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“It’s a really, really lonely place to be…”

Up to a third of women, and one in four men, will experience violence at the hands of a partner at some point in their lives. A black eye may be hard to hide, but a traumatic brain injury could remain undetected indefinitely, as Sarah Sinclair reports.

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Paula Walters was strangled by her boyfriend in 2006.

“I remember him putting his hands around my throat and thinking, ‘I’m going to die’.”

For years afterwards she kept forgetting things, struggling to concentrate and losing control of her emotions.

At her lowest point, she even tried to take her own life. What Paula didn’t know, was that her symptoms were not because she was “crazy” or “stupid”.

They were the result of a brain injury sustained in the strangulation.

Paula survived, thanks to a neighbour who found her severely beaten and took her to hospital. But neither she nor the medics thought to consider the possibility of a brain injury at the time.

It wasn’t until an MRI scan after a car crash in 2017 revealed the extent of the problem, that the connection was made.

Even now, Paula battles with the symptoms caused by the damage done that night. “It’s a really, really lonely place to be,” she says.

But Paula is not alone. In the first community- based study of its kind, researchers in Ohio found that 81 per cent of domestic violence survivors reported being hit on the head.

More than 50 per cent were hit so repeatedly that they couldn’t remember exactly how many times.

Meanwhile, 83 per cent said they had been choked or strangled.

Many are likely to have experienced both repetitive head injuries and strangulation, a deadly combination that could lead to memory loss, difficulty understanding, loss of motivation, anxiety and problems with vision and hearing.

The research indicates that high numbers of domestic violence survivors are living with undiagnosed, unrecognised brain injuries.

And no one yet knows what this could mean for them in the long term.

“Although we know it’s very common that domestic violence survivors experience blows to the head, neck and face, we were not expecting to see the numbers that we did,” says Julianna Nemeth, assistant professor of health behaviour and health promotion at Ohio State University, and lead researcher on the study.

“It’s not just that most survivors accessing services have had exposures that can lead to brain injury, but the number of times they reported it.”

While previous research has linked brain injury to domestic violence, this is the first study to gather such detailed information from the field.

Researchers interviewed female survivors not only from shelters but those accessing a wide range of community services.

Like Paula, many in the study had been experiencing lasting physical and mental health problems as a result of their experience, but had never considered that it could be a brain injury.

Instead they were blaming the abuse, and in many cases, themselves.

“People that we’ve talked to struggle with ongoing mental health issues, suicide ideation, substance use and physical health issues, such as concentration and issues with vision, hearing and balance,” says Nemeth.

“Many survivors were ascribing those symptoms to the abuse or trauma, but not recognising that it could be a brain injury, and not because they are crazy, because their abuser has told them that.

“Just putting symptoms in front of people, and providing the information that these symptoms have to do with a brain injury, gave some survivors a sense of relief.”

Dr Eve Valera an assistant professor in psychiatry at Harvard Medical School, published one of the first studies examining the prevalence of intimate partner violence (IPV) related to traumatic brain injury (TBI) in 2003.

She first became interested in the link when working in a women’s shelter while at university, but at that point there wasn’t a single piece of literature on the subject.

Valera interviewed 99 women, from shelters and the community, and found that around three quarters had sustained at least one mild TBI from their partners, and half had sustained repetitive brain injuries.

The number of brain injuries and severity was also negatively associated with measures of memory, learning, and cognitive flexibility in the women, and these women were much more likely to experience higher rates of depression, anxiety, post traumatic stress disorder (PTSD) and general distress.

“One in three women will experience at least some physical or sexual IPV after the age of 15, and if you look at the numbers that I have, you’re talking about millions of women walking around with undiagnosed, unrecognised repetitive head injuries,” she says.

“These are our daughters, our mothers, our friends, our colleagues, our partners. Everybody knows somebody who has experienced this, it’s virtually impossible not to – even if they may not tell you.”

