At Saint Michael’s, our specialist nursing team provides expert, compassionate care for patients with complex conditions like motor neurone disease. We spoke to Julie, Clinical Nurse Specialist, about her role and what makes supporting patients and families so meaningful.
What is your role and who do you work with?
I’m a Clinical Nurse Specialist. I work within a multidisciplinary team including a physiotherapist, occupational therapist, speech and language therapist, dietician and neurologist to support people locally living with motor neurone disease (MND). We meet as a team once a month, see patients in the clinic, which is based at Saint Michael’s, and also visit them in their own homes. Volunteers from the Motor Neurone Disease Association also join us, so it’s a really collaborative approach.
How does your team work together to support patients?
We discuss every patient beforehand and reflect on complex cases. I usually do the first visit, then refer to colleagues as needed. Often a patient will have three or four of us involved, and we all communicate closely. It’s one of the best teams I’ve ever worked with in my 45 years of nursing.
When does your team get involved in a patient’s care?
We usually start once a neurologist has confirmed a diagnosis. Sometimes the patient has been seen in a different context, but we only take over care when there’s a confirmed diagnosis.
How long have you been with Saint Michael’s?
Around three years in total. I covered originally for 18 months, then returned after a break.
What are the main challenges you face?
Funding and home adaptations can be challenging. We preempt needs like wheelchairs or voice banking so patients don’t reach a crisis point. And emotionally, caring for someone from diagnosis through to death is intense, but it’s also incredibly rewarding.
What has been your most memorable day at Saint Michael’s?
The day I got the role. I had retired and left a stressful job, so coming back to patient-facing work after twenty years was scary. Being offered the role on the spot felt like the start of an amazing journey. I love this job.
Why is free access to care important for your patients?
Nobody should have to pay for care. People with neurological diseases deserve equality and the holistic care that hospices provide, free at the point of need.
Like Julie, our team makes a real difference every day. Every gift helps to make a real difference to the care we provide.
