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.
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.
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
A holistic perspective on Post-traumatic amnesia
Specialists at St Andrew’s Healthcare explain how clients are supported through PTA
Post-traumatic amnesia (PTA) can be defined as the period following traumatic brain injury (TBI) during which continuous memories are unable to be established.
This is the time after a period of unconsciousness when the injured person is conscious and awake, but is behaving or talking in a bizarre or uncharacteristic manner.
The terminology of PTA is misleading as the name alludes to a single primary deficit in memory. While the inability to consolidate new memories or anterograde amnesia is the hallmark of PTA, further characteristics include impairment in orientation, attention and executive functioning along with retrograde amnesia and disinhibition
This article is based on a narrative review supported by the clinical experience of delivering interventions following traumatic brain injuries in patients on the brain injury assessment ward, at St Andrew’s Healthcare. The review included the definition of PTA, presentation, assessments and management.
PTA can occur when the force of an injury results in breakage, bruising and/or swelling of the axons with the consequence that message pathways are interrupted and/or broken. This is commonly described as Diffuse Axonal Injury (DAI). Diffuse axonal injury has been shown to be the main determinant of the relationship between PTA and severity of injury.
The amnesia resulting from trauma may be retrograde amnesia, particularly where there is damage to the frontal or anterior temporal regions. However, in some cases, anterograde amnesia develops several hours after the injury.
PTA may be either short term or longer-lasting, in some cases over a month, but is rarely permanent. When continuous memory returns, the person can usually function normally.
Retrograde amnesia sufferers may partially regain memory later, but memories are never regained with anterograde amnesia because they were not encoded properly. Memories from just before the trauma are often completely lost, partly due to the psychological repression of unpleasant memories (psychogenic amnesia), and partly because memories may be incompletely encoded if the event interrupts the normal process of transfer from short-term to long-term memory.
There is also some evidence that traumatic stress events can actually lead to a long-term physical reduction of the volume of the brain’s hippocampus, an organ integrally involved in the making and processing of memories.
Why is PTA important?
PTA has long been considered one of the strongest predictors of global outcome in severe TBI, and it is used as an instrument for determining the required level of patient supervision, as well as the timing and planning of discharge.
In addition, PTA has been demonstrated to have more precise predictability of outcome, in terms of functional independence level, disability severity, and determining the level of required supervision than either the Glasgow Coma Scale and the presence of loss of consciousness and cognitive impairment in TBI.
Clinical presentation and MDT assessment – the need to undertake a comprehensive multidisciplinary assessment
Patients with PTA may present with confusion, agitation, distress and anxiety. Other features seen are uncharacteristic behaviours such as violence, aggression, swearing, shouting, disinhibition, inability to recognise familiar people, and a tendency to wander. However, in other cases, individuals may be uncharacteristically quiet, docile, loving and friendly. Other features may include headaches, nausea, vomiting, dizziness, unsteady gait and intolerance to bright light or loud noise*
In all patients, it is essential to undertake a comprehensive multidisciplinary assessment of their health, impairments, as well as care and support needs. This enables staff to provide appropriate levels of support and intervention and should include neurological impairment, cognitive and communication abilities, eating and drinking abilities, nutrition and hydration status and psychological and behavioural difficulties.
The assessment should include the gathering of a comprehensive medical, psychological, psychiatric, occupational, educational, forensic and social history including any history of substance misuse. This will involve obtaining information from a variety of sources including interviews with family and friends and a detailed review of all multisource case records. The assessment should continue after the period of PTA has ended as the person progresses to the rehabilitation phase.
There should also be consideration of the use of the appropriate legal framework, such as detention under the Mental Health Act or provisions of the Mental Capacity Act during treatment and hospital stay.
The importance of family and friend engagement
It is important to work with the family and friends of the patient to help increase their awareness and understanding of the presentation and the likely prognosis. It can also sometimes be beneficial to the patient if visits are short and to acknowledge that too many visitors at once may be overwhelming and difficult for the patient to manage. All this will help the family understand the patient’s need for rest and quiet without excessive stimulation.
At times it may be better just to sit quietly with the person rather than engage in too much conversation which the person may find overwhelming and may struggle to follow.