Valera is now working on a larger study, partly replicating those which have examined concussions in athletes, in order to explore the potential long-term consequences of these injuries for women, and how they might contribute to ageing and the development of neurodegenerative diseases, as seen
in those suffering from chronic traumatic encephalopathy (CTE).

She hopes to bridge the gap between the lack of research on the topic compared with that on concussion in men.

“It’s an international public health epidemic,” she says.

“If you think of the numbers, it’s far more than athletes, far more than in the military. We have all these resources and studies on male athletes and there’s nothing like that with respect to women experiencing IPV.

“We’ve not even scratched the surface, but we do know enough to know that this is dangerous and we need to find out exactly how it’s affecting women in the long term.”

Valera has seen women in their 40s and 50s with histories of repetitive head injuries, who are now struggling to remember how to spell certain words, or help their children with their homework.

“It could be that huge swathes of the population worldwide have been negatively affected in their older years because they sustained years of abuse to the head,” she adds.

But while the long-term impact remains uncertain for now, the immediate dangers are far more clear-cut.

“People with concussions can’t process information as well, and the idea that they can navigate a potentially dangerous situation drops significantly if you’re dealing with a concussion on top of everything,” says Valera.

The complexity of their situations also means that someone sustaining a concussion as a result of IPV, is less likely to make a good recovery.

According to Valera, not recognising or addressing the potential brain injury or concussion means they are unlikely to seek immediate medical care or take a break from their daily activities, both of which are vital for making a full recovery.

Other factors such as being under acute stress, injuries elsewhere on the body and sustaining repeated concussions with relative frequency without giving injuries time to heal, are not conducive to optimum recovery.

“If they do go to the ER, it’s likely for a broken bone or blood coming from somewhere.

“There’s a disjoint between what people are learning in sports or military data, where we see most repetitive head injury studies, and what a woman may think is going on with her.”

The symptoms are not being recognised by those who are in a position to help survivors either.

Data suggests that frontline staff anticipate the number of women with a concussion coming into their care as far lower than the number actually is, and many don’t feel comfortable addressing brain injury with their clients.

“We really need to start understanding this better and getting this information out there to women, and all the different stakeholders who interact with these women.

“If you don’t realise they’ve got a brain injury you’re going to see them in a very different light.

“We need to be approaching women that have been in this situation with the idea that they may have sustained a concussion and factor that into how we care for them.”

The Ohio study interviewed 62 staff members from five agencies across the state and, according to researchers, professionals such as advocates, healthcare providers and law enforcement personnel are not considering that the individual they are dealing with could be behaving a certain way because they are suffering from a brain injury.

“Advocates absolutely want to help the survivors that are coming into their services, but we haven’t made the link yet as a service community between the potential for brain injury and the symptoms we’re seeing in front of us,” says Nemeth.

“We assume that the symptoms we see are because of psychological trauma or potentially mental health or other substance use issues.”

In direct response to the study’s findings, the Ohio Domestic Violence Network has developed the CARE (Connect, Acknowledge, Respond and Evaluate) model, an intervention tool which provides free resources to survivors and service providers to help them identify when someone may have a brain injury and how to respond appropriately to get them the care they need.

The next steps involve developing protocols for all services that come into contact with survivors, to ensure that brain injury is always put on the table as a possibility.

“We need to rule out brain injury instead of ruling it in,” adds Nemeth.

Elsewhere in the US, PINK Concussions, the first ever non-profit organisation for women and girls with brain injuries, is also working with women’s shelters to try to increase awareness among frontline staff.

Founder Katherine Price Snedaker (pictured above) says: “The shelters that we’ve spoken to have been overwhelmed, but what we say is that we don’t need you to diagnose brain injury, we just need you to be aware of it in the same way that we ask sports coaches and parents to be aware of brain injuries.

“I don’t think it’s anything that workers aren’t already dealing with. It’s the reason clients aren’t showing up to appointments on time, that they are cranky or irritable, or they don’t have all the details.

“You may see them as non-functioning and irritable people, but if you see them as someone with a brain injury that might allow you more patience and understanding.”

