NR Times reports from the disorientating world of one of the lesser known post-ABI challenges.
Our vestibular system, located in the inner ear, assists with balance and tells the brain what position the body is in; if it’s upright or lying down, for instance.
Usually our eyes will turn the opposite way to our head because the vestibular system helps to keep things in focus.
After a brain injury, people can develop Benign Paroxysmal Positional Vertigo (BPPV), where the tiny crystals in the inner ear that control this mechanism become dislodged. This can cause vertigo when the head suddenly moves, which can lead to disorientation and sickness.
In some cases, the trauma to the brain can damage the ear canals and disrupt feedback to the brain, affecting a person’s hearing.
“Clients can present very tired, like they have brain fog, because the brain is working extra hard to do tasks that, before the injury, they did without thought,” says Clare Bates, a vestibular audiologist at NE1 Hear.
Early intervention is key, says Bates, as well as not being dismissive of odd symptoms people might describe. This means educating as many people as possible to recognise the symptoms to look out for so patients can be streamlined for treatment.
But vestibular problems often aren’t the first thing that comes to the mind among medical staff when looking after a patient with a head injury, says Bates.
“A lot of clients I’m working with are three years down the line before vestibular injuries are looked at. There’s a lack of education. It can take such a long time for patients to get well enough to move around enough. And then, patients often think it’s all in their heads – but it’s a real condition.
“Someone in a car accident, for example, could be laid down for months without being exposed to many movements, and it’s not until later on that they realise they’re dizzy when moving their head or trying to walk.
“With the right person picking up on symptoms, though, vestibular rehab can work an absolute dream,” adds Bates.
For Lisa Robinson, allied health psychotherapist at Newcastle Upon Tyne Hospitals NHS Foundation Trust’s major trauma unit, this means educating healthcare professionals, so that, rather than thinking dizziness is just a part of having an injury, they delve deeper, asking a few more questions and doing more assessments for BPPV.
For many patients, dizziness is one part of several problems they experience daily. But it can be a barrier to the rest of their rehab.
“If we treat it, it means they can then get on with their rehab,” Robinson says.
One form of treatment is the Epley manoeuvre, which helps crystals in the inner ear get back to where they should be and involves turning the head and lying down. It can be done in less than five minutes.
“Some patients, however, are nervous about doing the manoeuvre as it causes them to feel dizzy, and it’s human nature to avoid that,” Robinson says.
“Trying to encourage patients to adopt head positions when they’re experiencing dizziness can be challenging, but for a lot of patients, their dizziness is one of most troubling symptoms.
“If we reassure people that treatment will help with dizzy symptoms, most of the time they’re quite keen.”
Where it becomes more challenging, Robinson says, is when there are other injuries, such as fractures, or being prohibited by a neck collar, which means the treatment will need to be modified.
The manoeuvre can significantly reduce dizziness, but there’s a risk they can come back out again.
High functioning clients can be taught how to do the manoeuvre themselves, but outside of the hospital, there are many other ways therapists are helping patients with vestibular injuries in their everyday lives.
“Some of my clients can feel dizzy and unsteady when they look up, like they’re going to lose their balance. Loud noises can also be really disorientating for people,” says Gail Archer, clinical innovations lead and clinical lead occupational therapist at Neural Pathways.
“It can be really isolating for people. Some clients don’t want to go out to busy areas,” she says.
“One client couldn’t go to the local shopping centre because the patterned floor made her feel uneasy, and there was lots of movement around her.
“All the noises and feedback going into her visual field made her feel unsteady, like she was going to fall. She’d grab onto shelves in supermarkets.”
Public transport can be difficult, too, for someone with vestibular injuries. Even a train going past at the train station, or having to stand and walk towards a seat on the bus, can be challenging.
“People think you’re drunk – there’s a public perception because the problem is hidden,” Archer says.
“Several clients have reported that people deal with them as if they’ve been drinking; it can feel like they’re being stared at because they can walk quite staggered with their feet apart to give them
“There can also be a lot of anxiety associated with BPPV, and they can develop a fear of going into the community, which can lead to low mood.”
Graded exposure is one treatment that can improve and manage symptoms, Archer says, which can help people manage their symptoms and cope when things do happen.
“We expose the person to symptoms that make them dizzy in the hope that they will lessen over time. Graded exposure could mean progressing from standing at the train station for 15 minutes to getting the train to a busy place and sitting in a coffee shop to have a drink,” she says.
“Avoidance makes it worse – you have to do that rehab to gradually expose to symptoms and resilience to having them.
“It can be easier for higher functioning clients who are usually mobile and able to take things on independently, but carers can also help by taking people out to exercise.”
Archer says vestibular problems require a multi- disciplinary approach.
Her clients often have involvement from neuropsychology to help with mood management, and physiotherapy to help with exercises, as well as audiology to help with assessment at the nature of a patients’ vestibular problems.
Similarly, Bates sees patients from neurology, psychotherapy and cardiology, but says each patient is different.
“No one case is identical to another. I have to think outside the box and give personalised exercises, get to know clients and build a rapport with them that you don’t get in a lot of specialities.
