In this article a stroke survivor describes her experience of hospital care after her stroke
Following a major stroke in 2009, the author of this article shares her experience of in-patient stroke care. She highlights areas of good practice and gives examples of how her experience and care could have been improved. She offers her story as a contribution towards a better understanding of the patient’s perspective on in-patient stroke care.
Citation: Wilson TC (2019) From professional to patient: hospital experiences of a stroke survivor. Nursing Times [online only].
Author: Carol T Wilson is currently undertaking a PhD at Keele University
- This article has been double-blind peer reviewed
Stroke is a common neurological disease affecting more than 100,000 people each year in the UK (Stroke Association, 2018). The majority are aged over 65, but approximately 21% of strokes in the UK occur in those under 65 (Morris, 2011).
Studies have found inconsistent findings in relation to the impact a stroke has on a young person, but as Teasell et al (2000) described reduced quality of life as typical. They found, in a study of stroke survivors under 50 years, that “family conflict and loss of home, employment and spouse were common practical problems”.
To put this in perspective, only 40% of those of working age who were in employment before the stroke successfully return to work afterwards (Stroke Association, 2012). This can in turn lead to loss of confidence and self-esteem.
Medical sociologists have drawn attention to the biographical disruption caused by stroke. Ellis-Hill et al (2008) noted that “People are facing not only physical challenges or pain but also major psychological and existential challenges to their sense of self. Who are they now? Who are they going to be in the future?”.
Alaszewski et al’s description of this disruption is one that resonates with me, as it aptly describes how I often felt following my stroke: “The suddenness with which stroke occurs can leave the individual with a sense of fear and uncertainty about the future; nothing will ever be the same for them again, and it is within this context that they have to try and negotiate and reconstruct their identity” (Alaszewski et al, 2003).
Haigh and Hardy (2011) report that the experiences of patients and service users are increasingly being viewed as a natural resource; their stories can be shared in more formal ways to support clinical practice and education.
Writing my story after my stroke has been extremely painful, as it forced memories that I had unconsciously buried to resurface. I hope my story will be viewed as a useful resource by health professionals, who I invite to walk in my shoes and reflect on how I saw myself as a human being and a patient during my hospital stay. I have divided my story into three phases: life before stroke, experiencing stroke, and surviving hospital.
Life before stroke
Before my stroke, I was an independent career consultant with my own business. I was on a train on my way to a meeting in London when I experienced what was probably a mini stroke, preceding the major stroke two and a half weeks later. I lost my vision and thought I was having a migraine. As the train was late, I rushed to the meeting and then carried on as normal. I had a potential known cause for both the sight loss and headache – migraine – so did not think I had reason to be concerned.
The following week I was in Oxford completing an intensive psychometric testing course and I was looking forward to a rest over the Easter weekend with my parents and niece. Soon after arriving at my parents’, I began to experience a severe pain up the back of my neck, which ran into my skull. I had previously struggled with musculoskeletal problems in my neck and thought this was returning. By Saturday night, the pain was serious and nothing would relieve it. My dad persuaded me not to drive back home on Sunday night, go to bed and make the journey back on the Monday.
The stroke experience
In the early hours of Monday morning, I had a major stroke. I awoke with an urgent need to go to the toilet, but found I was weak and unable to lift my body up and get out of bed. I put my right arm behind me, grabbed the headboard and, with a lot of wriggling, finally managed to sit upright.
Determined to get to the toilet, I then attempted to cross the room and found I was unable to stand up. I grabbed the stair banisters and tried to haul myself upright. As my left side was paralysed, I fell across the top of the stairs. My parents, who had heard me fall, came rushing upstairs. My mum told me to get up. I tried to tell her that I couldn’t but my speech was slurred.
My dad called an ambulance and I was rushed to the hospital, where I spent the next three weeks. I was soon to be 42 and desperate to get home for my birthday. My consultant told me I had to stay until tests had established the cause of my stroke – a bilateral carotid dissection. I felt incarcerated.
