Emma Edwards, Parkinson’s Specialist Nurse & Spotlight YOPD

An interview with Emma Edwards, Parkinson’s Specialist Nurse & Spotlight YOPD on February 4, 2024 by George Ackerman, Ph.D, J.D.

Presenting a poster on supporting care partners at the MDS congress in Madrid in 2022.



Emma has been working as a nurse in the UK for over 30 years, she qualified as a mental health nurse in 1997. She has worked in many psychiatric care settings over the years but took a different role in 2010 and became a community Parkinson’s specialist nurse. She currently covers an urban and rural patch of West Devon and Plymouth. She has been involved in many different research projects over the years, the most recent being how digital technology can support people with Parkinson’s at home. She is currently a recipient of a Chief Nurse Research Fellowship. Emma sits on the Neuroscience Nurse Committee at the Royal College of Nurses, as well as a Trustee at the UK based charity, Spotlight YOPD | UK Young Onset Parkinson’s Disease Charity. Her current research focus is Suicide awareness and prevention in Parkinson’s, and lectures across the UK on this subject.


Please tell me a little about your background:


I unknowingly began my nursing career the day after my 18th birthday! I was intending to just spend my gap year working as a nursing assistant in the local psychiatric hospital (where my nurse parents had met and worked) , before going off to University to study acting. However, I soon realised that I preferred nursing, and changed my educational path.


Teaching people with Parkinson’s about our new innovation supported by digital tech: Home based care. 2019.


Can you tell me more about your organization?


I work for an independent Social Enterprise in Plymouth in the UK called Livewell Southwest – Livewell Southwest | We support people to lead independent, healthy lives. Our services are commissioned by the NHS to provide community care to residents in the area. They are a fantastic organisation with values about integrated care delivery that align with my own.


What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?


In 2019, one of my patients with Parkinson’s, took his own life. It was devastating for his family and left me in total shock. How could I have missed the signs being an experienced mental health nurse? So, I have spent a long time improving my knowledge in this area, I even took a secondment for 2 years in the Suicide prevention team in my organisation to better understand all the areas on this complex issue. Although suicide death rates for people with Parkinson’s are thankfully low in the UK, we still have around on average 4-5 a year. I now research this area and offer training for staff to better assess for this in their consultations.


What type of goals do individuals with Parkinson’s have when working with you?


I think a lot of the people I work with just want to live the best life they can. They want to feel mentally well, and they want to ensure their medications and treatments plans are optimised. My role as a Parkinson’s specialist nurse is to be the  first point of call for people with Parkinson’s, and their supporters, if they have any questions or concerns about any aspects of their condition.


What type of training and how long are the programs?


We offer lots of different support for people with Parkinson’s across the area I cover. It includes local exercise classes, support groups, newly diagnosed workshops and speech and language groups. The time length of the classes is different, so for example the Parkinson’s exercise classes are run every week, whereas the vocal groups run for 6 weeks, 3 times a year.


What effect can it have on an individual with Parkinson’s?


I think finding your tribe is so massively helpful in meeting the challenges of this condition. Having a good team of professionals around you is vital. I think also having peer support is invaluable. As Dr Brene Brown often says, ‘we are hardwired for connection’, and connection with others is essential for good mental health.



Teaching at a conference on Suicide in Parkinson’s. 2019

What would you like to see as a future goal for your programs?


I would love to continue my research in suicide prevention and mental health  and maximise this with the people I work. I am so eager for mental health needs in this population be deemed as important as physical needs. I’m a big advocate of talking therapies and I think we don’t encourage this enough in people with Parkinson’s, but also, I don’t think we quite know as professionals what type of psychological interventions work best. More research needs to be done in this area for sure.


What events do you participate in?


This year, my organisation is promoting World Parkinson’s Day. We are going to make an educational awareness film about younger people with the condition. I’m also keen to promote awareness of young onset Parkinson’s with the SpotlightYOPD charity I work with. Our next event is an online YOPD support group. I recently participated in my first podcast with Parkinson’s UK, it was all about managing mental health in Parkinson’s.


How does this also assist the caregivers?


I run a monthly online care partners group and have done for the last 2 years. I am forever humbled by their input and desire to support each other. I co-facilitate this group with a local Carers organisation, who support anyone who has a caring role.


How can someone get in touch?  What is your website?


I am available through Linkedin, or through my professional email address of I am also on X (formerly known as Twitter), Emma Edwards @ kernowpdnurse. Or through the charity,


How can others also become advocates for awareness?


In the UK, there are some brilliant charities that are always encouraging of advocacy in Parkinson’s. My favourites are Parkinson’s UK, Cure Parkinson’s Trust and, of course, SpotlightYOPD. All offer something slightly different, but all strive to improve the lives of people with Parkinson’s and their families. They are all have great websites and are on social media if anyone wants to find out more.


In your opinion what is the key to effective advocacy?


Patience and persistence.

Getting ready for the podcast in 2023 – mental health awareness in PD for Parkinsons UK.


How can we better fundraise to support a cure for Parkinson’s?


There are so many worthy causes competing for our financial support, so it’s about standing out from the crowd. I think human stories help link people to their wallets!


What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?


Living in Cornwall, I’m lucky enough to be a close drive to the sea. I love a walk on the beach with my husband, kids and my dog. If a pasty pub lunch is at the end of this, then all the better!


Why should people who don’t have Parkinson’s care about this?


Parkinson’s doesn’t discriminate who it effects. I’ve worked and spoken to so many people who hadn’t heard about the condition, so were not aware of the common signs when it started to happen to them, their loved ones or their patients. Awareness is keen in early recognition and treatment.


Have you had any family members or relatives affected by Parkinson’s disease?




If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?


I think it’s a sentiment that even in the scariest, loneliest, challenging days, there are always helpers. Look for the helpers. There is always someone that cares and will pull you out of the darkest hole or situation.  This is not just for people with Parkinson’s and their supporters, but for the professionals working in this field too.


If you had one song that would tell us more about you or represent your life which song would it be?


Three Little Birds by Bob Marley. The chorus is a phrase that my late mum used to say to me all the time, ‘don’t worry about a thing, because everything is going to be alright’. And most of the time, it really is.


Me on the national BBC news discussing digital technology in Parkinson’s.



Displaying our Home based care poster in 2020.