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.
The importance of reflection and communication for healthcare workers
Assistant psychologist Alarna discusses the ‘healthcare workers’ guilt’ of needing to take time out, and how admitting you’re not OK is vital
Reflection and communication are essential elements of learning and professional practice, as it allows an individual to review their progress, responses to situations, and subsequently grow from the experiences.
Are we truly mindful of what we are feeling? Are we carrying emotional burdens into work and then becoming so overwhelmed we cannot perform to our best?
As a healthcare professional, I have at times felt torn between looking after my wellbeing and the duty of care that I have towards my patients. Have you ever been off work genuinely unwell and experienced what I term ‘healthcare workers’ guilt’ because you are not there for your patients?
What happens when life circumstances occur, such as a major trauma, loss, or bereavement? I believe now more than ever during this global pandemic it is relevant to have this conversation. After reading a very moving reflective piece of hers, I decided to interview student nurse Angelina about this very topic. Angelina and I work in different hospitals, but I have taken this opportunity to raise awareness of the importance of recognition, communication and reflection on our own personal emotional status.
Angelina, I was so touched by your reflection and thank you for allowing me to share some of it to raise awareness. Can you tell me what your experience was?
“I was in the ophthalmology department for my last placement in first year. This situation happened over two days. The weekend prior my grandfather had passed away. As my grandparents and most of my extended family live in Tanzania, the distance from the UK and timing of his death meant that we couldn’t all go to his funeral back home, so my mother was going to attend on our family’s behalf.
“That weekend had been a very difficult weekend for me, as I returned home from university to grieve with my family briefly before my mother’s leaving. I was fully aware of how I was feeling, and I wanted to stay home with my family for longer. However, I had this overwhelming sense of responsibility to complete my placement and my year one competencies.”
How were you when you did go in to work?
“On the first day, when I arrived at placement, my mentor noticed that I was not the self she had become accustomed to. She requested that we have a short meeting before any patient visits, where I opened up to her about the difficulties of that weekend. She asked me if I felt that I would be able to continue with the day and offered to liaise with the ward sister and my academic advisor about giving me proper time off to grieve.
“Again, the responsibility I felt to complete my placement saw me opting to stay on, although it was to be very short lived. Whilst seeing our first patient, I left the room to get some equipment. I found myself rushing to the staff room to wipe my eyes and control my breathing before returning to the treatment room. After our patient left, I told my mentor that I was struggling to manage my emotions and requested to leave for the rest of the day. I really wanted to believe that what I needed in that moment was to just rest and ‘sleep it off’.
“The next day, I attempted placement again. This time I was working with my mentor’s colleague, who also noticed that I wasn’t my usual self. She implied that I appeared deflated and low in mood. After seeing the first patient (who happened to be an elderly gentleman) I felt overwhelmed with emotion once again. I told the nurse that I had reached my emotional limit and I needed to go home. We discussed it with the ward sister and she decided that I should take the week off to grieve as I needed, and I would communicate with my academic advisor if I needed extra support.”
On reflection, do you think you were not aware of how you were feeling?
“I was aware of my emotions. However, I made a choice. I tried to supress them. I had anxiety about a few things simultaneously. I was dealing with the hurt of our loss, as well as the guilt I felt for returning to university instead of staying home with my family. Although they encouraged me to stay strong and complete the year, I was aware of my dislike of the idea. Furthermore, I experienced anxiety about completing my competencies and finishing my placement obligations, as well as making up the hours that I had lost from taking time off.
“I appreciated how intuitive and emotionally intelligent my mentor, the other nurse and the ward sister were. They took my emotions seriously and made provisions to support me as best as I would allow them. I felt out of place and vulnerable. I worried that I wasn’t going to be able to provide quality patient care. I feared my patients’ and colleagues’ perception of me and I chose to put the patients’ experience and my university obligations first.”
What is your biggest takeaway from this experience?
“Having an awareness of emotion, particularly my own, also meant communicating and managing them well and knowing how it can affect those around me. I was initially reluctant to share what I was feeling, but in doing so I gained the support I needed. I also created an external support network consisting of family and friends to share my emotions with. Having this outlet meant I was able to better manage my emotions in the clinical environment.
“Taking time to engage in reflective practice aids in developing personal effectiveness. I was able to be a better student nurse once I learned to take care of myself, acknowledge my feelings, create a support network and consistently reflect and release.”
Thank you so much for sharing and being so transparent this is so important for us to have this conversation, particularly in the healthcare industry.
Hearing Angelina’s experience was very touching and so relatable, and I thank her for her transparency. I hope it encourages others to be open about their own experiences. Having lost my grandpa early this year, and a few short months ago losing my aunty, whilst experiencing Long COVID in between, I recognise the vital importance of knowing when to say you are not OK. Knowing when to take a break and really reflect and process.
Like Angelina, I am grateful to work with colleagues and my supervisor who are very attentive and caring across the board. I would like to encourage all who work in these types of environments, or anyone who works with people in general, to use reflective practice, it is so important and helps to ensure a healthy, whole and happy workforce.
