A bit about me
I’ve been a researcher and part-time PhD student at SAPPHIRE at the University of Leicester for nearly four years. My day-to-day work is concerned with exploring how NHS hospitals ensure and improve patient safety – particularly focusing on organisational culture– while my PhD research is concerned with exploring patient safety from a patient perspective.
In November last year I was diagnosed with breast cancer, leading me to reflect on my experience of research in this area and relate it to my experiences as a patient. Simultaneously, as if this wasn’t enough, my mother was admitted to hospital with heart failure. I’d like to take this opportunity to explore the similarities and differences in our experiences of feeling safe or unsafe in the healthcare system.
Fear is the word
Words can’t really describe the sense of utter disbelief and shock at being told that I had breast cancer, despite my family history – my mother had had it twice. The initial shock was followed by a second blow after surgery revealed that the cancer had spread beyond the breast to the lymph nodes and the word chemotherapy was introduced.
It may seem strange, but my biggest concern throughout my treatment has not been about the cancer per se – it has been about the treatment. The word chemotherapy struck fear deep into the pit of my stomach. I remember how ill my father was following chemotherapy for his lung cancer and the way that his thick hair was reduced to patchy fuzz at the back of his head. Cancer patients are so very often signified as such by their head scarf, wig or baldness. The fear of hair loss was an overwhelming one for me, whereas the cancer itself was pushed right to the very back of my mind.
Given my interest in patient safety, I want to reflect on my feelings of how safe I felt during my chemotherapy and compare them with my mother’s experience of treatment and discharge from hospital. In this way, I intend to consider what these reflections may tell us about patient safety in general.
I receive a cycle of chemotherapy every three weeks and will have to have six cycles in total. Organising these treatment cycles requires a massive amount of co-ordination and administration. Each patient at the outset receives an induction pack and presentation, whereby nurses cover all possible side effects and what to do if experiencing any of them. A direct emergency hotline telephone number is given along with detailed instructions about when this should be called. Every third week there is a series of appointments to attend with oncologists, phlebotomists and nurses, each in strict rotation, to ensure that I am well enough to receive my next cycle and that any side effects can be managed effectively.
Fear is created by uncertainty and the first cycle was the worst because of not knowing what to expect. The wait was interminable and my anxiety levels were through the roof.
The chemotherapy suite contained six chairs, instead of beds – three on one side and three on the other – where patients were treated. Everyone was able to see everyone else in that room. The drugs arrived in a sealed pack from the laboratory and each nurse had to ensure that the drugs were for the person in the chair and each one was cross-checked by a second nurse in the presence of the first. My name and date of birth were also requested before administering each dose. Alongside this I was warned to inform the nurse should any stinging occur when the first drug – fluorouracil – is administered, because of the damage that it can do to tissue should it leak from the vein.
The process of administering chemotherapy is one where doing safety is highly visible to all within the ward. The need to scrutinise the safety of chemotherapy patients was highlighted by the tragic death of a young man in Nottinghamshire when a doctor wrongly injected the drug vincristine, (for intravenous use only) into his spine. The visible checking and cross-checking I experienced during my treatment promoted feelings of security, despite my anxiety about how I would feel after the treatment, because I could see that the safety of patients was highly important and carefully managed.
My mother’s care
My mother’s experience was somewhat different. She was admitted, aged 88, with heart failure into A&E. There, she was swiftly diagnosed and treatment for her symptoms began. Arthritis meant her mobility was poor, a problem compounded by her heart condition.
After a fortnight in hospital the staff made preparations for getting her moving. They asked her when she had last been got out of bed, and she replied that this had been the day before. Sadly, her response was not correct: she had not been out of bed for over two weeks. Getting up without the right support in place after so long in bed led to a near fall and a mad scramble for a hoist. No checks had been done. My mother’s experience of getting out of bed too soon highlights the need to provide full handover information about patients across shifts.
Eventually my mother began to improve and we were told that she could be discharged by the end of the week. A bed at a local rehabilitation hospital became available. But hospital failed to give us sufficient warning to be able to take her own clothing into the hospital. This caused her some distress, which was intensified when she was not transferred until after dark. Given that anxiety and fear arises when we don’t know what will happen to us, perceptions of safety among older people may be less concerned with difficult-to-observe systems failures than they are with a feeling of security and familiarity – as basic as wearing your own clothes.
Vigilance, advocacy and reassurance
Chemotherapy safety has discrete and clearly defined boundaries, rules and processes. There are eyes watching everywhere. In contrast, older people’s safety involves a range of tasks and is often more nuanced, making it particularly vital to listen to patients and patient advocates about what measures will create a sense of safety for patients.
Both examples really serve to remind us how context-dependent the concept of safety is. Feeling safe might mean different things for different people in a range of different circumstances, and it’s essential to take this into consideration when implementing safety procedures. Both of our experiences highlight the importance of checking, cross-checking, and reassuring patients, whatever treatment they are having, no matter what part of the patient journey they are on. As a patient, feeling safe can be just as important as being safe.