Ellis-Hill et al (2008) note that the “sense of coherence and predictability is challenged when a person faces a diagnosis of a long-term medical condition. People enter a world which is experienced as unfamiliar; usual rules which guide behaviour and action are lost”.
Impact of hospital routine
Every morning in hospital, I was woken at 6am when I washed using a bowl by my bed. Sometimes I had to resort to asking the cleaner to fasten my bra, a seemingly impossible task with a paralysed arm. It was quicker than waiting for a nurse to assist, while not being sure who might wander in and catch me undressed. On one occasion, the tea lady drew back my bedside curtain to hand me a cup of tea, only to find me standing there naked.
After washing and dressing I was left in a chair until I was collected for tests or scans. Lengthy sitting was immensely uncomfortable, as I had to rest my paralysed arm on a pillow balanced on my knee. I felt shattered from the stroke and just wanted to lie down on the bed.
While early mobilisation is considered extremely important to prevent complications (Cavalcante et al, 2011), nurses should also remember that fatigue is one of the most common symptoms after a stroke (Lerdal et al, 2010) and should balance the need for mobilisation with the patient’s feelings.
I longed for the end of the day when the physiotherapist would, occasionally, take me for a walk in the garden. I was re-learning to walk and she told me that I would not be ‘released’ until I had accomplished this and mastered climbing steps.
Mealtimes and supporting independence
After admission I was not allowed food or drink for a few days until my swallowing reflex had been assessed. I was delighted to be able to eat again, but found meals an ordeal. I was served jelly in a container covered with plastic film and sandwiches in a sealed packet, neither of which I could grip; it seemed impossible to get the wrappings off; and I often lacked the appropriate cutlery. I was also often given someone else’s meal, as this was apparently quicker than locating pre-ordered meals and delivering them to the correct patients.
Stroke survivors faced with the unfamiliar circumstances of hospital and a body that no longer performs in a way that they are used to understandably lose their self-esteem. It is important that their independence is supported by hospital staff and that they receive care that is empathetic, respectful and dignified (NHS England, 2013). Box 1 describes two examples of lack of empathy that I experienced while in hospital.
Box 1. Lack of empathy
While eating custard one day, it was dripping down the left side of my face. A young nurse pointed me out to her colleagues, remarking “Err, look at her” and then started laughing. I felt like a freak, although I had no idea what she was laughing at.
When I recounted the incident to my mum later, she gently explained that my face had drooped on my left side and that I needed to wipe the left side of my mouth when I ate. I had no idea that my mouth had fallen to one side, as I had not had the opportunity to look in a mirror. As stroke survivors reported to Lundqvist and Samuelsson (2012), “gaining awareness can be a painful process”.
On my birthday, the same nurse put a large box with a bow on my lap, containing a balloon and teddy bear from my colleagues. I expected her to wish me a “Happy birthday!”, but her greeting was: “This might cheer you up a bit!”. I was shocked and humiliated by the lack of empathy shown by the nurse for my situation.
Some staff made more effort than others to check on my wellbeing and in my next example I describe how this had a positive impact on my feelings.
The day after a patient had died on the ward, I was told I was going to be moved into the bed space that the patient had occupied. I had fallen earlier that day and needed to be observed, and that bed space was alongside the nurses’ station. The prospect of moving just as I was getting used to things was unsettling, and the thought of sleeping in a bed in which a person had just died was scary.
As she took me for an MRI scan, a kind support worker allayed my fear of being moved to the ‘death bed’ by explaining that I would not actually be moved into that bed, but only into that bed space, as my actual bed was going to be moved with me. I really appreciated the fact that the support worker also took the time to explain to me that the other patient had died of emphysema, not of a stroke.
