Clinician Profile – Peter Jones, Australia’s first epilepsy Nurse Practitioner

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In Australia, around 250,000 people are currently diagnosed with epilepsy – that’s over one per cent of the population so chances are most people know someone with the condition. While epilepsy is common it is widely misunderstood. For example, the majority of people relate epilepsy to convulsive seizures, but it can take many forms and affects people very differently. Epilepsy is a neurological disorder and seizures are caused by a disruption of the electrical activity in the brain.

Epilepsy is not necessarily a lifelong disorder. Some epilepsies are age related and can be outgrown, and up to 70% of people with epilepsy become seizure free with medication.

And it is certainly no barrier to achievement – Julius Caesar, Napolean Bonaparte, Socrates, Tolstoy, Charles Dickens, Tchaikovsky and Beethoven are all thought to have had epilepsy, alongside contemporary well-known figures including Prince, Lil Wayne, Hugo Weaving, Danny Glover, Lance ‘Buddy’ Franklin and rugby league legend Wally Lewis.

CKN spoke with Peter Jones, Australia’s first Epilepsy Nurse Practitioner working at Princess Alexandra Hospital (PAH), about his mission to improve access to care for epilepsy patients in the Metro South Health community.

Photo of Peter Jones, Australia’s first Epilepsy Nurse Practitioner working at Princess Alexandra Hospital

Peter began nursing in the late 1990’s, studying at the University of Southampton, UK. In 2002 he moved to Australia and began working at the Royal Brisbane and Women’s Hospital in general medicine as a Registered Nurse. Peter Quickly developed an affinity for critical care, moving to the Intensive Care Unit where he completed a postgraduate degree in ICU nursing at QUT. It was here that he began to develop his interest in neurology and epilepsy.

In 2007 Peter transitioned to a management role, taking up a position as a nurse unit manager while developing a new model of care and ward in rehabilitation and sub-acute services. By 2010 he had moved to the manager’s role in the department of Neurology, overseeing the epilepsy telemetry services.

In 2015 Peter moved facilities to the Mater Hospital Brisbane, as an integral member of the new Advanced Epilepsy Monitoring Service. Here they began therapies used for the first time in Queensland such as stereotactic EEG. 

He has since completed his Masters of Nursing Science (Nurse Practitioner) studies, to become the first NP specialising in epilepsy in Australia. Peter now works at both the Mater Hospital Brisbane, and the Princess Alexandra Hospital (PAH), in their neurology outpatients department. 

Peter’s work has been distinguished and well-recognised, awarded CNC of the year for the Mater 2016 for his work in epilepsy and was part of the winning the “team of the year”, being awarded the health practitioner of the year award 2017 by Epilepsy Queensland, and was nominated for the CEO mission award at the Mater 2017. He had previously won quality initiative awards at the RBWH for his work in a model of care with epilepsy.

My role as an Nurse Practitioner in epilepsy

The role for me was a long time in the making. There are many organisational aspects that need to be addressed prior to studies even starting, and organisation support and a governance framework needs to be provided. For me that was at first from the Mater, with the PAH also providing some very welcome backing in late 2017. Medical (clinical) mentorship and oversight is essential and I have been very fortunate to have that offered at both facilities.

My roles commenced at both facilities in February of 2018. My primary focus at each facility is slightly different. At the Princess Alexandra Hospital I have 3 sessions per week to look at the long wait-listed seizure referrals. I see my focus at the PAH being delivery of a tailored clinical service that provides a reduction in wait times for those that have been long wait-listed. Previously people could wait a year or more before seeing a neurologist. I also focus on inpatient monitoring and staff education.

At the Mater, my role is more surgically focused, with clinics to review and to provide assessment for surgical work up. I am a point of contact for all individuals under our care for remote advice and medication management.

