International Nurses Day 2022: Q&A with a Parkinson’s nurse

To mark International Nurses Day, Emma Edwards, Parkinson’s Nurse Specialist and Suicide Awareness Trainer at Livewell Southwest, shares her experience of providing care to people with Parkinson’s.

Tell us about your role and how you support people with Parkinson’s

I have been a qualified nurse since 1997 with a background in mental health nursing and have worked as a Parkinson’s nurse specialist since 2010. I am currently doing 2 roles - suicide awareness trainer and Parkinson’s nurse. I am usually the first point of contact for people with Parkinson’s and their families.

Parkinson’s nurses do a lot of medication management to better manage motor and non-motor symptoms (NMS); as I’m a nurse prescriber that makes things a lot easier. I offer education to people with Parkinson’s and their families as well as to colleagues I work with, signpost to other services and work as part of a wider multidisciplinary team (MDT).

What's the best thing about being a Parkinson's nurse?

I can really make a difference. A large part of the role is medication management and if it was only that, I would have stepped aside years ago, but there is so much more to the job. I work collaboratively with families and am part of the MDT, which is really important for someone with Parkinson’s. We create an agreed plan together. As it is a long term condition, I’m involved with people and their families for years and years. Having a therapeutic, long lasting relationship with the people I work with and support is the best thing.

I’ve also liked learning about new technology we are introducing such as the Personal KinetiGraph (PKG) smartwatch as part of the home based care pathway in Plymouth. Also developing an app for monitoring non-motor symptoms with Plymouth University called NMS Assist which should be piloted in the very near future.

What are the biggest challenges of being a Parkinson's nurse?

Not having enough time, even when I’ve worked full time in the role. I do have someone covering hours while I'm on secondment but it’s a very busy job that requires a lot of prioritising. I try to avoid late replies to messages, but sometimes you have 30 messages and have to make a clinical decision on who needs the attention first.

There’s a huge caseload for Parkinson’s nurses, I know a colleague with 700. Other specialist nurses, such as a community psychiatrist nurse might have a caseload of 60 to 70. Plymouth has 2 Parkinson’s nurses for 500 patients; this has grown from under 400 in 2019.

How did you join the Excellence Network and what are the benefits you get from it?

I joined a few years ago after encouragement from Dr Camille Carroll and a patient on my caseload who had been to a local Excellence Network meeting and really enjoyed it. They told me I must go along. I love that it includes people with Parkinson’s and their families as well as professionals, which is very important. 

I’ve enjoyed the past few local meetings I have been to; they have been really informative and a great opportunity to network.

The professionals section of the Parkinson’s UK website has great resources on there. I found out about the "Managing bone health and fracture risk" online course which was really interesting to complete and I was able to incorporate that knowledge into my day to day role.

I like the Excellence Network's online collaboration platform, Basecamp, and am part of the Mental Health Hub's forum on there. I was thrilled to present at the Excellence Network Mental Health Hub's online conference last year which was a great experience. 

I hope to create the first Parkinson’s community psychiatric nurse role in the future as mental health support can often be difficult to access for many reasons for people with Parkinson’s. I shared the idea on Basecamp and have already had offers to share advice and opinions while this develops.

International Nurses Day 2022 has a theme of invest in nursing and respect rights to secure global health. What does that mean to you?

Many nurses, like me, feel passionately about investment and continual improvement in nursing. Nurses’ pay needs to be addressed before we lose too many colleagues. If you want to attract people to the profession, pay them better. Claps on the doorstep were welcome but did not pay the heating bill.

My father was a nurse tutor and I’m currently in a training role. This makes me acutely aware that alongside the need for investment in pay, there also needs to be ongoing investment in workforce development and education. 

A quote I love from Joe Biden: “Don’t tell me what you value, show me your budget and I’ll tell you what you value”.

In terms of global health, we have seen during the pandemic how health systems have coped, or not. It’s shone a global light on terrible inequalities in healthcare and we have to learn the lessons right away that might mean changes in practice. 

It’s not always about working smarter with what you have, it’s about investing in future care for people, especially for those with long term health conditions like Parkinson’s.

What advice would you give to anyone thinking of becoming a Parkinson's nurse?

Do it! 

If you see a vacancy, call up the local Parkinson’s nurse team and have a chat with them. I did that, and I was able to shadow one of the nurses for a day. It gave me a real insight into what I was applying for.

Link in with your local Parkinson's Excellence Network group; you don’t have to be in the profession and it’s really useful to be part of.

Parkinson’s UK has a great website to give insight to what Parkinson’s is and the Professional pages are really interesting.

The Neurology Academy's Parkinson's Academy is also incredibly useful and runs courses to improve your knowledge on Parkinson’s, such as their Foundation and Advanced MasterClass or their webinars.

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