TBI is not a single event, but can be a chronic and often progressive disease with long-term consequences.
Even after an ostensibly good recovery, patients might have to live with a continuing process of coping and adaptation.
TBI represents 30-40 per cent of all injury related deaths and neurological injury is projected to remain the most common cause of disability from neurological disease up to 2030 – two to three times higher than the contribution from Alzheimer’s or cerebrovascular disorders.
A report by the Centre for Mental Health – Traumatic brain injury and offending. An economic analysis – states that approximately 1.3 million people in the UK are living with head injury-related disabilities, with these injuries causing around 160,000 hospital admissions each year.
TBI also has a marked impact on the economy, at a cost of £15bn a year. This figure comprises lost work contributions, premature death and health and social care costs.
This £15bn does not, however, include the human cost of head injury to the injured and their families’ wellbeing and quality of life, which is clearly the biggest cost. The impact of a TBI on an individual may be wide-ranging with not only a reduction in cognitive abilities and executive function, but also in mental health difficulties, problems in psychosocial functioning and a reduction in self-esteem and self-awareness.
The results of a study on longer-term outcomes (Hoofien et al, 2001) reveal relatively high rates of depression, psychomotor slowness, loneliness and the family’s sense of burden amongst people with TBI. Another study of adolescent and young adult inpatients, evaluating cognitive, behavioural, depressive and self-awareness disorders (Viguier et al, 2001) highlighted a discrepancy between patient and clinician’s evaluations suggesting a lack of self-awareness of behavioural and cognitive disorders in TBI patients.
It was mooted that correlations of depressive mood with anxiety and cognitive complaints seemed compatible with some degree of lack of self-awareness of cognitive and behavioural difficulties in the TBI patient group.
A further study on identity, grief and self-awareness after TBI (Carroll et al, 2011) revealed that 90 per cent of participants suffered from low self-esteem at levels deemed clinically significant.
TBI is also a huge hidden disability within prison populations, according to the University of Salford. Prisoners who have had head injuries are more likely to experience a variety of mental health problems including severe depression and anxiety, substance use disorders, anger and suicidal thoughts.
Physical exercise has the potential not only to improve physical health but also to have a positive effect on mental alertness and mood in the general population. Exercise can result in an increase in self-esteem and self-worth in all age groups from children to older adults (Baumeister et al, 2003).
Studies on the benefits of outdoor activity in addressing problems associated with TBI point to improvements in self-esteem, self confidence, increased control, memory and planning.
A one-year outcome study of a three day outward bound experience (Lemmon et al, 1996) recorded a range of positive outcomes. At the one-year evaluation, 83 per cent of the participants ranked themselves above their pre-course rating in an understanding of their strengths and limitations.
Other positive changes over the same time span included: ability to rely on others (50 per cent), higher self-esteem (58 per cent) and improvement in problem solving (50 per cent).
It was commented that the outdoor challenge course allowed therapists to help the participants recognise and acknowledge their thoughts, feelings and behaviours during the course and that, one year later, the participants were calling on this understanding to improve their daily functioning.
Another UK pilot programme (Walker et al, 2005) incorporated a context-sensitive approach to cognitive rehabilitation with a focus on goal planning with goal attainment as an outcome measure.
The results revealed a high level of achievement (over 80 per cent) on selected, identified, specific and mainly practical goals. In discussing the results, the authors considered that the strength of the project appeared to lie partly in the motivation provided by the outdoor activity course; which appeared to later encourage participants to work towards broader goals.
An Australian study (Thomas, 2009) was similarly positive. Participants attended a standard nine-day outward bound course adapted to meet the needs of the participants. Fortnightly meetings over a period of three months were then facilitated by rehabilitation staff who had also attended the course.
The focus of these meetings was on “restructuring” tasks including achievement of individual goals, problem solving, further life planning and social skills development.
A comparison group matched as far as possible to the experimental group who did not attend the course was also evaluated using quality of life analysis. The findings were as follows:
1. Understanding: Participants reported that they gained insight into personal strengths, limitations and unexpected capabilities as a result of engaging in the programme’s activities.