The NP role in general affords a fantastic scope for those that see their carer following a purely clinical pathway. The NP can diagnose, prescribe, order relevant pathology and radiology and refer to other service providers (such as allied health or medical sub-specialties). It is often referred to as a junior doctor replacement role, which it absolutely is not. It is however the highest clinical role in nursing. We see the patient from a nurse’s perspective, through a different clinical lens and focus heavily on quality of life and looking at things such as the impact of the side-effects of medication. As such can work in close collaboration with our medical colleagues to deliver true holistic and contemporary care.

My role is as the first NP in epilepsy is quite a hat to wear, and currently I’m a party of one! I hope for this to change in the near future. It is an exciting time though, as it does present me with the opportunity to demonstrate what the role can offer and to be able to constantly redefine the role responsibilities in line with the standards of practice that govern NPs.

A day in the life

Our services are growing, with unlimited referrals to be seen at the PAH (the purpose of my role being created!). At the Mater, we have now over 600 individuals that we currently treat with referrals coming in each day.

On most days, I have either one or two clinic sessions where I will see a mix of patient presentations, from known refractory epilepsies to new first seizures. Each clinic normally accommodates about 4-6 patients. Here I will diagnose and treat.

In between clinics, I respond to emergent calls from patients in the community or liaise with organisations to support people with seizures. I also spend time each day categorising the acuity of our current cases and book inpatient cases for monitoring.

For patients to be referred to my clinic, the referral needs to be triaged as clinically appropriate. Currently that is either myself or a neurologist/epileptologist that does this. The significantly unwell or those with some more complex comorbidities will see a neurologist first for review before coming to my clinic.

Advocating for my patients

The challenges my patients face are extreme. Seizures and epilepsy are a stigmatising diagnosis. Most diagnosed people feel socially maligned, and often feel unable to undertake normal life activities due to fear of embarrassment if they were to have a seizure in public. There is a very high prevalence of depression and anxiety disorders with epilepsy. Patients with ongoing seizures (30% of all sufferers) cannot drive a motor vehicle. This is a major contributor to a detrimental quality of life in developed countries. Many people also struggle with relationships. The medications prescribed all carry side effects, ranging from weight gain, lethargy, hair loss, mood disturbances and nausea, to life-threatening skin reactions.

My role here is to not pretend to know what this is like for my patients, but to help rationalise and endorse their feelings. I work with each person to look at the triggers, to triage the significance of each impacting factor, and to seek a resolution. With medications, I work closely to help manage side effects through dose management or medication substitution.

"I truly believe that nursing is the best job in the world"

My personal with philosophy with patient care is that you need to want to do the job to be truly effective. When you want to do something (and it’s not just a means to an end) you tend to deliver, because your heart is in it. Passion for the work that I do, I think, is my greatest asset. I truly believe that nursing is the best job in the world, and that I have the best job in the building as an NP. I want the best each day, and look forward to coming in. I hope that shines through. Mine is a position that I enjoy thoroughly.

Evidence based practice should be, and is, the cornerstone to all that we do. Without evidence we are guessing. Research is primarily driven by a question, but this question is based, or should be based, on a clinical conundrum – which is evidence that the current modality or therapy could be improved! We as a group meet weekly to discuss evidence in relation to practice, and have a medical librarian attend. She is wonderful at assisting with journal searches.

I use CKN, and find the most valuable resources (the ones that I am most familiar with!) to be CINAHL, MEDLINE Complete, PubMed and Cochrane. I used these research resources heavily last year when finalising my studies, but also recently when looking at some contemporary research ideas I have around driving assessments and cognition with controlled epilepsy. Other resources that I use a lot are eTG Complete (I love the guideline for management as referential pathways), and AMH which is an invaluable resource.

It’s such a pleasure and a privilege to do what I do. I love the autonomy that my role has given me, and the need for teamwork that is created by the nature of what I need to do. The PAH have been immensely supportive of my role. I am grateful to have been exposed to such a forward thinking and positive medical department. My medical lead at both PAH and the Mater, Dr Sasha Dionisio, is an example of what a specialist should be - forward thinking, supporting and driven. The role would not exist without his unwavering support.