A brain injury could also be the reason that a survivors’ story is inconsistent, or that they may appear to be under the influence of drugs or alcohol.

This is something which Valera tries to convey to police officers dealing with domestic disputes.

“How someone looks after they’ve sustained a brain injury is a lot like someone who’s intoxicated.

“They may be dizzy, disorientated, vomiting or seem confused and may not remember.

“Yes, often there are drugs and alcohol involved, but that doesn’t mean it’s the culprit for what you’re seeing there.”

It’s like a lightbulb moment, Valera says, when people realise what is really going on.

But how has something so obvious gone under the radar for so long?

A general lack of understanding of IPV, combined with the stigma that survivors face, means it is often easier for everyone to keep the problem hidden.

“IPV is so stigmatising that individuals don’t want to admit to it,” says Valera. “There’s so much victim-blaming and misogyny involved, that it’s not easy to own it and say ‘that happened to me’.”

Especially as so often when a woman does speak out, she is faced with the question: Why doesn’t she just leave?

Approximately three quarters of intimate partner murders occur while a woman is attempting to leave, or after they have left.

“It’s not a silly belief that a woman may actually be killed for leaving,” says Valera.

And it’s even more difficult to speak up for those women who are further marginalised in society.

“Women are already fighting the stigma of domestic violence and trauma, and brain injury is an invisible illness, so you have invisible people with invisible injuries,” says Price Snedaker.

“And if they are a woman of colour or there’s a language barrier – all these barriers stack up. We have very few women of colour that come forward. That’s a group that we really need to reach out to more.”

IPV is a topic which people not only don’t understand, but don’t want to understand, she says.

“No one likes to think about it and people don’t necessarily think women are worth it.

“People have an impression that it’s just a problem for other people – those in the ghettos, the drug addicts and the poor people – but it absolutely diversifies all socioeconomic classes.”

Paula Walters actually worked with trauma victims in the same hospital where she was treated, yet the true extent of her injuries still went unrecognised.

“As much as I know about trauma, I totally missed the strangulation part of the brain and the effects that it has had on my body,” she says.

“My friends and family have watched me try to end my own life. That all could have been avoided if the right people had had the right knowledge.”

In order to make it part of the public conversation we need to get comfortable being uncomfortable, says Valera.

“[Women] are being dragged down the street, thrown out of cars, having refrigerators thrown on them, their head stamped on with work boots, smashed against cement floors, or hit with a baseball bat.

“We need to start talking about IPV as if it’s not this horrible disease or crime. It’s something that is happening to women all over the place.

“We can’t just keep looking the other way or saying it’s their fault.”


Why men injured in domestic violence must be encouraged to speak out too

The studies cited in our domestic violence report are focused entirely on female victims of intimate partner violence.

However, men, of course, may also suffer brain injury at the hands of their partner or a family member at home.

The latest figures from the Crime Survey for England and Wales for the year March 2018, show an estimated two million adults aged 16 to 59 years reported domestic abuse during the period.

Of those, 695,000 were men. The real figure for both genders is thought to be much higher. Stigma, fear of retaliation and lack of trust in the police are among the deterrents to reporting such incidents, say researchers at University of South Wales (USW) who run the Compass programme, which helps men to consider themselves as victims, challenging gender stereotypes.

The US body, the National Coalition Against Domestic Violence (NCADV), meanwhile, estimates that one in four men have experienced some form of physical violence by an intimate partner, compared to one in three women.

This gap widens, however, when the severity of the attacks is measured. While one in seven women have been injured by an intimate partner, this falls to one in 25 among men, NCADV says.

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Brain injury

‘Don’t count the days, make the days count’

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In our latest interview with the Brain Injury team at St Andrew’s Healthcare, we meet Dr Lorraine Childs, a Consultant Clinical Psychologist on Rose ward, one of only three secure neurobehavioural units in the country.

Dr Childs and the team on Rose use a neurobehavioural approach that supports people who have a forensic background to re-learn skills that have been impacted by their brain injury.