2. Re-integrating identity: Participants identified increases in self-confidence and competence and this had a positive impact on their sense of identity. Several participants noted that they felt they had more control and responsibility for the direction of their life.
3. Acceptance: Participants stated that the outdoor activity course had helped in the processing of their acceptance of the impact of their injuries on their lives.
4. Restructuring: Participants who attended most of the follow-up groups were seen to report most improvements as shown by Quality of Life Inventory (QOLI) evaluation. This may be the result of the follow up group providing time for reflection, to set and refine personal goals as well as group encouragement and support.
The Lake District Calvert Trust ABI Rehabilitation Programme
TBI can have profound long-term consequences, not only to individuals, but to their families, carers and society as a whole.
The impact of a TBI on an individual is immediate but TBI survivors may also have to live with a continuing and developing need of coping and adapting (Maas et al, 2017). It has been shown that post-TBI, an individual may have to cope with a reduction in cognitive abilities, a reduced ability to plan and make decisions, mental health difficulties such as depression, and psychosocial problems with a lack of self awareness, self esteem, self control, apathy or aggressive behaviour (Levin et al, 1991).
Physical exercise is known to improve physical health and also to have a positive effect on mental alertness and mood in the general population. The pathology associated with TBI can be characterised by a reduced capacity of neurons to metabolise energy and sustain synaptic function which often results visibly in emotional and cognitive problems (Wu et al 2011).
The anti-neurogenerative effects of exercise are beneficial to neurocognitive functioning and neuroplasticity, while the detrimental effects of TBI on the vasculature may be reduced by carefully selected exercise/activity programmes.
It has been suggested that the concept of exercise providing a “scaffolding” may aid the understanding of the benefits of exercise to the injured brain.
It is thought that physical exercise reinforces the adaptive processes of the brain post-TBI, facilitating the development of existing networks and helping to compensate for those lost through damage (Archer, 2011).
The Lake District Calvert Trust (LDCT), which has provided outdoor activity for people with disability over the last 40 years, has developed a proposed post-acute ABI rehabilitation programme which will support brain injury survivors in a new residential centre.
It was developed with the support of clinicians and academics and the limited, but positive,initial results of research of outdoor activity in rehabilitation following TBI.
The rehabilitation programme, delivered by a team of clinicians and specialists in outdoor activity, will be tailored to each individual participant’s needs, with the aim of providing the tools needed for people to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels.
Experiential learning and rehabilitation through outdoor activity is therefore not simply about the specific skills learned or the satisfaction of completing a challenge, there are also improvements in self-esteem, self awareness and self-confidence, lifting of mood and clinical depression, as well as cognitive improvements. Importantly, learning can then be internalised, and transferred and applied to daily life.
The LDCT ABI Rehabilitation Programme acknowledges and supports the recommendation of The Lancet Neurology Commission Report in 2017:
“There is a clear need for studies to inform guidelines on rehabilitation approaches and optimum timing of rehabilitation in TBI. Such guidance would need to take into account the growing evidence that the diversity of disability after TBI is best addressed through a holistic approach to rehabilitation delivered by a multidisciplinary team.”
The LDCT will be carried out at PHD level in conjunction with Newcastle University.
‘Don’t be alone, don’t be too proud to reach out for help’
After Vasili Kalisperas was born a healthy baby, his jaundice was left undetected by midwives and led to him being left with cerebral palsy and needing round-the-clock care. Here, his mum Elena discusses the huge mental health challenges of being a parent in such a position and how she learned to admit it’s OK not to be OK
I’ve always been a very optimistic and positive person, which I do think helps during such traumatic times, but that’s definitely not to say it hasn’t been a struggle. As equipped as you might be in terms of your outlook on life to deal with challenges, when something so traumatic happens to you, it is of course going to be a struggle to come to terms with that.
No-one tells you how to cope, you can never prepare yourself for something like this. There is no right or wrong way to do things and you can only get through it as best you can.
