For people living with complex health conditions, this can sometimes result in them displaying behaviours which can make safely caring for them a challenge.
While many people who display behaviours of concern are able to live safely in ‘mainstream’ residential care homes or supported living, others thrive in care homes that specialise in care for people living with these complex behaviours.
One company that offers this specialist care is Exemplar Health Care. They have 35 care homes across England that provide specialist nursing care for adults living with a range of complex and high acuity needs.
Julie Booth, head of quality at Exemplar Health Care, shares how their expert teams take a person-centred approach to supporting people who display behaviours of concern, to ensure that they feel safe, cared for and understood.
What are ‘behaviours of concern’?
The term ‘behaviours of concern’ refers to behaviours that can cause harm or distress to the person doing them and/or other people around them or associated with them.
At Exemplar Health Care, we specialise in supporting people who display behaviours which have made it difficult for them to interact with others safely or effectively, such as physical or verbal aggression or offensive language. Many of them have been deemed to have behaviours that are considered ‘too complex’ for mainstream nursing and care services.
Behaviours of concern can have a range of causes, often involving damage to the brain, such as through dementia, a stroke or a brain injury, or a mental health condition.
These conditions often affect a person’s ability to regulate their behaviour and emotions, and impact how they interact with others.
People may exhibit what are considered ‘behaviours of concern’ in response to something they’re feeling, but they’re unable to understand why they feel that way or to express themselves or communicate effectively. For example, they may show the behaviour because they feel ill, uncomfortable, confused, sad, lonely or overwhelmed.
A person-centred approach to behavioural support
Care for people who display behaviours of concern should be individual to them and the challenges they face.
Our approach to behavioural support focuses on how we can prevent the need for restrictive practices and reduce the frequency and intensity of behaviours of concern, so that people can live a fulfilling life and integrate with society without their behaviour restricting what they can do.
Our trained teams work with individuals to:
- understand the reasons for their behaviour
- learn the skills to manage their own behaviour
- identify, remove and reduce any trigger factors
- implement strategies to reduce the frequency, duration and impact of incidents of behaviours of concern.
We look at psychological methods of distraction and diversion before other methods are considered.
Our care homes have high staffing levels, often 1:1 or 2:1, which enable us to work at people’s own pace and build trust.
Our homes also have in-house activities and life skills teams to enable people to take part in everyday activities that are meaningful to them and to be meaningfully occupied. This helps to reduce feelings of frustration for people who display behaviours of concern.
Every day, we all take part in activities that are meaningful to us. And this shouldn’t be any different for people who live in care homes.
Being able to take part in meaningful activities can help people to manage and express their feelings which may result in them displaying behaviours of concern.
‘Meaningful activities’ depend on what’s meaningful to that person, based on their interests, history, experiences and hobbies.
This may include everyday activities that promote a sense of worth or purpose such as choosing clothes for the day or making a cup of tea, as well as social activities, interests and hobbies.
As part of some people’s rehabilitation, we work with them to develop independent living skills such as managing money or taking a bus journey.
A big part of care involves supporting people to integrate or re-integrate with their local community. The people who live in our homes regularly go out shopping, to the cinema and for walks in the local area, as well as attend local events such as concerts and gigs, and more recently, local Christmas light displays!
We will always take a positive and proactive approach to this. If there are any risks associated with people going out of the home, we assess these and ensure that we have strategies in place, in advance, on how they’ll be managed.
A concern for people looking for care for a loved one with behaviours of concern can be how the care home ensures that people are safe, particularly if they have aggressive behaviours.
As part of the assessment process, we do a ‘community fit’ assessment which looks at whether our home is the right ‘fit’ for the individual, and if they’d be a good ‘fit’ for the home and the people who already live there.
We carefully plan our care and support to minimise risk to everyone, and have stringent safeguarding procedures in place.
Alongside many of our care homes we have OneCare services. These services are flats or houses that offer specialist nursing care in a single or dual occupancy domestic living environment, that’s separate to the main care home.
They’re ideal for adults who have complex needs that cannot be met in a group setting. This may include those whose behaviours require that they live alone, or those who have difficultly tolerating living with others in a way that increases risk.
Supporting staff safety and wellbeing
Care work can be an extremely rewarding job, but it is not always easy. Supporting staff wellbeing in care homes for people with behaviours has to be a high priority.
All of our care and nursing colleagues complete our Exemplar Positive Behaviour Support (EPBS) training that’s been certificated by the British Institute for Learning Disabilities Association of Certified Trainers (Bild ACT).
The training provides colleagues with the skills and knowledge to protect people’s fundamental human rights and promote person-centred, best interest and therapeutic approaches to supporting people when they’re distressed.
We also have a central team of mental health and behaviour support specialists who support our colleagues and service users who display behaviours of concern, including crisis or rapid intervention when a person’s behaviour is escalating.
The team is also supported by our consultant psychiatrist, Dr Akande, who supports people to manage their treatment. Together, they offer a fortnightly clinic, as well as regular advice forums for all colleagues.
About Exemplar Health Care
Exemplar Health Care is a leading provider of specialist care for adults living with complex and high acuity needs.
Visit the website to find out more: www.exemplarhc.com
How mental health impacts physical rehabilitation
Breakthrough Case Management discuss how a client’s physical rehabilitation is inextricably linked with their mental wellbeing
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.
Are we neurological time travellers?
Lisa Beaumont looks at the similarities between young stroke survivors and people living with Young Onset Parkinson’s Disease
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.
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.
The desire for discharge home
Renovo Care Group share a case study of delivering the rehabilitation and goals to help achieve the return home
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.
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
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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