How to process anxiety when your healthcare team changes
When good specialists move on, it can disrupt our world as sickle cell patients
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If you’re like me and have a good medical team, over time, you’ve likely grown attached to them. When you’re fortunate enough to have a competent and consistent team that genuinely cares about your health, those types of relationships matter in ways that go beyond doctor appointments.
That type of relationship can be a beautiful thing. Trust grows and care feels personal. You feel seen, and in moments when you’re struggling with an acute sickle cell crisis, they become your biggest advocates with other hospital departments.
I remember a conversation I had years ago with my psychologist. At the time, my then fiancé and I were house hunting, and I felt completely tethered to a particular area because of how close it was to my hospital. The idea of living farther away caused me anxiety, particularly due to the negative experiences I’d had at other hospitals when I moved to a different neighborhood with my sister.
I explained all of this to the psychologist, expecting reassurance. Instead, she offered me a different valuable perspective.
She advised me not to make major life decisions based solely on my current medical team. She explained that, just as I have a career, plans, and ambitions, so do the professionals who look after me. As much as they care, their paths may not always remain entwined with mine. Doctors move on, nurses change roles, and services evolve. It was a truth I understood intellectually but which was hard for me to process emotionally.
I don’t mean to say that we should disregard medical care altogether. Accessing a hospital with a well‑established hematology unit is important. Here in the U.K., sickle cell disease treatment services are concentrated in specific cities, and many hospitals outside those areas have only limited knowledge about sickle cell disease. Of course, I wouldn’t move somewhere like that. However, there is an important distinction between thoughtfully considering your medical needs as part of your overall quality of life and anchoring major life decisions to specific members of a hospital’s staff, no matter how exceptional they are.
Space for improvement
Recently, a consultant (a senior doctor in the U.K. healthcare system) who has been part of my medical journey for 20 years left the hospital where I’m treated. He wasn’t my consultant for all of those years, but he has been involved in my care since his days as a junior doctor. I remember the first day I met him and he facilitated my manual blood exchange. To say I am sad about his departure would be an understatement. He is compassionate, knowledgeable, and unwaveringly dedicated. I will miss him enormously.
Soon after that, another consultant also left, one of the doctors who was there when I had a sickle cell crisis while traveling in Scotland. Although he wasn’t involved in my long‑term care, he was a standout clinician who often stepped in at the most critical moments.
Their departures caused me anxiety. I wondered who would take their place. Would my new consultant understand my condition as well as they did? Would they be as compassionate? Will we get along? Will I feel safe?
As challenging as this moment feels, I keep reminding myself that I’ve been here before, and things worked out.
Many years ago, my hospital had just one clinical nurse specialist for sickle cell disease. The relationship we had was incredible. She understood me, and I trusted her completely. I was devastated when she left to work at another hospital. I remember that period vividly — the fear, the sadness, and the overwhelming worry about how I would cope. Would the new specialist be someone I could talk to? Would they be as competent and committed?
Fast-forward a few years, and the hospital now has four clinical nurse specialists. I get along with each of them wonderfully. They are skilled, compassionate, dedicated, and deeply patient‑centered. Upon reflection, I can see that the service not only recovered, but also grew.
The change, as frightening as it felt, created space for improvement. The team expanded. A couple apheresis machines were secured, which boosted the capacity for blood-exchange treatments. A day unit was built. Training on sickle cell management for emergency staff was developed. An improved inpatient ward for sickle cell patients followed. As a result, patient outcomes have improved significantly. What once felt like a loss ultimately led to progress.
I share all of this partly to encourage myself. I need a reminder that although a consultant who has been part of my life for two decades has moved on, good care can continue.
But I also share it for you. If, like me, you feel emotionally and psychologically attached to your medical team, try not to draw conclusions too hastily when changes happen. Give new staff members a chance. Be open. You never know, you may end up with something even better than before.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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