My husband and I dealt with things so differently in the early days. He found comfort in talking about what had happened to Vasili, by sharing a lot of information on social media, whereas for me I was more introvert, I didn’t want to do that.
I was diagnosed with PTSD, which stemmed from the fact our situation was so completely preventable. I became fixated with Vasili still being in the womb, when things were still fine, and I so desperately wanted to find a way to turn back time. I had a water birth with Vasili, and every time I had a bath I’d be in there for hours crying, reliving the whole experience of giving birth to him, feeling the exact pains I felt.
My husband made sure I was cared for and was OK, but finding help was hard. I did try and get medical help but the waiting list was huge. I waited for over a year to see a therapist but I didn’t find it helpful – she wasn’t trained in my needs and was a general counsellor, so I didn’t get anywhere. I was then referred somewhere else, but that was in the same place I had my check ups when I was expecting Vasili, and that in itself was too traumatic.
After being bounced around for a couple of years, eventually, I went privately and found an amazing therapist. It does take a huge amount of time and energy to relive the experience, but I found that opening up and talking about how I felt was so important. I also discovered EMDR therapy through these sessions, which was fantastic and really helped me so much. I realised how far I had come through taking that decision to open up and look for support.
If you have a support network around you, then that can be vital in times of trauma. Even if friends don’t know quite what to say, the fact that they’ll listen can be so valuable. My mum and sister were always there, anytime I needed anything. There were times when no-one could say the right thing, no-one could fix what had happened, but just being able to talk and cry and share what I was going through helped me so much. You need to allow yourself time to grieve, as it really is a grieving process.
In society, while things have thankfully changed massively in recent years, there is still a feeling for many people that showing emotions is a sign of weakness. There is still a stigma in admitting you’re struggling with your mental health, but I see that it’s like your physical health – you’re never going to breeze through life without any problems at all, it’s going to happen to us all at some point. No-one should ever be afraid to admit they’re struggling and they need support.
Lockdown has been difficult for us all, and seeing the impact on the children and my oldest daughter in particular, has been awful. She is in high school and not being able to leave the house has had a big impact on her mental health. But as a family, we share our feelings and talk about it, and I teach my children the importance of positivity and an optimistic outlook to help them cope with challenges.
In learning to deal with what you face and move on with your life, you need to accept it and forgive yourself by recognising it isn’t your fault. It has been a long journey for me – Vasili will be nine in May – but we’ve made so much progress.
While Vasili and our other children are of course our priority, I’ve learnt the importance of making time for self love and care. Without making time for that, you’ll run yourself into the ground. For the last two-and-a-half years, the children have been at school every day, which has meant I’ve had time to take control of my mental and physical health. I started doing daily exercise, which began by making sure I got out to walk every day, and I now regularly go to the gym. It’s a big release for me.
I’ve also reached a place where I’m able to look to the future and I’ve started my own business as a hairdresser, working from home in a salon we’ve created in an outbuilding. Being a hairdresser gives me a chance to help other people to open up and discuss anything that’s on their mind, which for many people may be the only chance they have to do that. And also, I’m training to be a personal trainer – I’m already a mental health first aider, and I’ve seen for myself the impact that exercise can have during the most trying times, so I think the combination of mental and physical wellbeing support is so important and I’d love to help people with those.
For me, in being able to find acceptance of our situation, I’ve been able to move on and find time for myself and what I want to do with my life. I’ve definitely found my purpose, both as a mum and as a woman, and I’m in a much better place now. But without having the strength to open up, to reach out and admit I needed some help, I don’t think I’d have reached this point in my journey.
The one thing I’d say to people who are struggling, whatever their situation or circumstances, is to talk. Don’t be alone, don’t be too proud, and reach out to someone. I’m so pleased I did.
‘I’m a rehab professional attempting to rehab myself’
Having contracted COVID-19, which has now become Long COVID, assistant neuropsychologist Alarna continues to battle a number of effects, including fatigue. Here, she shares her reflections on her experience, which has enabled her to gain a greater understanding of her patients’ wish to return to their ‘normal selves’
My name is Alarna, and I am an assistant neuropsychologist at a specialist private neuro rehab hospital. I have worked in both supported living and rehabilitation settings for the past 14 years, with various mental health conditions, psychologically rooted illnesses, degenerative diseases, and rare neurological presentations.
