Meet a Parkinson's UK helpline adviser

Steven and the Helpline team take hundreds of calls a month from people at all stages of their Parkinson’s journey.

There’s no typical caller. Some are newly diagnosed and want to understand more about Parkinson’s before they start telling the people around them. 

"Then there are people who have had the condition for years but have only just heard about us," says Steven. They also take calls from the family and friends of people with Parkinson’s, and healthcare professionals looking for advice.

Every call is different. "Sometimes it can be difficult to catch the person’s name, they’re talking so fast," Steven says. "But I listen to it all and write down as much as I can to work out how the issues are related, and the most useful ways we can help."

One referral the team can make is to a Parkinson’s UK local adviser (PLA). "They’re our eyes and ears in the community. They often know the local voluntary organisations in their area," Steven explains. "And a PLA can help people to get their needs assessed, or to access an occupational or speech and language therapist."

But the Helpline team can also help callers get expert advice on symptoms and side effects, their rights at work, what benefits they might be entitled to, and how to pay for care. They can also refer to other teams within Parkinson’s UK for ongoing support.

Of course, all these issues are linked, and it can be hard to know where to start. "My notes for a single call can be a couple of pages of A4," says Steven.

A few calls especially stick in his mind. One evening, Steven spoke to a caller whose family member had Parkinson’s. They had recently become very distressed, and started hallucinating and behaving unpredictably. "One of the nurses had mentioned in our daily briefing that urinary tract infections could have this effect on people. So I asked the caller whether that could be the case for their relative."

When Steven started work a few days later, there was an email from the same caller. Their family member now had antibiotics for their infection from the GP, and had started to feel better. They thanked him for being so calm and focused when the family was feeling panicked and lost.

And the support from different teams can have a huge impact.

"When I was a benefits and employment adviser, I helped a couple to apply for Attendance Allowance, which then triggered a claim for Pension Credit and Council Tax relief. In all, they ended up getting over £15,000 more each year."

Since starting work for Parkinson’s UK, Steven has seen changes in the type of support people need. "NHS resources are more stretched," he admits. "People with Parkinson’s might only see their consultant once a year, or even less often, so they don’t get a chance to tweak their medications."

The Parkinson’s UK nurse advisers on our helpline can’t do that, or see patients’ NHS records. But they can help people find ways to cope with their symptoms better, and advise them on what to tell their consultant or GP.

Talking to people who are struggling is challenging but rewarding. "We look out for each other in the team, and are ready to support with any complex calls," Steven says. "It can really help to take just a few extra minutes to write up your notes before the headset goes back on ready to help the next person."