As she explains: “Unfortunately, brain injury can result in an increase in aggression, so we do a lot of work to identify what a patient’s goals are and help them to achieve their aspirations in pro-social ways that preclude the use of aggression.”

Co-production between patients and the clinical team has led to the development of programmes such as ‘Better Lives’, used to encourage people to take an active role in decisions about their care. These type of approaches are transferable across all settings where people are receiving support and rehabilitation following a brain injury.

We spoke to Lorraine to find out more.

What is your experience in mental health? 

I have worked in mental health for over 25 years. I have worked across the UK including St Andrew’s, Broadmoor, Rampton and in New Zealand.

I specialise in Forensic Brain Injury. I used to specialise in LD but became very interested in the etiology of learning disabilities and people who had ABI from an early age.

Dr Lorraine Childs

What are the challenges in your role? 

People who have a brain injury and require secure care tend to benefit from consistent, structured treatment.

Many of our patients are negatively affected by change and inconsistency. Working with large groups of staff can make it difficult to keep things consistent and this has been especially pronounced during the pandemic. I try to counter this by keeping things simple and comprehensive.

What do you most enjoy about your role? 

Working with a team of staff and patients. Creating things together, that are meaningful and purposeful. 

On Rose we have a really good structured neurobehavioral programme, developed by staff and patients, which works at both a group and individual level.

Describe the service you work in and some of the approaches that you use.

Rose is a medium secure neurobehavioral ward for people who have forensic backgrounds. Unfortunately, aggression is one of the things which can accompany brain injury and this is why some people need secure care to keep them safe.

We work with a neurobehavioural paradigm, helping people to learn new skills or relearn skills that have been affected by brain injury. We give patients opportunities through extensive vocational options and a range of therapies. 

Our ‘Better Lives’ programme provides people with opportunities to learn life skills. Patients really understand that they are here as part of their journey to achieve a better life.

In fact, our ward icon and motto is Muhammad Ali and his quote; ‘Don’t count the days, Make the days count’. In other words, the patients can influence their own future every day.

Co-production is key to this programme. For example, as a result of ‘Better Lives’ sessions we have co-produced a ward clinical treatment philosophy, a healthy-living programme and an information leaflet for newcomers. Patients requested for this to include information about timetables, events, contacting family and there is a poem written by a patient about their experience of moving here. Feedback about this is positive, one new patient said “it is informative and puts the mind at ease”. 

We encourage patients to take an active role in decisions about their own care, especially via Positive Behavioural Support Plans and utilising feedback. Increasing involvement encourages ownership and responsibility, even within a necessarily restrictive setting, and can help equip patients for their future in settings of lower security and community.

Describe a typical patient presentation.

There is a very diverse group of patients on Rose ward. Ages range from late teens to 60s. If I had to describe a ‘typical’ patient it would be a male in his 40s who had a brain injury in his 20s, usually because of a road traffic accident or substance related, leading to a loss of functioning, cognition, social and physical abilities. 

Most people who come to Rose have spent up to 10 years in standard psychiatric inpatient units and often well over a year in prisons. In fact, 100 per cent have been in psychiatric units and 70 per cent in prisons but only 16 per cent have had any psychological or neurorehabilitation.

So for many, St Andrew’s is the first time they have had some treatment support for their brain injury needs. 

What is the difference between Rose ward and a general neurorehabilitation ward: 

Rose is very unique due to the forensic aspect of the ward. Rose specialises in working with people with high levels of aggression and working with people to help them to find alternative ways to express themselves and achieve goals.

What are the main interventions used: 

Our key intervention is the neurorehabilitation programme. This aims to assist patients in compensating for the deficits they have in communication, volition and motivation, by providing a scaffold structure where they can safely develop skills required for daily life that are lost because of their brain injury or lack of opportunities in early life.

We also do a lot of health promotion and healthy living work on Rose and have presented at conferences and won awards for our work. I think lockdown had a negative impact on most of our waistlines and so we have an opportunity for staff and patients to work together to improve our diet and wellbeing.