“I wouldn’t give unrealistic expectations, but the rule of thumb is that if you have good muscles, joints and vision, in theory there’s definite potential for improvement. It’s important to give people manageable goals.”
Whatever the level of injury, it’s important that patients receive the very best treatment, rehabilitation and care as quickly as possible. Legal advice may also be vital.
Paul Brown, Associate Solicitor within the Serious Injury Team at Burnetts Solicitors, says: “Part of
the issue following vestibular injuries is that often they are not detected straight away particularly following head and brain injury.
As confirmed, vestibular symptoms can be very intrusive and often entrenched and it is only through multi-disciplinary working that these symptoms can be fully addressed.
“The first step in a legal claim is however ensuring that a full medico-legal assessment is undertaken by a consultant in audiovestibular medicine or specialist ENT Surgeon.
This should include where possible objective tests of the vestibular system to confirm the full extent of the injuries sustained.
“The symptoms can often fall into three main categories these being vestibular, brain injury and psychological related and it is only be addressing all three areas in this group of patients that sustained recovery can be achieved.
“This will normally mean that the therapy team will need to include a neurophysiotherapist with experience of treating vestibular injuries, occupational therapist, audiologist and neuropsychologist. Although depending on the extent of the brain injury other therapists may also be required.
“If symptoms are not addressed quickly the symptoms can become entrenched with many patients presenting with avoidance behaviours which can be mistaken for malingering.
“Many of my clients have been subjected to video and social media surveillance after being instructed by defendant insurers as a result. It is in my submission human nature to try and avoid something which makes you dizzy and nauseous.
“Therefore the treatments provided are intended to increase tolerance to the dizziness and nausea symptoms and attempt to reduce their overall effect on daily living. This can be a long process and whilst many experts will suggest that symptoms can be fully resolved my experience is that this is often a life-long condition which requires long term treatment, support and care to be included within any legal claim.
“Therefore where there is a legal claim having a legal team who are experienced in vestibular injuries is therefore very important and can often make the difference in obtaining appropriate treatment and support for the remainder of life.”
Cheatsheet: Vestibular problems after brain injury
Vestibular injuries can have a dramatic and life changing impact not only for the person injured but also for those that are close to them. The ability to maintain our balance and navigate ourselves in the outside world is vitally important. Head injury and whiplash injuries can often disrupt the internal vestibular system, resulting in many different problems with balance and dizziness. This in turn can have a detrimental impact on recovery in other areas. The specific conditions that can follow trauma include:
Benign Paroxysmal Positional Vertigo (BPPV)
BPPV is normally caused when the crystals of the inner ear are dislodged from their usual position and build up in the semi-circular canals, thus disturbing the usual movement of endolymph fluid. This makes people sensitive to specific kinds of movement, such as lying down or turning. Balance can also be affected when standing or walking. Episodes of BPPV will often make people feel like the room is spinning round. This can often be more pronounced during the early morning or when someone has been lying down for long periods.
Post-traumatic vertigo is sometimes used as an umbrella term for many of the conditions described below when they follow a head injury. Alternatively, it can refer to dizziness after head injury, in the absence of other more complex clinical feature.
This term refers to symptoms of hearing loss, dizziness and tinnitus which occur after head injury, but without signs of direct injury to the labyrinth.
Traumatic endolymphatic hydrops
This condition is caused by an abnormal build-up of endolymph fluid in the inner ear. The increased pressure in the inner ear leads to periods of intense dizziness. Some people have this condition due to a condition known as Ménières disease. However, it is sometimes caused by a head injury, in which case it will normally be referenced in the medical records as traumatic endolymphatic hydrops or post-traumatic Ménières disease. People with the condition will normally experience periods of intense dizziness (vertigo), along with sounds in the affected ear (tinnitus), fluctuating hearing loss, loss of balance and a feeling of pressure, or fullness, in the ear.
People who experience visual vertigo will normally complain of dizziness and unsteadiness which is triggered by busy environments with lots of visual stimulation. Symptoms include loss of balance, dizziness, sweating, fatigue, nausea, vomiting and disorientation. However people will react in different ways and this can often be linked to conditions like BPPV. Often people suffering from this condition will find it difficult to cope in crowded environments or being a passenger in a car or train. Some people often have great difficulty looking at computer screens for long periods, especially screens that have scrolling text. Visual vertigo is usually triggered by movement, which is sometimes referred to as motion sensitivity. One common trigger that has been reported is being in a busy supermarket especially where there are highly-stacked aisles.
For information about an upcoming webinar on post-brain injury vestibular problems see www.burnetts.co.uk.
Stroke survivors’ life quality greatly improved by arts – new book
Launching on World Stroke Day on 29th October, new publication Recovering Hope is the result of a decade of working with stroke survivors in hospitals and in the months following their release.
The book presents qualitative data and evidence from healthcare professionals, artists and stroke survivors into how a tailored arts intervention can assist in recovery and improve quality of life.
The book, written by Kevin Murphy, Lucinda Jarrett and Chris Rawlence from Rosetta Life, is the first output of SHAPER, the world’s largest study into the impact of arts on mental health launched by King’s College London and UCL.
