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My Story as a Headache Specialist Advanced Nurse Practitioner

I am Susie and I am currently the Advanced Nurse Practitioner and Lead Nurse for Headache and Neuromodulation at The National Hospital for Neurology and Neurosurgery, part of UCLH NHS Foundation Trust.

My professional journey includes a whole range of nursing experience from auxiliary, critical, care to frontline ward work, academia, research work and also had an opportunity to do some international speaking engagements.

I left the Philippines to come to UK in 2009 at the age of 23 years old. I was part of the first batch of International nurses recruited from the Philippines by my Trust.

Arriving here in the UK as 23 years old girl, leaving a 1-year-old child, the experience was a huge cultural, personal and professional shock for me. Everything was different, but it was a challenge that I warmly welcomed. It is truly a privilege to have the opportunity to study whilst working, and I grabbed every opportunity given to me.

In the 21 years of working at the same NHS Trust, I worked in various roles from being a health care assistant (equivalent of band 2 back then) to being a senior nurse until I decided to leave the ward to become a headache specialist nurse in 2008.

I started by doing the teaching and assessing course, then took on other courses such as HDU course, tissue viability and neuroscience nursing course. I completed my Master’s Degree in 2018 and have recently started my PhD in Neuroscience, with my primary research focus on neuromodulation in headache.

Aside from this, I am also an active member and the current Secretary of the Filipino Nurses Association - UK.

What does a Headache Specialist Nurse do? What's your typical day like?

Headache Nursing specialism is probably something that not everyone is familiar with. I know so because I was in exactly the same position when I first heard of this many years ago.

The headache speciality involves looking after patients with Primary Headache Disorders from the most common cases such as migraine and other rarer headaches belonging to the group of headaches collectively known as Trigeminal Autonomic Cephalalgias, which includes cluster headache and paroxysmal hemicrania. Our work is broad and versatile, focusing on working with the patient, and aims to provide a positive outcome.

As an ANP (Advanced Nurse Practitioner) in Headache and Neuromodulation based in a tertiary headache centre, I see patients both in virtual clinics and face-to-face clinics. As a headache nurse, we are the first point of contact of the patients between their appointments with the neurologist. During these telephone consultations, we provide best evidence-based information, advice and support. We also discuss their diagnosis to help patient better understand their condition, optimising acute and preventive treatments, titration of medication and advise on side effect and providing support to patients who are weaning from pain killers or entity called “medication overuse”.

From Tuesday to Friday, I run clinics but each day would have a specific purpose or set of patients.

My work week starts on a Tuesday where I run my neuromodulation clinic at our Daycare Unit. Here, I see patients with implanted Occipital Nerve Stimulator, which is a peripheral Neurostimulators for headaches. I assess the patient, interrogate and program their devices.

Wednesdays would be another clinic day but in this day, I see both new and follow-up patients. All of my patients have been seen or referred by a Neurologist. For the New patients, I take their complete history, assess and make a diagnosis which gets confirmed by the Consultant. I then discuss the treatment options with my patient and then provide a treatment plan. I also do a lot of patient education to help the patients and their families understand the condition through education and empower them to feel confident in managing and treating their headache type.

Thursday is nurse-led procedure clinic day where I run Multiple Cranial Nerve Block clinic. I am particularly proud of this service as I was also one of the first nurses in the UK to be trained to do this procedure as it was previously only done by Consultant Neurologists. I have since trained other headache nurses and doctors to perform this procedure since then. The clinic model has since been replicated to other headache centres in the UK, which means better treatment access for people with headaches.

I also run the nurse-led Botox clinic for chronic migraine, which was also the first nurse-led service Botox clinic in the UK. Similarly, I found myself blazing the trail, being the first nurse to achieve competency in performing Botox in chronic migraine.

Friday is for the neuromodulation clinic. These are for patients with implanted Deep Brain Stimulators for headaches (DBS). Again, I assess the patient and program the deep brain stimulators and activate the DBS post-surgery.

I am also involved in other activities, from contributing to policymaking aspects at a National level, I have been appointed a Topic Specific expert member of the National Institute for Health and Care Excellence (NICE) Guidelines for Headache(CG-150). I also play an active role in research and academia and have published numerous papers in international peer-reviewed medical journals like Brain, Cephalalgia and Lancet- Neurology. I also speak and presents nationally and internationally at Conferences and Lectures.

Aside from being a speaker at National nursing and headache conferences, I have also been fortunate to be invited as international speaker and lecturer abroad including Norway, Sweden, Italy, Czech Republic, Germany, France, US and parts of Asia.

How can one become a Headache Specialist Nurse?

To become a headache specialist nurse, it is ideal to complete the neuroscience nursing course. In my case, I had to complete this course and also was part of the first cohort of nurses and doctors who completed the Masters of Headache Disorders from the University of Copenhagen in Denmark and recently started my PhD.

Aside from academic qualifications, you need to have the passion and a solid drive to advocate for patients with headaches to be an effective headache nurse specialist. As the role of the specialist headache nurse is a non-traditional one with expanding boundaries, you must be versatile, organised and well-rounded as the role continue to evolve and goes through the development process. In addition, you need to have the knowledge and skills to work effectively both as part of the team and autonomously, especially when running your own nurse-led clinics.

The job can be challenging but extremely rewarding, especially when patients come forward expressing how we positively touched their lives. The best preparation to become a headache nurse specialist is to have the right experience together with a suitable academic background, including a neuroscience nursing course.

Why did you choose this area of Nursing?

To be honest, I was not really specifically eyeing at this role. I was lucky that this opened when I was looking for my next role. I purposefully put my career on hold to care for my children. When the time came that I was ready to take on a more senior and independent role, I stumbled upon the Headache Specialist Nurse job advert and applied for it. I got the job and I have never looked back since. I then got promoted to become an Advanced Nurse Practitioner then the Lead Nurse for Headache and Neuromodulation. I can honestly say that I love my job and I feel so blessed to do something that I am so passionate about.

Being a headache nurse is extremely rewarding. I love my job as no two days are ever the same. Being a headache specialist nurse allows me to meet amazing people and make a difference in the lives of people with highly disabling headaches.

What are the challenges of a Headache Nurse Specialist?

Even though headache disorders, particularly migraine, are very common and highly disabling condition, clinics or centres offering services for headaches still remain to be geographically patchy. This imposes a challenge as it also means there are still not enough headache clinics and headache specialist doctors and nurses available. For instance, I am getting patients from various places in the UK. Some have to travel hundreds of miles to access the care they need and deserve.

As a consequence, this places a significant pressure on headache nurses to keep and manage waiting time. Other challenges that I encounter includes managing people's expectations as well as overcoming barriers to care. Professionally, I feel that the headache nurse specialism continues to be not well recognised. I still encounter fellow nurses and other health care professionals questioning the need for headache nurses when it's just a "headache", and I always find myself the need to explain justify the need for headache nurse specialists.

Any Advise to our fellow Nurses?

My first advice is to open and widen your horizon. Do not be afraid to try out or venture the unknown. Just because a particular career path or speciality sounds unusual or not so popular does not mean that it's not for you or its not worth considering.

I entered the "world of headache" only wanting for a change but I get to experience more than what I wanted and expected. I have witnessed how much difference we make to patients' lives and how much promising and vast this role provides when it comes to professional development. Right now is truly an exciting time to be a headache nurse, with the dawn of new and novel treatments like CGRP monoclonal antibody and non-invasive devices. If you want some change, consider this specialism!


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