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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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How mental health impacts physical rehabilitation

Breakthrough Case Management discuss how a client’s physical rehabilitation is inextricably linked with their mental wellbeing

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Mental health issues are all too common, with the numbers of people impacted by mental ill health rising significantly, particularly as the effects of the pandemic continue to be realised. 

And while the true extent of such problems is probably yet to be fully understood, research is continually uncovering the power of the connection between the body and mind. 

For those of us working with individuals who have experienced a life changing injury, the impact of mental health on physical rehabilitation is clear to see – in both positive and negative ways. 

With around one in four people in the UK experiencing a mental health problem every year, it’s possible that someone living with life-changing injury faced mental health challenges before their accident – which only amplifies the situation they now face.  

But even if someone has no pre-existing mental health concerns, such injury will most probably adversely affect their wellbeing. 

This can manifest in feelings of overwhelming distress, confusion, anger, fear, hopelessness, anxiety and depression or the development of phobias, panic disorder, catastrophisation or post-traumatic stress disorder (PTSD).

Awareness of mental health and its implications is vital knowledge for any case manager. Because of the close connection between the health of the body and mind, and the potential for mental struggles to impact on physical recovery, mental health support is an important element of nearly all our rehabilitation programmes.

From a Breakthrough Case Management perspective, our rehabilitation programmes will almost always bring in a qualified psychologist. We understand the impact mental turmoil can have on a client, and we work with a team of psychologists who we match with a client depending on their requirements and their injury or situation.

Mental health support should always be considered as part of a holistic approach to rehabilitation, so we work collaboratively with the entire multi-disciplinary team, to understand the challenges our clients are facing and deliver the support they need to move beyond them. 

There is so much going on for someone who has experienced a life changing injury, which might include anything from sleep problems and financial difficulties to relationship issues. We understand that when we ask someone to be motivated and push themselves physically, it’s going to be even harder if they aren’t feeling well mentally.

But while many people struggle badly with significant mental health issues, the situation can vary greatly from person to person. It doesn’t need to be a mental health crisis or severe depression to require attention and action, the symptoms can be less severe. 

Feeling overwhelmed and fearful is common after a traumatic injury, which can lead to lower motivation, reduced engagement or a wish to isolate. All of these factors can cause great distress to a person (and their family), which can also delay or impact the success of physical rehabilitation.

We see clients who sometimes feel the effort required may not be worth it. This might be because the gains don’t seem big enough, the status quo feels more comfortable, or they are frightened they will injure themselves further. 

They can withdraw, feel helpless and become anxious – but staying in that place limits potential. We’re here to help our clients take back control and look towards a more positive future.

So, what can we do when a client is struggling to cope with their mental health? The psychologist’s role in the multi-disciplinary team is vital, to identify the problem and develop a plan to address it. But every member of the team needs to be involved if a client is going to reach their goals, whether that’s getting themselves out of bed in the morning or walking a mile.

At Breakthrough, our case managers work with each client as an individual to find out exactly what they need to reach their goals and then bring together the best possible team to support them. 

This might involve a personal trainer, occupational therapist, neuro-physiotherapist, vocational therapist and psychologist for example. They will also identify any other issues that might be interacting to affect ongoing rehabilitation – such as sleep, appetite or medication – and organise professional, practical or financial help to address them.

Even before establishing a team, the starting point is to set realistic SMART goals broken down into achievable milestones, which a client can get behind and truly believe they are able to achieve. 

These goals must be backed up by trust – in the case manager, team and whole rehabilitation process. Developing this trust starts from the very first time we meet a client, where we start to build their confidence in our professional expertise and experience.

When someone has been traumatised, rehabilitation can take a long time and it is, of course, not always easy. But with a plan and the right support it is possible to overcome obstacles that might have previously felt insurmountable.

The more people push themselves forward and see the benefits of the work they put in, the more resilient they become.

A positive attitude is also important. At Breakthrough Case Management, we are naturally optimistic, and this positivity, alongside our tenacity, supports our clients. 

We won’t ever give people false hope – we never promise that everything is going to be all right when it isn’t. But what we will always do is work together to find out what is possible, set realistic goals and make the most of a client’s potential to reach those goals.

Through our own experience, we know the physical, mental and practical challenges our clients face are inextricably linked. 

We know we can support their mental health, and in turn physical rehabilitation, by taking some of the anxiety away. 

This might be something as simple as organising payment of bills or sorting out basic house maintenance, and while these practicalities are peripheral to the main problem, they are often the straw that breaks the camel’s back.

We are here to help and ensure our clients feel cared for physically and mentally, because effective physical rehabilitation isn’t possible without good mental health support.

