Meet a Parkinson's nurse
Tracey Smith has been a Parkinson’s specialist nurse since 2006. So she knows better than most people why it’s so important for everyone to have access to a specialist nurse, and the difference they can make.
Tracey was working as a district nurse when she first learned about the role of Parkinson’s nurse. “I knew a little bit about neurology, but certainly not enough to class myself as an expert,” she remembers.
“But I went on a 2-day conference for Parkinson’s nurse specialists and I came back completely elated at the thought that I could become one.”
What inspired her most was the chance to work together with people over time, to solve multiple problems.
In a lot of nursing, it’s task-oriented. You do one thing, then you leave. But in this role, you’re supporting the whole family. You develop relationships and you’re with them for a long time.
And that journey can take place over many years. “We see them have babies, have grandchildren, go to weddings, all of that lovely stuff,” she says, “but we also see the challenges as their Parkinson’s progresses or changes.”
Working together
So how does that relationship start? “My first meeting with a new patient is about explaining what the role of the Parkinson’s nurse is, what they can expect from me and also what I expect from them.”
It takes collaboration between patient and nurse to make it a success, Tracey says: “My job is about education, signposting and making sure they’ve got access to all the things that they need to be their own best version of themselves.”
What that involves will be different for every patient, but it can include education, support, medicines, management, treatment options, and supporting their families and loved ones as well.
And on the other side, Tracey says: “I expect them to contact me if there’s a problem. They have appointments every 6 months in our organisation. But if they have issues in between, we want to hear about it. I don’t want them to come to us and say, ‘I’ve had a terrible 3 months!’.”
Preparing for your appointment
People with Parkinson’s, and their family or supporters, can make sure they get the best out of their appointment with a little preparation.
It works best when patients come to an appointment with a list of questions, and let me know what their key priorities are.
“What issues or concerns do they have, whether that’s physical, emotional or psychological? Have there been any changes to do with other health conditions?
"Have there been changes in their social structure? For example, are they now living alone? And most importantly, please bring your medications with you - what we think has been prescribed and what has been dispensed don’t always match.”
Understanding each person’s challenges means that Tracey can refer people to the best services for them - perhaps speech and language therapy, occupational therapy or mental health support.
“Often people come in with an idea of the help that they need, but other times they’ll just tell me 'I’m struggling with the stairs,' and we have a conversation about the best way to tackle that.
That support isn’t just for the person with Parkinson’s themselves. “A lot of people are living with Parkinson’s very independently, but if someone is taking on that carer role I make sure that they have access to the right support.”
20 years of progress
Tracey has seen three big changes in her role over the years: “When I started, there were very few drugs available. Now we have lots of different classes of medication. That allows us as healthcare professionals to be really positive and proactive. We’ve got so many tools in our toolkit.”
Secondly, she says, there’s a lot more understanding of Parkinson’s in society, and among healthcare professionals. “Going back a couple of decades it was all about trying to treat the motor (movement) symptoms. Now we understand that anxiety, bladder and bowel function, and sleep are all key symptoms of Parkinson’s too.”
Finally, she says, Parkinson’s itself has changed. “When I first started, the average age of onset was 75. I only ever saw people in their retirement years. Now a lot of my patient are of working age. We’re diagnosing much younger, with much milder symptoms. My youngest person living with Parkinson’s is 37, and was diagnosed at 31.”
No two the same
It’s easy to compare your symptoms or treatment to someone else’s, Tracey agrees. But Parkinson’s varies so much, and 2 people’s symptoms can be completely different. That means the treatment and support they need could be very different too.
“It’s a very individual condition, which is why it’s all the more important to be honest with your healthcare professionals and let them know if you’re struggling with anything.”
Great care, everywhere
Since 1996, we’ve invested more than £15 million into funding, training and supporting Parkinson’s nurses.
But 1 in 5 people with Parkinson’s in the UK do not have access to a Parkinson’s nurse. Over the next 3 years, Parkinson’s UK is planning to raise £9 million to:
• fund new nurses and specialists
• increase Parkinson’s training and education for healthcare professionals
• help us continue to advocate for great care, everywhere.