How Deep Brain Stimulation nurses are transforming Parkinson's care

Silvia Santoloce is a movement disorder specialist nurse at Southmead Hospital in Bristol. Her team was the first service in Europe to complete an activation for a patient receiving DBS adaptive therapy (aDBS).

We spoke to Silvia, who offered valuable insights into her role, the DBS journey for people with Parkinson’s and how she collaborates with other professionals to best support patients. 

Silvia is also a committee member of the Deep Brain Stimulation Nurse Association (DBSNA), the organisation setting the standard of care for DBS nurses in the UK. To find out more about their work, we also caught up with Russell Mills and Alison Leake, the Chair and Vice Chair of the DBSNA. Hear directly from Russell and Alison in our video interview below, as they talk us through how the organisation supports DBS nurses, the latest technology advancements and their relationship with Parkinson’s UK. Watch the video.

About the DBS nurse role

Silvia is part of a multidisciplinary team dedicated to providing specialised care for various movement disorders, including Parkinson's.

Her role oversees the entire DBS journey, from initial patient referral and activation to ongoing follow-up and ad-hoc adjustments to medication and stimulation settings.

Beyond core nursing qualifications, DBS nurses hold a specific set of skills and knowledge vital to their practice:

• A deep understanding of brain anatomy.
• Assessing and understanding bradykinesia, rigidity, and tremors.
• Knowledge of how DBS impacts Parkinson's symptoms.
• A commitment to staying up-to-date with rapidly changing technology.

Working with other Professionals

Collaboration is at the heart of the DBS team at Southmead Hospital. Neurologists, neurosurgeons, a movement disorders physiotherapist, the administrative team, as well as specialist nurses like Silvia all play key roles in the programme’s success.

Outside of the core team, they also frequently refer patients to other allied health professionals, such as physiotherapists and speech and language therapists.

Silvia finds it a source of motivation:
"I’m really motivated in being part of a team where each individual works towards the same aim, trying to smooth down patients’ Parkinson's symptoms as much as possible."

DBS technology: how it works

For health and care professionals considering referring a patient for DBS, understanding the technology is essential. Silvia explains:

‘’The procedure consists of implanting a device composed of 2 electrodes in the brain. The target area stimulated by those electrodes is decided by the multidisciplinary team.The leads are then connected to a battery, which most of the time is placed in the chest. This releases a current that is hoped will smooth down Parkinson's motor symptoms. The aim is usually a reduction in tremor, rigidity, and slowness of movement.

‘’It’s important to be aware of the risks as well as the benefits of Deep Brain Stimulation. We know that, unfortunately, it’s not a cure for Parkinson's, it won’t slow the progression of the condition and there might be some side effects associated with it. 

Empowering patients on their DBS journey

A lot of Silvia’s motivation also comes from empowering patients to take charge of their own treatment experience:

"They start a journey with us, and our job isn’t just about tweaking the stimulation or changing the medications, it’s also about equipping patients with all the information they should be aware of, and encouraging them to have an active role in their advanced therapy journey."

A particular highlight for Silvia in her career was witnessing the patient transformation after taking part in her first DBS activation:
"Definitely seeing how and also hearing from the patient how their quality of life can change, their ability to do things that they weren’t able to do before, is something that stands out for me.

‘’This brings up the crucial point of setting realistic goals with patients. This helps not just us to understand in which direction to go, but it also helps the patient have a clear idea of what can be achieved after the procedure. Whether that’s moving in a smoother way, attending more social events, having less unpredictability of their "off" times, or simply being able to drink water without spilling.’’

The DBNSA: setting the standard of care for DBS nurses

Silvia is also a champion for the DBSNA, an organisation committed to establishing standards of care for deep brain stimulation nurses in the UK and internationally.

For the last decade, the DBSNA has led by example and helped keep professionals informed about the latest technologies and research in the field.