What sets St Andrew’s apart:

St Andrew’s provides a clear and structured pathway for neurorehabilitation patients, with evidence-based success for patient outcomes.

This shows how patients progress in terms of increased levels of cognition, social skills, reduced levels of aggression, and increased levels of leave within the community.

Most importantly however, the patients have the opportunity to move towards their life goals. 50 per cent of patients from our Medium Secure Unit go straight to community rehabilitation. Most others advance to low secure. All go closer to home. This is what we are here to do. We do it well and help to shape Better Lives.

St Andrew’s Neuropsychiatric service provides specialist pathways for brain injury, dementia and Huntington’s disease across secure, non-secure and step-down settings. To find out more visit the website HERE

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Insight

The Importance of Being Earnest in Transitional Services

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Throughout childhood there is one team which deals with everything that the patient would need. As the children continue to grow, we wonder what will happen to them when they are too old to be cared for by the same team. So, what do we do with young patients who have been cared for very intimately by the paediatricians?

When they become adults, they could potentially find themselves thrown into a whole new world of healthcare which is not as homely, or as individualistic, as they would have experienced in the children’s services?

This particular demographic of patients faces plenty of challenges when transitioning to the complexity of adult life and, subsequently, adult responsibilities. Those individuals with complex physical and psychological health needs have additional difficulties in the road to transition. These needs would previously have been met by the same handful of individuals but, as they transition to the adult healthcare system, they will find themselves being transferred around multiple departments to provide them with the specialist care they require. 

The introduction of transitional processes should probably start early around the ages of 12 to 14 to allow for a period of discussion and acclimatisation to ensure greater confidence in services by the ages of 16 to 18. The time required depends entirely on the individual and the complexity of care required. Some young people can transfer almost immediately to adult services whereas others require years of transition to ensure the optimal manner of transfer.

Dr Jonathan Mamo

The process and team working on providing transitional services will differ from place to place. There will be qualified individuals responsible for ensuring the transition is as complete and as comprehensive as possible. There is no one definite system but each one works towards a common goal of providing a smooth and seamless “handover” of care from the Paediatrics team to Adult Health services.

All young people going through a process of transition should be provided with a written transition plan which would summarise and outline the key phases of the transition process. This should also have the names of the persons responsible for the specific aspects of the ongoing care needs. Should anyone not be sure of the process they are going through there will always be a main point of contact for clarification and explanation. 

Some services will provide site and process visits to allow young people to experience the travel to a service and the site of the service itself. In some situations, depending on availability, they may be able to meet with some of the teams who may be providing them with care in the future. 

Other aspects potentially covered could include medication as the young adult may be required to take on responsibilities including self-administration of medicines and treatments just as they would need to take on responsibilities in other areas of their lives.

The transition teams will also involve the parents or responsible adults in the transitional process as it would also take time for these responsible individuals to get to grips with the process of “letting go” of aspects of care which would previously have been their responsibilities.

The ultimate goal of any transition service is to ensure that the young person has all the skills and contacts available to ensure comfort and confidence in their transfer to adult health care services. This will feel somewhat like being “thrown” into a great unknown at time for all involved. The CQC had published a document with overviews and case studies of previous transition patients which is definitely worth a read by anyone going through this same process.

Just as the healthcare service plans to discuss transition early on, it would be ideal if families could have similar discussions at home around common themes such as;

  1. Learning the names and methods of taking medication, how much to take and asking the reason for taking the medication
  2. Seeing Health Care Professionals on their own for all or part of their clinic reviews
  3. Staying at hospital overnight on their own
  4. Monitoring hospital appointments
  5. Any questions around current and future healthcare needs
  6. How their condition may have impacts upon their lives in the future such as, for example, direct impacts on career, relationships, and intimacy.

It is essential that all people involved in the care of the young person, including the young person, should continue to ask questions around their care and to raise concerns with the relevant adult teams to ensure the best care going forward.

