life-saving surgery and then spent the next eight weeks recovering from the ordeal which came out of nowhere, but was to change my life more than I could ever have predicted.
The main issues I experienced, and continue to have to overcome on a daily basis, are the impact on my mental health and the brain fatigue.
Both completely unseen by others, they are hugely difficult for me and impact on my life in so many ways.
They are very hard to explain to people – I couldn’t understand what was happening to myself at first, so couldn’t really expect family and friends to.
My children, then aged 22, 21 and 15, were fantastic, and my mum was hugely supportive too – although my husband, who I had only married six weeks before my haemorrhage, decided he couldn’t cope and left.
The emotional impact of that was another big barrier to overcome.
My mental health is up and down and finding ways to manage that has been hard, particularly over the past few weeks during the COVID-19 pandemic.
That did set me back greatly, but I feel like I have picked myself up again now.
Emotions are very difficult to deal with, and I often react to things very differently to how I used to. Furthermore, the brain fatigue has a huge effect.
Often I describe this to people, and they’ll say ‘I get really tired too’, which I appreciate is them trying to understand, but they really don’t.
Whereas a person without a brain injury will go to bed and sleep, during which time their brain recovers, for me, my brain will only recover to perhaps 70 per cent of what it used to.
I often feel I’m starting a day six steps behind everyone else. I generally go to bed at 8pm, as I only have a certain amount of energy to use to get through the day, and while that gives me the best chance of feeling able to face the following day, having such an early bedtime means I have no social life.
I returned to work around eight months after my brain injury, and because I looked fine, people presumed I was back to ‘normal’, little realising I was far from the person they used to work with.
People just don’t understand. I used to print off leaflets about brain injury and its impact and leave them around the office, hoping colleagues would read them and learn a bit more about what I was living with on a daily basis, but people just don’t find time for things like that in their busy lives.
One of the most distressing parts about my whole ordeal was finding out upon discharge from hospital how little support and guidance there is out there.
When I was discharged, I was given a follow-up appointment a few weeks down the line, a couple of leaflets, and that was it.
I was left with a life-changing injury and just released back into my old life and expected to get on with it.
I had no idea what to do or where to go. My children looked online to find information, online forums and local groups for me to attend, so I could find somewhere where people genuinely understood.
My Headway branch in Gloucester was a lifeline for me. In fact, if it wasn’t for them, I don’t know where I’d be. I don’t know whether I’d be here at all.
I still upsets me thinking of people who are in the position now that I was five years ago, not being directed towards Headway or any other kind of support.
I’ve been there and now how that feels, and I strongly believe that needs to change.
Now, generally, I feel in a much better place. I’m all set to start a new job, which is a new challenge for me doing something totally different, and I can’t wait to get started.
I’ve found that you can’t wait for things to get better, and it might not get easier, but you can find ways to deal with it. I do a lot of volunteering work at a local food bank, and that puts things into perspective for me.
You can choose the way you go in life – you can sit around wallowing, or you can get on and make the best of it. That’s the attitude I have learnt to adopt and the one I’m going to live my life by from now on.
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