I take this opportunity to say thank you to our frontline staff and support staff at Renovo Care and the NHS as a whole, who have been working tirelessly and at risk through this pandemic.
Finally, to all who may have lost loved ones during this pandemic, my thoughts are with you, and I hope you have given yourself the space and time to process and breathe.
Let us be our best so we can give our patients the best!
Symptom variation over time – learning in real time from lived experience
In the UK, the average patient will see a GP around seven times a year, according to the Royal College of GPs. This is a rise from 20 years ago, when a patient would see their family doctor around three times a year.
With an average appointment time of 9.2 minutes, British patients see their family doctor for less time than patients in the United States, Sweden, Canada, Spain and Japan.
There are 8,760 hours in a common (not leap) year. In the UK, patients have about one hour per year on average with a UK GP. During the other 8,759 hours, symptoms come and go over weeks or months, so what is recalled at the consultation may not be accurate. Such symptoms sometimes just go away, but at other times these symptoms are a sign of something that needs treatment. We are often told “if it doesn’t go away within x days, see your GP”. Yet 2020/1 has made this more challenging to do, whether virtually or face-to-face.
So much to say – so little time
There’s the challenge of getting the phone call answered at the GP surgery, getting a consultation time that suits and the anxiety of getting there and waiting for your time slot. How easy is it to forget some of the detail of the illness? How can doctors solve problems with imperfect information and poor communication as well as recall error? Is “doorknob syndrome” becoming a greater problem?
Healthwatch UK advises: “Before you see your GP, think about what you want to say. You can always write down your symptoms, worries and any questions that you would like to ask, so you don’t forget.”
Similarly, Cancer Research UK and other organisations provide tips to help patients to get the most from such precious but brief appointments. Top of their list are:
- Write down your symptoms including when they started, when they happen and how often you have them.
- Write down anything that makes them worse or better.
How many patients do this, or have the capability or opportunity to do it even more effectively?
How can doctors feel empowered when their time is so pressurised, when there is a tsunami of data, information and knowledge let alone a mountain of paperwork and covid precautions on top of that? How can patients feel empowered when it is so difficult to see a doctor when they are most worried about their signs and symptoms?
COVID-19 makes things more complicated. Patients with multiple symptoms that vary from day to day find it especially hard to give a clear and concise summary. Even worse if they have fatigue and brain fog. Recall error is more of a problem. Could the patients be more empowered?
Symptom-tracking and real time data
There is a conundrum – how do we empower the patient-doctor relationship and strengthen the therapeutic alliance when there is less face-to-face time and longer waiting lists and more complex conditions? Achieving any of these might be easier if there was an increase in consultation time.
This draws attention back to the advice to patients to prepare to get the best from their consultation, how can digital technology help a good proportion of patients to do this ahead of the consultation? It is accepted that all patients will not use technology.
Accurate responses to questions about when symptoms started or when they happen and how often they occur could become digital real time data – provided this is sufficiently easy and well-structured. The acceleration of public health awareness and communication between doctors and patients via NHS Digital tools regarding symptoms has been a legacy of covid-19. While accepting that all patients won’t need or want digital, empowering those who do want or need it can relieve some pressure on the system as a whole and, over time, more will embrace it.
TIYGA™ – time is your greatest asset
So how do we manage to utilise time with GPs, nurses and specialists more efficiently? Patients and doctors must use their time together more productively and anything that can be captured, measured, calculated, and displayed in the right way ahead of the consultation must happen. Healthcare professionals are trained to deliver consultations, but patients are not trained in how to prepare to see different healthcare professionals with different specialities. In these time-poor days, it is more important than ever that patients present the right data to the right person at the right time and in the right place.
Personalised medicine is increasingly important in preventing, predicting, and managing many health conditions and we don’t just mean at genomic level, but more holistic treatment and accepting that not all one size fits all. In 2019, the UK had 55.5m smartphone users and this is expected to rise to 64.9m by 2025. According to Statista, in 2024, the smartphone user penetration rate is expected to reach 88.1 per cent of the total UK population – 93.7 per cent in 2025. In 2020, 70 per cent of 55–64-year-olds owned a smartphone. How can we justify not making better use of this high adoption rate?
Talk to many clinicians and they’ll tell you that all their patients don’t have a smartphone and don’t have access to broadband. In 2020, the overall share of households in the United Kingdom (UK) that had access to the internet was 97 per cent. The overall share of households in the United Kingdom (UK) with internet access was six percent higher than the average of the European Union (EU-27).
The challenge is not in the technology. We send people into space, we replace human vital organs, we can replace joints and even create and successfully rollout vaccines to fight novel virus at record speed. Do we encourage people to use popular consumer devices to record simple, routine health data in a way that can help our healthcare professionals to get more efficient input to consultations?
We will always need GPs, and nobody expects every poor pensioner to become a geek but symptom-tracking by smartphone could reduce the time many patients need to spend with a GP, fewer consultations might be required to make a diagnosis and the first consultation at secondary care could be more efficient. Taken together, these factors could reduce some pressure on waiting lists.
