Box 1.

Lowri Smith's experience

In 2018, I was a patient in the intensive care unit (ICU). At the time, it was a precautionary measure following a lengthy and complex cardiac procedure via the jugular vein. I was an ICU patient for 5 days and intubated for 1–2 days. I had a central line place in my neck delivering antibiotics and other important medication. I have a horrific history of infection having had sepsis, which travelled to my heart resulting in endocarditis. The endocarditis destroyed my mitral valve; as a result, I'm always cautious of possible infection.
After 3–4 days in the ICU, I noticed that the central line felt warm, a sure sign of an infection brewing. I was immediately suspicious and mentioned it to my nurse. She stated that, as it was a ‘bank holiday’, the best she could do was swab the site, send it to the lab and wait 2–3 days for a result. I wasn't happy with her response but let her take a swab. What she didn't know is that I never give up that easily even when I'm lying in a hospital bed. Waiting 2–3 days means any infection would be circulating in my bloodstream by then.
There was another nurse, who I had observed for some time, caring for the patient opposite me. She appeared to be very experienced. Her patient was receiving extra-corporal membrane oxygenation, and the nurse was constantly talking with her patient. I managed to get her attention; I explained my concerns over the central line, possible infection and my very real history of septic shock and endocarditis. After examining the site, she agreed with my observation and alerted a nearby anaesthetist. The central line was immediately removed, and the anaesthetist inserted a canula into my hand because I still needed intravenous medications. Had they waited 2–3 days, they could potentially have been dealing with something far more serious. We all know that prevention is always better than cure. I don't know why my own nurse was reluctant to take the necessary action.
Regardless of your level of experience, please don't dismiss a patient's concern. Patients with long-term health conditions are often experts in their own conditions. They have picked up a lot of knowledge during their patient journey and their instincts are often spot on. They will be able to tell you what is normal for them and provide a good history. Their ‘normal’ won't necessarily reflect what's in the textbook, and that's okay. When a patient raises a concern, please take it seriously and, if needed, seek the opinion of their specialist team. Due to my medical history and cardiac condition, my risk of infection is high, and the potential consequences could, according to my specialist team, easily be fatal. The source of my sepsis (in 2003) was never established and could literally have been ‘picked up’ anywhere. When you are ill and in receipt of copious amounts of sedatives and other strong drugs, it takes an enormous amount of effort to do even the smallest thing, including stringing together a sentence. It is a time when even the most confident person is very vulnerable. You should not have to think about advocating for your own safety as a patient.