  • Dr Jonathan Mamo is a Consultant in Neurorehabilitation at Renovo Care South Newton. He is  also the Clinical Lead and Consultant for the Royal Berkshire Hospitals NHS Foundation Trust, Training Program Director for Health Education England Thames Valley and Clinical Panel Member for the Individual Funding Request Board for NHSE.

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Insight

‘Better psychological support needed for frontline healthcare workers’

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Frontline healthcare workers need a range of ‘flexible’, ‘easily accessible’ and ‘consistent’ psychological support to overcome the significant mental health burden resulting from the COVID-19 pandemic. 

A team of psychiatrists and psychologists, who formed the Covid Trauma Response Working Group, say there needs to be an increase in mental health awareness training for all staff in health and social care settings, supported by more assertive outreach to identify those most in need.

In addition, more sustained funding is needed for psychological support services – not just during crises – and equity of access to support needs to be ensured between different teams, services and localities, across the entire health and social care sector.

Dr Jo Billings, associate professor at UCL Division of Psychiatry, who led the study, said: “In the UK, it has been estimated that 45 to 58 per cent of the frontline health and social care workforce met criteria for clinically significant levels of anxiety, depression and/or PTSD shortly following the first wave of the pandemic.

“This is amongst a workforce already under considerable strain pre-COVID-19, as evidenced by the growing incidence of stress, burnout, depression, drug and alcohol dependence and suicide across all groups of health professionals, worldwide.

“The need to support the mental health of frontline staff during Covid-19 has been recognised, however this pandemic has also highlighted a paucity of research on the mental health needs of frontline health and social care workers, and a lack of evidence-based guidance about what psychosocial support might be most effective in helping them.”

For the in-depth qualitative interview study, 25 frontline staff (17 female, eight male) from a range of professions, services and localities – but who all worked directly with Covid-19 patients – were interviewed between June 1st and July 23rd, 2020.

Health and social care workers were asked to describe their experiences and views about psychosocial support during the pandemic.

Support from psychological services, when available, was largely valued, and those who had accessed them, or knew others who had, spoke positively about them. However, there appeared to be large disparities in what was available and significant barriers to access.

Many described service provision as confusing and poorly communicated, leading to a lack of awareness about services available. It was also described as inflexible with some services only available Monday to Friday in working hours, which did not correspond to the shift patterns that most staff worked during the pandemic. 

Further, many said they were too busy to access support services during the available times.

The interviews revealed there were ‘striking inconsistencies’ in the provision of mental health support across healthcare services, noted by those who moved between locations and specialties. 

There were particular barriers to access for staff who were not employed by the NHS, restricting access to many NHS based services for social care staff and agency staff not on NHS contracts.

Participants also referenced an ongoing reluctance and stigma, summed up by Nathan, a junior doctor: “The problem with healthcare is that mental health is slightly stigmatised in healthcare workers and people don’t want to admit that there is a problem…they stress a culture of resilience and I don’t think anyone wants to be seen as being unable to cope with anything.”

Dr Billings, who is also a consultant clinical psychologist, said: “Significant steps need to be urgently taken to improve the psychological wellbeing and morale of the UK health and social care workforce and to ensure that the services they deliver to the UK population are sustainable, during the COVID-19 pandemic and beyond.

“Resources for support need to be made consistently available, and easily accessible to all staff. 

“However, systemic and cultural barriers to access need to be addressed to ensure that accessing such resources is not inadvertently stigmatising. 

“Access to resources also needs to be equitable, within different teams and localities and across the health and social care workforce.”

Other recommendations put forward by the group included staff having ‘protected time’ during work to access wellbeing and psychological services; staff who are redeployed between teams need additional support; role modelling by senior staff and culture change are needed to increase willingness to talk; and a flexible combination of peer, organisational and professional support, is most likely to be acceptable and effective.

Co-author, Dr Michael Bloomfield, UCL Division of Psychiatry and consultant NHS psychiatrist, added: “The results of this study show that a ‘one-size fits all’ approach to providing support is unlikely to be helpful. Nevertheless, these systems of support need to be coherent, consistently communicated and easily accessible.”

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