A legacy of care: marking 35 years of the Parkinson’s nurse role

Imagine a world without Parkinson's nurses… where people with Parkinson's have no continuous point of contact to help them navigate their condition, where they have to wait a whole year before talking to a clinician about their medication and symptoms, no one to turn to, no quality of life.

But, this is not our world.

In our world, the Parkinson’s specialist nurse role was created 35 years ago and since then, the care of people with Parkinson’s has improved immensely.

Going above and beyond

Nurses don’t only support patients with their motor and non-motor symptoms, they wear many hats and offer support in other aspects of patients’ lives, outside of their role. 

We heard from Suzi, who in addition to living with Parkinson’s, has been diagnosed with spina bifida. Suzi’s bladder pump stopped working and would require major surgery to rectify the problem. Her urologist was hesitant to undertake the surgery, due to possible implications from having Parkinson’s. Feeling helpless, Suzi decided to reach out to her Parkinson’s nurse, Coral:

"I shared my concerns with Coral, who was of the opinion that no one can predict the speed of deterioration with Parkinson's. She fully supported me in my desire to regain continence, advocated on my behalf by liaising with my urologist and pushed for me to get the surgery. I am thrilled to say I have been given a date for the procedure to take place.

I am utterly convinced that without the support and influence from Coral, I would still be fighting my corner for this surgery."

Using their varied skill set, nurses also take on service improvement projects for their teams, continuously look out for learning opportunities, network at events, take part in research and volunteer their time to offer their expertise to the community and the Excellence Network.

A key role within the multidisciplinary team  

Parkinson’s nurses are an important part of multidisciplinary teams, often being the glue that helps services run smoothly and keep patients’ needs at the forefront of every decision. Coming from a different role, recently appointed Parkinson’s nurse Elisabete Marques, explains how she now has the opportunity to improve overall care for Parkinson’s patients:

"You’re able to make a connection between the person with Parkinson’s and other healthcare professionals, and start linking everything together. I’m in a privileged position, where I can hear what patients have to say and advocate for them by amplifying their voice in meetings and conversations with other health professionals to drive change."

Marking 25 Years of the Parkinson’s Disease Nurse Specialist Association (PDNSA)

As well as it being 35 years since the first Parkinson’s Nurse, it is also the 25th Anniversary of the PDNSA. Their conference on 17 and 18 October was the perfect culmination of these celebrations. The 2-day event featured talks from a range of healthcare professionals from multidisciplinary teams across England and Northern Ireland. Katherine French, Head of Service Improvement and Grants at Parkinson’s UK also featured on the programme. She has long led collaborations between the charity and the PDNSA, and presented a look back at the milestones the 2 organisations have achieved together over the last 25 years and finished with an update on exciting developments to come.

In between talks, there were lots of opportunities for delegates to network and reflect on 3 decades of hard work and perseverance. The Excellence Network team was on hand to chat through the support and resources we offer Parkinson’s nurses. We used this time to show gratitude and presented each of the nurses with a gold glitter brain badge as a gesture of our appreciation for all the hard work and support Parkinson’s nurses offer people living with the condition.

Asking nurses to think of 1 word to describe the role and write it on a piece of card, we got many wonderful results! From 'Fantabulous' and 'Adaptable' to 'Determined' and 'Irreplaceable', it was clear there’s no 1 word that could do the job, resulting in an impressive wall of inspiration that hopefully fuelled attendees with motivation to keep going.

Clockwise from left to right: Emma Briggs, Parkinson's Nurse Specialist; Katherine French, Head of Service Improvement and Grants; multidisciplinary teams conference panel; Tracey Smith, Parkinson's Nurse Specialist.

Highlighting the importance of specialist nurses

We will continue to highlight the importance of Parkinson’s nurses and how crucial it is that we empower and look after this community so that people with Parkinson’s never have to imagine a world without them.

Organisations such as the PDNSA and the Deep Brain Stimulation Nurse Association (DBSNA) lead by example, providing important recognition for the role as well as being fully fledged support networks for nurses working in Parkinson’s.

The DBSNA is also celebrating their 10th anniversary this year and holding their 10th conference in Sheffield on 14 and 15 November 2024. Part of their celebrations will include bringing together all of the Association's previous Chairs, to thank them for getting the profession to where it is today.

Visit the DBSNA website to find out more about the organisation and their mission.

Join in on the celebrations

We’ve already started highlighting the importance of Parkinson’s nurses on our channels but we’re not done. We’ve got a lot of exciting developments happening in the next few months so keep an eye out on the Excellence Network X (Twitter) for ways to get involved in celebrating Parkinson’s nurses.

Follow the Excellence Network on X (Twitter).