- By Katrina Delargy of TIYGA Health
Who am I? Self-identity following an Acquired Brain Injury
Dr Anita Rose, consultant clinical neuropsychologist at Renovo Care Group, explores the issue for NR Times
Who am I? Arguably life’s most defining problem. The answer as we all know is identity. But this is not the complete answer because “who I am”, my identity, is an all-encompassing system of memories, experiences, feelings, values, roles, thoughts and relationships.
When I am asked who I am my answer is likely to be multi-faceted and the answer will depend on the situation I am in. I might say. I am a mum, a wife, an Ouma (Grandmother), a sister, a clinical neuropsychologist, a friend, a regular church goer and so the list goes on.
This question permeates my working life as I sit with patients who want to know who they are now, how they can be who they used to be. They are scared, frustrated, anxious and believe that they can no longer be “me”. They face what the world calls an “identity crisis”. They are looking backwards prior to the traumatic, sudden, life changing experience they have gone through to this moment in time, to now after the brain injury.
This exploration highlights a gap, the gap between who they were before to who they are now. It is this gap that leads to the questions of “Who am I now?”, “What can I do now?”, “Where do I fit in?”.
Prior to their injury they had roles, “identities”, felt valued, helpful, independent, and confident in their life’s purpose. But now they report feeling lost, useless, frightened, insecure, stupid, lazy, and unreliable.
The gap seems insurmountable as they will report feeling they have gone from being kind, caring, and happy, to angry, sad and being a burden. These feelings are driven by the comparison of self-perceived capabilities pre- and post-injury. Such comparisons lead to the experience of “I am not me anymore” as the brain injury at a deeper level alters the sense of self and the qualities that define who they once were.
When I first started working in neuropsychology many years ago, I found the concept of loss of identity a real challenge. How can I support those whose lives have been dramatically changed “in an instant”, who maybe now very physically disabled and cannot return to their employment, their sport, their previous life?
I noted that many times individuals would turn to those around them to feed their self-worth. They would seek reassurance and praise from others to feel okay about themselves. Whilst in the moment such validation might support their emotional wellbeing, dependency on external validation is extremely detrimental.
Often patients would be perceived by caregivers as presenting with behaviours that challenge because they might be seen as demanding, for example constantly buzzing their call bell for reassurance. The reality is that sense of self should not come from other people but come from within. The most important relationship we can have is with ourself.
Over the years of clinical work, participating in research and listening to my patients stories I have learnt that the only way to support a person to develop that new sense of self is to recognise each patient brings with them their own unique life history, values and social context.
I have found that for many of my patients it has been about working together in a collaborative and supportive therapeutic relationship, a collaboration where the individual in is the centre. Based on mutually agreed goals we start out on a journey of rediscovery.
The initial stages of the journey are about grief and loss and enabling someone to express their grief and being given permission can be very powerful moment. The next stages are often around building awareness of the results of the brain injury as much raising self-awareness of the “me before” and the “new me”.
What is different? What is still the same? Can we build the bridge between the two parts of “me”?
Moving along the journey we start to look at the most important relationship in their lives, the one with themselves. When self-identity is challenged the ability to be compassionate towards one’s self is reduced. Finding news ways to promote self-compassion i.e. kindness and understanding towards one’s self can support the individual in finding meaning in their lives and achieve their personally valued goals.
Kenneth Gergen (1991) said: “One’s identity is continuously emergent, re-formed, and redirected as one moves through the sea of ever-changing relationships. In the case of ‘Who am I?’ it is a teeming world of provisional possibilities.”
The journey can be full of mountains and valleys, monsters to face but in my work at Renovo Care Group we recognise the various challenges these cause both the individual and their families.
We appreciate the need for a directed multi-disciplinary approach to work collaboratively with our patients by supporting them to re-engage in meaningful activities and to find meaning in their life following their brain injury. In other words, we are trying to re-establish the “bridge” across the gap between old and new. We support the patient along the journey leading to the “new me” after brain injury and look at how a comprehensive IDT evaluation and treatment of the “damaged sense of self” can lead to increased self-esteem, self-efficacy, and self-empowerment. All this leads to an improved quality of life for both our patients and their families.
But to end, it is the patient voice that speaks the loudest. A recent patient after going through this journey spontaneously said in his last session, whilst leaving the therapy room, “I have re-found myself”. He may still be profoundly disabled as a result of his brain injury and not met his original goal to walk again, but he has found an identity, a new sense of self that has emerged and reformed as he has found reconciliation between his self “before” and his “new me”. A bridge has been built across the gap.
It is for this reason that I find my role, and the role of the IDT (Interdisciplinary Team), in neurorehabilitation so fulfilling. As a patient learns to be self-compassionate, moves towards reconciliation and acceptance of the “new me”, regardless of whether or not their original goals have been met, the end of their rehabilitation process has been positive as they leave feeling empowered and able to believe they have a world of “teeming provisional possibilities”.
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