Thousands are living with Parkinson's undiagnosed and unsupported, our new research finds

What did we find? 

Parkinson’s is on the rise in the UK. But thousands more are undiagnosed. Today, around 166,000 people in the UK have a diagnosis of Parkinson’s. But we estimate that up to 21,000 more are living with the condition, unaware and unsupported.

The number of people newly diagnosed with Parkinson’s grew each year up to 2020. But during the coronavirus pandemic, the number dropped by 26% (from 26,000 to 19,300). And it hasn’t returned to where we expect it to be. 

Read more key findings on our Parkinson’s statistics page.

Caroline Rassell, our Chief Executive Officer, said: 

"Parkinson’s is a complex condition with unique challenges, needing specialist support from charities and the healthcare system. We play a vital role in strengthening specialist roles within the NHS and are proud to have invested over £15 million in funding, training, and supporting Parkinson’s nurses since 1996. We continue to campaign, fund key roles and educate health professionals so they have the expertise they need to care for people with Parkinson’s. 

"But we cannot do this alone, and so we desperately need the NHS to address this diagnosis crisis, the growing backlog, and improve access to quality, specialist care."

How did we carry out our study?

Our study looked at 18 million patient records alongside hospital admissions data across the UK. We found people with Parkinson’s in 3 ways:

• those with a diagnosis on their primary care (GP) record
• hospital admission records
• those currently taking anti-Parkinson medications and are likely to go on to be diagnosed with Parkinson’s. 

Previous studies only used GP records and we were only able to access 5 million records. So we’ve made greater insights into the Parkinson’s community.

Our study has been peer reviewed and published in Movement Disorders Clinical Practice. By being independently reviewed and published in a journal, it becomes part of our shared global understanding of Parkinson’s. With our knowledge about Parkinson’s, we can help researchers and clinicians understand the reality of Parkinson’s in the UK today.

How will we use our findings? 

The study gives us new insights into people living with Parkinson’s today and into the future. We’ll use those insights to shape our services and our priorities as a charity.