12 May 2021 marks International Nurses Day. This year, the overarching theme for the day is Nurses: a voice to lead, and the sub-theme is a vision for future healthcare.
Currently there are 465 Parkinson’s nurse specialists in post across the UK, providing expert support and care to people with Parkinson’s.
To celebrate International Nurses Day and pay tribute to all of our amazing Parkinson’s nurses, Emma Galos, Parkinson’s nurse specialist at Great Western Hospitals NHS Foundation Trust, shares her experience of being new in post during the height of the COVID-19 pandemic, what the best and most challenging part of her role is and the 3 key things she has learnt.
Question time with Emma Galos
Tell us your experience of joining as a new Parkinson’s nurse during a global pandemic. How have you found it?
It’s certainly been an experience! I was initially due to begin in post in April 2020 but the arrival of Coronavirus delayed me starting by two months, as I had to stay on in my previous role as Ward Manager on a stroke ward, to help deal with patients contracting COVID-19 and staff being redeployed.
Once things had calmed down, I began my role as a band 7 Parkinson’s nurse in June. By this point everything was taking place remotely so that was a new experience too. On reflection, I think everything being online and over the telephone actually made it easier for me to adapt into the role and make sense of all of the questions I needed to ask during my appointments with patients. By the time I began seeing patients face-to-face, I felt much more settled and knew what I needed to do, and it’s been really nice to finally meet my patients in person and put faces to names.
What is the best thing about being a Parkinson’s nurse?
I really enjoy unpicking someone’s life to try and identify what I can do to make it better for them. We know that Parkinson’s is different for each person and so the only way to get to the bottom of a person’s issues and identify what the problem is, is by asking lots of questions and working through their history. This is great for me as I love speaking to new people and finding out about their lives! I describe it as putting pieces of the puzzle back together to help make them better.
What has been the biggest challenge of joining a Parkinson’s service during the pandemic?
Exactly that - joining the service at the time that I did. It was quite a challenging period as the service felt fairly disjointed and staff were working all over the place, so I couldn’t just go up to a colleague like I usually would to ask a question. And as expected, many of the patients were extremely scared about the virus and how it would impact them and their Parkinson’s. I had many people asking me questions that neither I or anyone could answer as things were still so unknown at this point, but because I was unable to give them a clear answer, it felt like I was letting them down.
But of course that didn’t last forever and as things slowly started getting back to normal, it has got a lot easier. It has also helped that I now have a much clearer understanding of my role and have been able to build better relationships with other teams and services. For example, I am now part of the multidisciplinary team at our local memory service in Wiltshire and have done some Parkinson’s training for the staff there which has helped them develop more knowledge around the condition. It’s also led to us carrying out some joint visits which has benefited the patients.
What are the key things you have learnt?
Definitely lots of things! But to sum it up into 3 key points, I would say:
Firstly, that Parkinson’s is very complicated and there’s not one rule for everybody. Everyone is different and you’ll never meet two people with Parkinson’s who are the same. So that’s something to always keep at the forefront of your mind, as the support and care you provide will be different for each person - from managing their symptoms to their medication regime. I mean, it makes sense as it would be pretty boring if we were all the same!
Just how many non-motor symptoms in Parkinson’s there are (over 40) and particularly, how much constipation affects everybody. I always tell my patients to look out for 3 things: constipation, dehydration and infection, and tell them that if they have any one of those then we need to get it sorted first before sorting anything else out.
Exercise! I’ve witnessed just how much exercise helps patients - particularly in deconditioned patients as a result of COVID-19. I don’t think I would have noticed it as much if it wasn’t for the pandemic, but I have now seen firsthand how much people have deteriorated from lack of activity and movement. I’ve also witnessed the incredible effect exercise has had on patients who have lived with the condition for many years. You almost wouldn’t know that they had Parkinson’s because the change in their symptoms is reduced due to regular exercise and physical activity. Also, exercise is really good for that constipation - our guts are lazy!
The main thing I’ve learnt is that you only discover these things by going through it. I’m almost grateful for having started my role in a global pandemic as I’ve learnt and seen so much through having to experience the extreme highs and lows.
What advice would you give to someone about to start a new role as a Parkinson’s nurse or considering it in the future?
I would say that if you like a challenge and like something that is really interesting - because you’ll never see two patients that are the same - then go for it!
For anyone just starting out in their nursing career or who is considering specialising in Parkinson’s later on, my top tips would be to read as much as you can and really listen to your colleagues and those with more experience. An unexpected positive of the pandemic is that everything is now online and easy to access. There’s been so many online webinars and free training taking place so that’s a great way to learn.
I also took part in the Excellence Network’s new Parkinson’s nurse online induction in the summer, and really welcomed the opportunity to virtually meet other new nurses and learn from those who have been in the role for a long time. All of the sessions could be re-watched at a later day which was a great help!
The overarching theme for this year’s International Nurses Day is Nurses: A Voice to Lead, and the sub-theme is A Vision for Future Healthcare. What do you view the role of the Parkinson’s nurse to be in the future e.g. 5 years time?
I think the role will be much the same as it is now but it’s likely to be a lot busier. We know that people are being diagnosed earlier and at a younger age so I think as the years go on, there will be more to do and more patients to look after.
There’s also likely to be long-term repercussions as a result of the pandemic. COVID-19 hasn’t just affected people living with Parkinson’s, but it’s also impacted all of those close to the person too. For some people, remote consultations have worked really well and are likely here to stay, but we know it’s not for everyone so there will certainly need to be some adapting. As I’ve said before, Parkinson’s is different for everyone and so the key thing is to ensure we are holistic in our approach and attending to each person’s individual needs.
Understanding the scope and value of the Parkinson’s nurse in the UK
Read the early findings from the Understanding the Scope of Parkinson's Nurse Specialists (USP) study in this blog written by Dr Katy McEwan, Research Fellow at Northumbria University.