Today in discussion with our company director responding to the question of “How are you?” I found that I had reached a new level of understanding for every patient that I had worked with. I found on some level I could identify with their journey as I am attempting to rehab myself. I answered, “I just want to get back to my normal self”.
In December 2020, I tested positive for the coronavirus and was severely unwell for a period of 2-3 weeks. I initially was unaware that what I was experiencing was anything other than being run down or having a common cold. It was not until day four when I woke up feeling as though someone was sitting on my chest, each time I moved I had to take shallow rapid breaths to remain upright and when I coughed it felt as though I was being punched with weighted gloves from all angles.
This was unlike anything I had experienced in my life. Being someone who would be over a cold within 3-4 days (and very ironically did not know how to properly rest) the situation was entirely foreign to me.
Having thankfully recovered some weeks later I began to find myself falling asleep involuntarily every 2-3 hours, I was still breathless on exertion (from walking up a flight of stairs to carrying a handbag) and generally feeling weak. After seeking advice from NHS 111 I was reassured that this was to be expected following a virus and should subside in a week or so.
Throughout this period, I had regular contact with my supervisors at work who were (and still are) extremely supportive, reassuring, and understanding. It was not until several weeks later that we discussed an action plan to help me ease my way back in to work.
This brings me back to today, four months after having COVID-19 and still suffering with chronic fatigue, occasional breathlessness, and migraines. I am unable to complete a full day at work and once I get home at approximately 3:30pm I have no choice but to stop everything and sleep.
Just a key point I would like to throw in here. Fatigue is not the same as being tired!!
I have been burnt out before, I have been exhausted, and I have been tired, but this unexplainable experience is not like any of the aforementioned. It is like an involuntary shut down. People who mean well advise me to just rest or sleep more not realising that I am sleeping up to 14 hours most days and still waking up feeling exhausted.
In my attempts to help the process along I have completely changed my diet, dropped 20lbs of excess fat, complied with resting when my body tells me to, and my energy levels remain poor. Some days it feels as though my speech is unnaturally slow and slurry, though when asking my colleagues, it is not so for the listener. In summary I cannot function without having a 2–3-hour nap in the early afternoon as well as a full night of sleep.
Though there are so many unknowns with this virus, from my experience I have learnt the following:
– The importance of self-care and rest. Sometimes in the busyness of life what we think we are doing to take care of ourselves really is not self-care.
– To appreciate the stillness and tranquillity of silence
– Spending time alone and reflecting is so peaceful.
– Your health is one of the most important things you have and needs to be a priority. Facts that I knew before but like so many, have taken for granted.
Personally, as a woman of faith I believe that this situation has and will work out for my good in the end, there is always a lesson or a positive to be taken from every experience. This has also fuelled my ever-burning desire to be instrumental in changing lives for the better, starting with my own.
This situation is only temporary but for many of my patients it is not and returning to their former self is a distant memory not to be realised.
I take this opportunity to thank my incredible supervisor/mentor at Renovo Care, Dr Anita Rose, and Margreet, as well as my amazing colleagues Ana, Chris, and Simone for being so caring and supportive during this difficult time.
Rest in peace to all of those who have lost their lives because of this horrible virus, including my dear Grandpa. May we find and be the solution! Stay safe.
A rehab professional attempting to rehab herself.
Taking time to look back – so the way ahead is clearer
Reflective practice within healthcare settings is widely talked about, but not always so easy to implement in the workplace. NR Times speaks to one neurological centre about how it benefits patients and staff there.
Reflective practice and discussion in healthcare settings is a professional requirement for nurses, as laid out by the Royal College of Nursing revalidation requirements as part of their continuous professional development.
It allows professionals to take time to pause and reflect, communicate and plan, which undoubtedly leads to better outcomes for patients and staff.
