Parkinson’s UK have recently published the results of their nationwide study, which looked at the prevalence of Parkinson’s in the UK and how this is has changed.
Information from studies like this help us identify gaps in Parkinson’s research and care. We use these insights to help demonstrate the urgent need for disease-modifying treatments in our communications and the impact that these could make on people living with Parkinson’s.
What are some key findings?
This study involved the analysis of 18 million patient records, making it the largest study of its kind in Parkinson’s. From this data, the team have identified several important findings.
1. The number of people with Parkinson’s in the UK is estimated to have risen from 153,000 to 166,000.
Parkinson’s remains one of the fastest growing neurological conditions in the world, affecting an estimated 11.8 million people globally. This only strengthens the need for new treatments and better care.
2. The rate of diagnosis has fallen, and the likelihood of receiving a diagnosis is not the same for everyone.
From 2019 to 2021, the rate of diagnosis fell by 26%, and these numbers have still not returned to pre-pandemic levels. The team propose this may be due to access to neurology services in the UK. Wait-times are often lengthy for the NHS, and the number of Parkinson’s specialists is low, making it difficult for people to access this care.
The team also identified several groups where rates of Parkinson’s were higher; this includes older age groups and those who live in rural and/or affluent areas. Although the study cannot explain why these discrepancies exist, research suggests factors such as exposure to environmental contaminants and the presence of genetic risk factors may play a role. Differences in access to and quality of healthcare may also influence this.
3. On average, people with Parkinson’s have a lower life expectancy.
There are many factors that could contribute to this, such as the specific symptoms a person has, the age of diagnosis, and other health conditions. Furthermore, Parkinson’s affects each person differently, and the challenges it poses will vary from individual to individual. What is important, however, is that every person with Parkinson’s receives the care and resources they need to live well with the condition.
If you are interested in reading the full study, this has been published for public access on the Movement Disorders Society. Please note this contains more detailed figures and statistics, which some may find challenging or upsetting.
Why is this study important?
The study shows that as the number of people with Parkinson’s grows, so does the pressure on our healthcare system. Finding a treatment able to slow, stop, or reverse the condition would not only improve the quality of life of people with Parkinson’s, but also reduce the frequency and severity of medical complications. We cannot do this, however, without participation from both researchers and people with Parkinson’s.
Cure Parkinson’s and Parkinson’s UK have a number of opportunities to get involved in research, including the recent launch of the EJS ACT-PD platform – a revolutionary way of conducting clinical trials in the UK.
We welcome this latest prevalence data from Parkinson’s UK as we urgently need further research to help us understand the causes and triggers of Parkinson’s. We suspected that many more people were living with Parkinson’s and Parkinson’s-related conditions than those who currently have a diagnosis. Thanks to this research we now know this to be true.166,000 people in the UK have a diagnosis but up to 21,000 more are living with Parkinson’s unaware and unsupported. We urgently need more research to find a cure for Parkinson’s.
Helen Matthews, CEO, Cure Parkinson’s