Protecting a person’s right to privacy
Protecting the patient’s right to privacy and dignity is also an important consideration for the treating team. The family should be supported to think about who should be permitted to visit. The patient may behave in a manner which is out of character and perhaps embarrassing for them and it may be helpful to wait until the patient is more settled and potentially more able to communicate effectively and appropriately.
Visitors may find it appropriate to visit on a rota, especially if they feel unable to leave the patient without familiar faces for any length of time. It is also useful to provide guidance on how best to support communication with the patient.
The Westmead Post-Traumatic Amnesia Scale (WPTAS) is the most commonly used method for measuring PTA (Kosch et al, 2010). WPTAS is a standardised and validated instrument which is suitable for patients with moderate-to-severe traumatic brain injury. It is a prospective measure of PTA and has been shown to have a high level of interrater reliability.
The scale contains 12 questions related to orientation and memory. These include seven in relation to normal day-to-day orientation and five for testing the laying down of new information as well as autobiographical memory, such as age and date of birth. It can be conducted by any trained member of the multidisciplinary team in a variety of settings.
A care approach for people suffering with PTA
The care of a patient suffering from PTA requires a multidisciplinary approach that addresses the patient’s environment, their interactions within that environment and their cognition and behaviour
Patients with PTA require a consistent team approach to create and maintain a low-stimulus, quiet and supportive environment. These patients require a lot of rest with only short periods of stimulus. The following are recommended:
- To be nursed in a single room where possible, in a quiet and calm environment
- Reduction or minimisation of external stimuli
- Develop a consistent routine and structure. This will include clustering activities so patients are not overwhelmed, and allowing enough rest in between activities or tasks
- Carefully managing visits
- Create a familiar environment; using a few key personal objects and photos.
- Clear communication within the multidisciplinary team, by using appropriate yet discreet signage on the patients’ room door to notify all staff that the patient has PTA
- Using a modified approach to ward rounds, assessment, meals and care.
- Keeping instructions simple during communication
- Appropriate Occupational Therapy and nursing interventions during PTA to include introducing the patient to simple tasks such as personal care.
- Family support by the multidisciplinary team to ensure a focus on education and the provision of support for family and friends
- An understanding that management strategies for patients who present with aggression that involve negotiation and problem solving are unlikely to be successful
- The use of sedation to manage behavioural problems to reduce the patient’s level of arousal can increase confusion and prolong agitation as indicated by inconclusive studies relating to this area.
- Restraints should also be avoided as they can lead to greater agitation.
Our experience of PTA at St Andrew’s Healthcare
The Brain Injury Assessment unit, Tallis ward, at St Andrew’s Healthcare often receives referrals for patients with PTA who present with severe and challenging behaviour. The team has adopted a holistic, multidisciplinary approach based on the points described above. This includes ascertaining a robust and comprehensive history from family and other professionals alongside assessments undertaken in relation to physical health, functional ability, cognition, behaviour and communication.
Physical health considerations include seizure management, mobility and falls assessments, dysphagia and nutritional assessments and ongoing maintenance of skin integrity. Each of these is modified and adapted to the individual patient and their presentation at the time. Environmental adaptations like the use of an extra care area on the ward associated with concerted efforts to reduce external stimuli are also employed.
Assessments related to the use of appropriate and least restrictive legal frameworks is usually continuous and relate to timely and decision specific capacity assessments, including those related to consent to treatment and care.
This wide range of comprehensive interventions enable the team to effectively implement risk manage and treatment strategies to safely support patients through an episode of Post Traumatic Amnesia to reach a point where they can embark on their rehabilitation journey.
By: Dr Vishelle Kamath (consultant neuropsychiatrist – St Andrew’s Healthcare)
Dr Sanjith Kamath (executive medical director – St Andrew’s Healthcare)
Dr Awut Majak (speciality doctor – St Andrew’s Healthcare)
To find out more about St Andrew’s brain injury services visit Stah.org/brain-injury
* (Liersch et al, 2020: Liersch, K., Gumm, K., Hayes, E., Thompson, E. and Henderson, K. (2020). TRM 01.01 POST TRAUMATIC AMNESIA SCREENING AND MANAGEMENT GUIDELINE Trauma Service Guidelines Title: Post Traumatic Amnesia Screening and Management Developed by: K. Gumm, T, Taylor, K, Orbons, L, Carey, PTA Working Party Created: Version 1.0, April 2007.
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