But in reality, reflective practice can often be left to the bottom of the pile, underneath many of the competing responsibilities facing staff who are often pressed for time.
It could be argued that this is also why reflective practice is so important – healthcare staff are facing so many pressures that it actually makes less sense to neglect the important work of individual and team reflection.
The Royal College of Nursing defines reflective practice as: A conscious effort to think about an activity or incident that allows us to consider what was positive or challenging and if appropriate
plan how it might be enhanced, improved or done differently in the future.
Staff at Elysium St Neots Neurological Centre in Cambridgeshire started doing regular, weekly reflective practices when its new hospital director, Fiona Box, came into the role a few months ago.
The nurses and healthcare assistants from a ward are invited into the meetings and in their absence the therapy staff monitor patients and provide activities.
“We thought it would be helpful for team members to give them the opportunity to think, learn, and to hear their opinions,” says charge nurse Jemima Vincent.
“If we have an incident with a patient, we discuss it in the session” she says.
Sessions are led by the management team, with added input from psychology teams on each ward.
They will talk through any strengths, weaknesses and opportunities, and work through an analysis to learn from the incident and create an action plan.
They talk about the worst-case scenario in relation to an individual situation and discuss how staff would manage that, so they’re better prepared in the event of it happening.
While they focus on one patient at a time, issues arise during conversations that bring in their wider experiences.
In an article* published in the Nursing Times in 2019, Andrea Sutcliffe, chief executive of the Nursing and Midwifery Council said: “In these challenging times for health and social care, it’s so important that collectively we do all we can to support our health and care professionals, and their employers, in devoting time to individual, reflective, personal and honest thinking.”
Fiona has received encouraging feedback from staff, who say the meetings help the staff feel much more involved in a patient’s care and allow the team to increase their knowledge and understanding resulting in a more consistent way of working.
“Healthcare workers often don’t fully understand patients’ diagnoses or why they’re reacting in a certain way, for example,” Jemima says.
“They know a patient presents with certain behaviours and may be taking medicine to help them cope but they’re not aware why the patient is showing signs of aggression and the best response to deescalate the situation,” she says.
“It’s a learning opportunity for staff, because reflective practice means that they can understand a patient’s diagnosis and why they behave how they do,” Jemima says.
“Reflective practice answers their ‘why’ questions, and gives them a more open mind.”
Jemima also benefits from the meetings; it’s a way for her to get to know staff better, especially when it comes to learning opportunities.
“I’m able to understand what level of support each member of the team requires, including training needs and if they need more knowledge on a specific topic.”
In her final year as a mental health nurse student on extended clinical placement at Elysium St. Neots, Jo took part in a reflective practice session.
She had just finished her dissertation, in which she looked at how settings can increase the opportunities and variety of reflective practices within hospital settings.
The aim of Jo’s session was to reflect on the recent deterioration in a patient’s mental state and the resulting impact on their well-being to ensure staff had a consistent approach to support the patient.
The hospital’s director Fiona asked the team about the patient’s care plan, diagnoses and needs and wishes.
Where staff were unsure of the answers to questions, Jo says Fiona gave them answers and encouraged the team to share their knowledge of the patient, problem solve and come up with an agreed plan to move forward with.
Jo found the session helpful and was impressed with how the healthcare assistants were so involved in the discussions about all aspects of the patient’s care, including the more clinical elements.
Healthcare assistants told her they found the session helpful too and that it made them feel like they had a better understanding of the patient’s changing mental state, behaviours and needs.
Jo says having the opportunity to reflect on practice is a crucial skill for all healthcare workers to help them learn from their experiences and increase self-awareness, which, in turn, can improve individual professional standards, strengthen teams and enhance patient-centred care and clinical outcomes.
For referrals to Elysium St Neots Neurological Centre or other Elysium centres visit: www.elysiumhealthcare.co.uk/neurological
Reference source: https://www.nursingtimes.net/news/ professional-regulation/nmc-highlights-importance-of-nurses- reflection-on-practice-18-06-2019/
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