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Are we neurological time travellers?

Lisa Beaumont looks at the similarities between young stroke survivors and people living with Young Onset Parkinson’s Disease

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Advocating for Neuro ProActive has provided many introductions to numerous neuro visionaries.

For example, my response to a recent LinkedIn message from the national charity Spotlight YOPD, representing those with Young Onset Parkinson’s, saw CEO Gaynor Edwards pop in for a socially distanced cuppa. She brought fellow YOPDer and former neuroscientist Dr Jon Stamford with her. 

Therefore, since I am always keen to talk to the best brains in the sector I was happy to host – they brought cake to make the meeting all the sweeter. Rapidly, I discovered that young ‘strokies’ and young ‘Parkies’ have a lot in common – the conversation was easy and animated.

In both cases we were living with conditions more commonly associated with the elderly than those in midlife – as the three of us are.

Sitting round the kitchen table we all had hope – and a belief that as advocates for our conditions we could and would make a difference. As the generation of personal computers and mobile phones, we will probably be using AI to make some of that difference. Three smartphones sat alongside the mugs of tea and cake plates on the table. 

Health technology apps like Neuro ProActive in the hands of the right people – those impacted neurologically – is a potential game changer. 

I was  fascinated to hear from them about how much they feel an affinity with young stroke survivors, like me.

Three reasons for affinity between stroke survivors and YOPD 

1. We defy expectations

Most importantly, both groups, ‘Strokies’ and ‘Parkies’ face a shared challenge in that our conditions are popularly associated with elderly patients not mid-life people, like us.

2. Digitally capable

Thanks to our relative youthfulness, we are a tech savvy patient community and have the confidence to ask questions and demand attention from medics and peers.

Both our charities, West Kent Different Strokes Peer Support Group and Spotlight YOPD are so excited about the roll-out of Neuro ProActive nationally and internationally.  We both support cohorts of  young patients who will welcome the opportunity to have some agency in their treatment programme by being empowered to self-manage their condition digitally.

3. Multi-disciplinary teams

Despite the clear difference between stroke rehab’s management of rehabilitation and YOPD’s need to manage its degenerative symptoms, both groups share the need of input from a range of AHPs.  

Access to neuroproactive.com will give us an easy platform to reach those practitioners with whom we will be able to communicate, record progress and set goals in one place.

The identification of these three similarities between stroke survivors and YOPD reminded me of this quotation from Shakespeare: “Misery acquaints a man with strange bed-fellows”.( Tempest Act 2, scene ii).

Neither group feels miserable. By contrast, we feel excited. We are happy to promote the possibilities for improved care for our conditions in future.

I have discovered a new empathy for those who are diagnosed with Young Onset Parkinson’s Disease, and those who remain undiagnosed. It is significant that reliable data is hard to find for this condition.

It is a game-changer for Neuro ProActive that Ian Pearce tweeted  news in December 2021:

Delighted to announce that, following a public tender, ⁦@NeuroProActive⁩ will be adopted by the South Wales Trauma Network. This will involve integration with EPRs and an independent research study on 500+ patients funded by The World Economic Forum. 

Value Based Healthcare Wales. Likewise the news of its adoption by Leeds Children’s Hospital. 

More patients and data will deliver better outcomes for all neurological conditions, which like Shakespeare’s themes can apply to any age. Strokies and Parkies feel old and young simultaneously.

Therefore, we feel like time-travellers.

You can get your own glimpse of the future by visiting www.NeuroProActive.com

And follow @neuroproactive on Twitter for the latest news.

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The desire for discharge home

Renovo Care Group share a case study of delivering the rehabilitation and goals to help achieve the return home

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One of the most common patient goals we work towards in acute neurorehabilitation is often the one to be discharged home or to an alternative placement.

We recently had a patient admitted for a six-week assessment period to determine whether an escalation of distress was psychologically driven, neurologically driven or a mixture of the two. To give a bit of context to this situation, this gentleman had cerebral metastasis in his right frontal lobe secondary to lung cancer and had been sectioned several times over the past year due to risky behaviours towards self and others. Whilst he had a few goals that he wanted to achieve during his time with us, the main one was to go home to his family after rehabilitation.

Given that we had a short assessment period, the first question we asked ourselves was how were we going to work with him to achieve his goal?

Upon his inpatient admission, the gentleman was seen twice a week by physiotherapy and two to three times a week by neuropsychology for assessment. Physiotherapists and neuropsychologists are guided by evidence-based practice in their professions and use their knowledge from practice to develop the evidence.

After understanding the cause of an injury, they work to ease physical and psychological symptoms using a variety of techniques. Assessments using outcome measures and formulations are conducted to gain a holistic view to help to determine the best course of treatment for a patient. 

