Poll finds a quarter of people with Parkinson’s are wrongly diagnosed

People with Parkinson’s are being given incorrect treatment as they struggle to get an accurate diagnosis.

Our poll of more than 2,000 people, found 26% were first told they had something else. As a result, almost half of this group (48%) were given treatment for their non-existent condition, with 36% receiving medication and 6% undergoing operations or procedures.

Of those receiving unnecessary treatment, more than a third (34%) reported that their health got worse as a result.

The poll also found that women were more likely to be misdiagnosed than men, and errors were most common in people aged 51 to 60.

Parkinson's is a progressive neurological condition. But Parkinson’s progresses differently, with symptoms varying from person to person. Diagnosing Parkinson’s can take some time, and there is currently no definitive test for diagnosis. This means that misdiagnosis is common.

"It took 4 years of appointments"

Katy Dickinson was diagnosed with Parkinson’s in May 2018 at the age of 27, but she had symptoms years before and struggled to get her diagnosis.  

Katy said: "It took 4 years of appointments and being told that I was ‘doing it to myself’ before I got my diagnosis." It took Katy an emergency trip to A&E for repeated falls to eventually get a diagnosis. She was admitted to hospital and finally saw a neurologist who diagnosed her with Parkinson’s.

"It was a relief to finally be believed after years of being made to feel it was all in my head."

Affects everyone differently

Katie Goates, Professional Engagement Programme Manager at Parkinson’s UK, said: "Parkinson’s is an incredibly complex condition with more than 40 symptoms, and it affects everyone differently.

"One of the biggest challenges for Parkinson’s research is that there is no definitive test for Parkinson’s. Our survey has shown that because of this, people are being left in limbo and seeing their health deteriorate, which is unacceptable.

"We are investing in vital research to find a much-needed diagnostic test, but we also recognise the key role that health professionals have in helping people with Parkinson’s get the right diagnosis and treatment as soon as possible."

Parkinson’s UK is committed to working with health and social care staff to increase awareness of the early symptoms of Parkinson’s and improve the diagnosis experience. Through the UK Parkinson’s Excellence Network, we provide a range of learning opportunities that are suitable for staff at all levels and across different disciplines.