The book lays out the history of the Stroke Odysseys project and explains how Rosetta Life works with stroke communities through movement, song, poetry and performance.
Alongside their methodology, evidence and testimonial is given into the therapeutic benefits of the programme.
Findings have shown that the Stroke Odysseys project can give participants a sense of being ‘free’, and researchers identified a key theme of ‘the importance of doing something new’ and ‘discovering something new about themselves’ which was rewarding and enabled people to imagine a new life after the trauma of brain injury.
Independent qualitative research and ethnographic evaluation found an increase in focus, memory, movement, and confidence, and an overall improvement in wellbeing and quality of life from participants.
The book also outlines how Stroke Odysseys complements and challenges the clinical model of rehabilitation, enabling people to progress on a personal journey of recovery and how it innovates at the junction between art making and care giving, re-connecting these related disciplines.
The Stroke Odysseys project created by Rosetta Life is one of three interventions, all of which have been proven to improve patient health, that are being trialed among larger groups of people within NHS hospitals. SHAPER – Scaling-up Health-Arts Programmes: Implementation and Effectiveness Research – was launched by King’s College London and UCL. More information about the study can be found here.
Deborah Bull, CBE (Baroness Bull) said, “Stroke Odysseys calls for us all to work together across voluntary, community, arts, health and education sectors, and government to model a compassionate community that cares for all its members – a message that could not be more important in the challenging times in which we live. Recovering Hope is an essential handbook for everyone with an interest in this field – whether clinician, artist, researcher or patient – and it will be particularly relevant to those dedicated to transforming the lives of people experiencing the effects of a stroke.”
Alongside the book launch, Rosetta Life will be streaming their 12-minute opera I Look For The Think, rehearsed and recorded over Zoom with sixty stroke survivors, professional musicians and the Adult Community Company from Garsington Opera.
At the height of the pandemic when vulnerable members of society were shielding, a community of the UK’s most isolated and vulnerable people came together online to create the opera about love after stroke.
I Look For The Think by renowned composer Orlando Gough was based on the lived experience of participant Kim Fraser and his wife and carer, Sarah. The opera will also be shown at Royal Berkshire Hospital. A trailer can be seen here.
Rosetta Life was founded in 1997 to use arts in health innovation to change the way we perceive the elderly, frail, disabled, and those who live with life limiting illnesses. Their work with stroke communities, Stroke Odysseys, started as a song cycle developed as part of Derry, City of Culture 2013.
Since then, Rosetta Life has produced Hospital Passion Play, which was performed at the Victoria and Albert Museum in 2017, Stroke Odysseys, which premiered at The Place before touring, choreographed by Ben Duke and composed by Orlando Gough.
Orlando Gough is known for his operas, choral music, music for dance and theatre, and is a former Associate Artist at the Royal Opera House. I Look For The Think is an extension of Act 2 of Hospital Passion Play.
New neuro-rehab centre gets the go-ahead
Plans to build a new neuro-rehab centre in Southampton have finally been given the go ahead.
The new 57-bedroom neurological rehabilitation centre will be built on the old Bargain Farm site in Nursling, on the north-west side of the city.
Work on the site is due to begin in the first quarter of 2021 with the service welcoming its first residents in the summer of 2022.
The bespoke facility will include physiotherapy and medical consulting rooms together with a therapy gym fitted with rehabilitation equipment as well as lounges, dining rooms, cinema and a café bar.
The facility will also include a self-contained step-down apartment.
The service will be operated by Inspire Neurocare and will provide rehabilitation care, long-term care, respite and palliative care for people with brain and spinal injuries as well as complex neurological conditions such as Parkinson’s disease and Huntington’s disease.
The centre will also be designed with the highest safety standards in mind, in light of the COVID-19 pandemic.
Additional features include a bespoke Covid-secure visitation suite (The Family & Friends Lounge), in-built thermal imaging technology in the entrance lobby (to ensure all visitors to the home, including staff, have their temperature taken on a daily basis) and a ventilation system which ensures air in resident and day spaces is fully changed every 15 minutes.
The centre will also have hand washing and hand sanitising stations throughout for staff, residents and visitors.
The Inspire Neurocare centre is being built by Hamberley Development, the 2019 HealthInvestor Magazine Residential Care Provider of The Year.
Daniel Kay, director at Hamberley Development, said that the neurological rehabilitation centre would be a significant addition to healthcare provision in Southampton.
He said: “The Inspire Neurocare neurological rehabilitation service will be a centre of excellence that will allow us to support local NHS services and provide much-needed complex care services for local people.
“Rehabilitation services are becoming more and more advanced and so it is vital that the appropriate environment exists to deliver these life-changing services.”
Adjacent to the neurological rehabilitation centre Hamberley Development will also build a leading-edge care home for Hamberley Care Homes that will include 80 en-suite bedrooms, spacious café bistro, private dining room, hair and nail salon, activity room and bar as well as a cinema, spacious resident lounges, dining rooms and quiet lounges.
The home will also be designed with the highest safety standards in mind, in light of the COVID-19 pandemic.
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.”
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