Feelings of isolation and lack of freedom
I spent the last week of my stay in a private room on a rehabilitation ward. Although I was glad to be making progress, I really missed the busyness of the ward I had grown used to. The single room felt like a prison cell. Most staff said they lacked time to take me to the shower or outside. One nurse suggested I opened the heavy sash window in my room and did not seem to understand the difficulty I would experience attempting to do that with a paralysed arm.
On another occasion, a nurse tried to stop my parents taking me out, but my dad made it plain that he would not overtire me; and so, much to my relief, my daily exercise went ahead. While it is important for nurses to have the courage to speak up if they have concerns, listening and understanding an individual’s health and social needs is equally important. Ellis-Hill et al (2008) suggest use of the ‘life thread model’, inviting practitioners “to consider how often their interactions with patients are governed by professional agendas rather than enabling patients to share their own concerns”.
It was often after midnight when the night medication was given to me, by which time I was struggling to remain awake, which I knew I had to in order to take my tablets. The dispensing nurse would always leave the door open on their way out. Commitment to improving the patient experience means attending to seemingly small details like this one. The open door left me vulnerable to confused patients wandering by and made the room draughty. I was unable to get up to shut the door, as I was in a bed with bed rails to stop me falling out in the night and the call bells were rarely answered.
I had been given a choice about the bed rail, but with a body I could no longer control I was scared of falling out of bed in the night, so I opted for the safety of the rail. The issue here was the lack of autonomy because of call bells not being answered, rather than the use of rails.
Box 2 contains a few points for reflection. As Ellis-Hill et al (2008) explain “the centrality of the patient within healthcare services has been an important theme in recent UK policy documents such as the NHS plan and the national service frameworks”. It is within that context that I offer my own unique experience and make suggestions that would have transformed my hospital experience and made it less of a struggle. I appreciate that this is only one patient’s experience, but every patient matters.
Box 2. Points for reflection
- How can you balance rehabilitation and rest after a stroke?
- How could the patient’s mealtime experience have been improved?
- Why do you think the patient felt isolated in a side room and how could you have supported her?
- What assistance should the patient have been given to wash and dress?
- How do you ensure privacy and dignity on a ward?
The Stroke Association has a section on its website called ‘Beyond FAST – Other symptoms you should know’
- Stroke is a common neurological disease affecting more than 100,000 people each year in the UK
- Stroke can lead to loss of employment, family conflict, relationship breakdown and fear about the future
- Loss of self-esteem can occur after a stroke
- Nurses need to be sensitive to issues patients may find distressing, such as problems with eating or speaking
- Fatigue is a common problem after a stroke and rehabilitation and exercise should be balanced with periods of rest
Acknowledgements – I would like to thank Professor S Read, Dr S Hunter and Dr S Ashby for their feedback and encouragement when writing my story.
Alaszewski H et al (2003) Life After Stroke: Reconstructing Everyday Life. England: The Nunnery Fields Trust Fund and the University of Kent. Bit.ly/AfterStroke
Cavalcante TF et al (2011) Nursing Interventions for stroke patients: an integrative literature review. Revista da Escola de Enfermagem da USP; 45: 6, 1486-1490.
Ellis-Hill C et al (2008) Using stroke to explore the Life Thread Model: an alternative approach to understanding rehabilitation following an acquired disability. Disability and Rehabilitation; 30: 2, 150-159.
Haigh C, Hardy P (2011) Tell me a story – a conceptual exploration of storytelling in healthcare education. Nurse Education Today; 31: 4, 408-411.
Lundqvist A, Samuelsson K (2012) Return to work after acquired brain injury: a patient perspective. Brain Injury; 26: 13-14, 1574-1585.
Morris R (2011) The psychology of stroke in young adults: the roles of service provision and return to work. Stroke Research and Treatment [online].
Teasell RW et al (2000) Social issues in the rehabilitation of younger stroke patients. Archives of Physical Medicine and Rehabilitation; 81: 2, 205-209.
Stroke Association (2018) State of the Nation. Stroke Statistics.
Stroke Association (2012) Stroke in Young People.