The main goal of physiotherapy sessions for this individual was to improve his endurance, strength, and participation in activities that he enjoyed. He was measured for his upper/lower limb strength using the Oxford scale. ROM (Range of Motion) and MAS (Modified Ashworth Scale) were also used to identity that he had a normal passive and active range of motion over all joints, and no muscle spasms were evident.

Finally, we assessed using the Berg Balance Scale, which is an objective way of determining how well a patient can safely balance during a series of predetermined tasks. He scored 55/56 which indicated a low risk of falls.

Initially the main goal of neuropsychology was to assess the gentleman’s cognition, behaviour, and emotions to hypothesis whether the distress he displayed was neurologically driven.

Maja Kreninger, physiotherapy assistant

Whilst he was previously screened using a brief cognitive test several years earlier, there did not appear to be a reassessment since the cerebral metastasis diagnosis. Therefore a comprehensive baseline to measure any further changes was required.

During inpatient sessions, the gentleman completed a battery of psychometric assessments to measure his current level of cognition. This included a test of premorbid functioning to find out an estimate for intellectual level before diagnosis, a current level of cognitive functioning (after diagnosis), language, attention, memory, and executive functions (higher-level thinking skills such as planning, cognitive flexibility, decision-making etc).

His behaviour and emotions were tracked over time using a mood/ behaviour diary filled out by ward staff. Mood and quality of life measures were also completed.

Our second question then became, how ethical is it to just provide an assessment when an intervention may also prove effective?

The simple answer is that it is not ethical. What is the point of putting a person through intensive assessment that may evoke anxiety or frustration if you aren’t going to provide them with the tools or strategies to support the areas of difficulty? It was obvious that this individual wanted to go home after his assessment period, but it was likely that he would still benefit from having neuropsychology and physiotherapy input.

The model we jointly decided on with him was for him to come in as an outpatient one day per week. With input from his family, he concluded that Wednesdays were a good day for him to travel to the hospital, engage in his sessions and travel back home. That way his preference of living at home and receiving neurorehabilitation could be adhered to.

Initially he was scheduled in for two neuropsychology sessions and one physiotherapy session with rest breaks in between. However, it became apparent after the first outpatient appointment that he was unable to cope with the high cognitive and physical demands placed on him in his sessions and catching the bus all in one day.

In order to manage his fatigue levels neuropsychology sessions would reduce to once a week to and the number of weeks that he would be an outpatient would be extended to ensure that he received the intervention required. 

As part of the physiotherapy intervention, the gentleman commenced a personalised strength training program using multiple gym machines. He was given a booklet with details about the exercises, correct methods, resistance, and repetitions so that he could access the gym on his own.

Joint sessions with Occupational Therapy were completed to ensure he could access the community, and exercises helped increase aerobic tolerance. This proved to be successful as he was able to independently go into town to complete activities of daily living, e.g., buying presents, going to the hairdressers etc.

As fatigue was one of the challenges encountered during sessions, physiotherapy focused on gradually increasing the amount of activity completed in a graded, flexible way that was monitored continuously. 

Similarly, neuropsychology also created an individualised intervention to help build his awareness into his brain injury. The intervention consisted of six sessions to improve knowledge of the structure and function of the brain, neuroplasticity, fatigue, and cognitive and emotional changes after brain tumour.

The sessions highlighted strengths and weaknesses of his cognitive, behavioural and emotional profile providing feedback from the neuropsychological assessments. It also included strategies which could be implemented to support the gentleman at home. He was given his

Ellie Knight, assistant psychologist

own folder with all of the session information to use as a memory aid and to share with family. 

Over time, he began to recognise his limitations in relation to fatigue and understood that he could take breaks, complete tasks when he was less tired and show self-compassion.

He reported that his brain injury awareness improved, and he felt much steadier on his feet. He started to engage in community activities such as going to the cinema and regularly walking near his home. After seven weeks as an outpatient the gentleman was discharged from our neurorehabilitation service – his main goal achieved. 

Upon reflection, the first step of his rehabilitation was setting SMART (specific, measurable, attainable, realistic, and time-related) goals that were tailored to his needs and wishes. This improved his motivation and confidence to participate in sessions knowing that we were all working with him to achieve discharge home.

Developing a sense of strength is a personal journey for every patient, whether it is physical, mental or in an everyday setting. As rehabilitation practitioners it should be our duty to assist them in this journey which will lead to improving their wellbeing and quality of life.

  • Written by Maja Kreninger (physiotherapy assistant) and Ellie Knight (assistant psychologist) of Renovo Care Group

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