Parkinson’s in the UK: what do we know?

We identified people diagnosed with Parkinson’s in 3 ways: those with a diagnosis on their primary care (GP) record, hospital admission records, and those currently taking anti-Parkinson medications and likely to go on to be diagnosed with Parkinson’s. Altogether, this means we were able to access records of 1 in 4 people in the UK today.

You can find the key statistics from the study on this page.

In this blog, we discuss the main things we’ve learnt from the study and how we’re going to be using them to drive forward better research, treatment and care for people with Parkinson’s.

Parkinson's is on the rise.

We estimate there are now 166,000 people diagnosed with Parkinson’s in the UK. This is an increase from our previous estimate of 153,000 and is driven by the growing and ageing population in the UK.

By 2030, we expect the number of people with the condition in the UK to reach 174,000.

But the pandemic had a huge impact on diagnosis

While numbers of people with Parkinson’s have grown, they have not grown as much as we would have anticipated.

Before the COVID-19 pandemic, more than 26,000 people were being diagnosed with Parkinson’s each year.

When the pandemic struck in 2020, this number fell to around 19,000. And in the years since, the number of people being diagnosed has not returned to where we would expect it to be. Further insight suggests that the major reason for this huge drop in diagnosis is lack of access to NHS services, with deaths due to the pandemic playing a more minor role.

We believe there could be up to 21,000 more people living with Parkinson’s who are undiagnosed and not receiving vital treatment or support. 

Director of External Relations at Parkinson’s UK, Juliet Tizzard, comments:

"As the numbers of people with Parkinson’s continue to grow, so will pressure on crucial NHS services. Thousands of people with Parkinson's don't have access to health specialists they desperately need to live well with the condition. 

"We’re working directly with the NHS to improve services for everyone with Parkinson’s across the UK. And we’re campaigning for and funding more specialist Parkinson’s nurses, therapists and other healthcare professionals through our Nurse Appeal to improve care and support right now."

Find out more about our Nurse Appeal.

Read our information page "Do I have Parkinson’s?"

You’re less likely to be diagnosed with Parkinson’s if you:

• are a woman
• live in an urban and/or deprived area
• are of Black, Chinese, White Irish, Mixed or Other ethnicity
• live in Scotland.

Some of these findings are not new, such as men being more likely to be diagnosed than women. Others are more surprising, such as the lower number of people with Parkinson’s in Scotland and the differences by ethnicity.

This study cannot explain the underlying reasons for many of these differences. We believe there may be a mixture of things at play, including:

• Biological and genetic differences
• Environmental and lifestyle factors
• Health inequalities: unfair and avoidable differences between groups of people.

Claire Bale, Associate Director of Research at Parkinson’s UK, comments:

"We urgently need further research to help us understand the causes of Parkinson’s, the different experiences different groups have with the condition and of healthcare services.

"We will only find the answers if everyone with Parkinson’s has the opportunity to take part in research. We know that certain groups - in particular, those from ethnic minority backgrounds - are seriously underrepresented in research which hampers our ability to fully understand the condition and its impact.

"We’re working with people from these communities through our Race Equality in Research programme to change this and make research inclusive and representative for everyone."

Find out more about how to get involved in research.

Parkinson’s has an impact on life expectancy

Parkinson’s is an extremely variable and individual condition which makes it very difficult to say how it may progress in any person and exactly what that impact will be.

Our study shows that on average people with Parkinson’s have a shorter life expectancy than people without the condition.

We discussed these findings with people with Parkinson’s and they advised us that some might not want to know too much about the future, especially in the early stages. But that for others, understanding how the condition may impact them later is something they do want information about.

Neil, who has had Parkinson’s for over 7 years, comments:

"For me, it’s important to know that Parkinson’s is a condition that can shorten life because it helps me make decisions about my future. Understanding how Parkinson’s might impact me in future, means I can take positive steps.

"For instance, physiotherapy and exercise to maintain and improve my balance and help me avoid falling. And keeping an eye on things like swallowing changes with support from my speech and language therapist to address any issues early. Finally, knowledge of how the condition may progress has also been helpful for considering things like financial and care planning.” 

Find out more about how Parkinson's progresses.

Listen to 2 Parkies in Pod episode ‘Will I die from Parkinson’s?'

More people are being diagnosed with other forms of Parkinsonism

Alongside looking at Parkinson’s we also looked at records of people diagnosed with other related conditions which are often referred to as ‘Parkinsonism’. These include:

• DLB (Dementia with Lewy Bodies)
• Vascular Parkinsonism
• PSP (Progressive Supranuclear Palsy)
• MSA (Multiple System Atrophy)
• CBS (Corticobasal Syndrome)

Our study shows that the number of people with these rarer conditions has increased over the past 20 years and we now estimate there to be a further 28,000 people in the UK living with another form of Parkinsonism.

Professor Donald Grosset, one of the leaders of the study and a consultant neurologist comments:

"We believe these increases are due to improvements in diagnosis rather than that these conditions are becoming more common. And if this is the case this is a very positive finding as it means that more people are getting the right diagnosis and are therefore more likely to be receiving appropriate treatment and support."

We’re here to support people with other forms of Parkinsonism as well as Parkinson’s. We can signpost people to further information and support in their local area and also to specialist charities that focus on these rare conditions.

Find out more about other forms of Parkinsonism.

Call our helpline on 0808 800 0303 for support.

How are we using these findings?

Caroline Rassell, Chief Executive of Parkinson’s UK, shares how we’re going to be using the findings of this study:

"This new study has given us the most detailed and accurate picture of Parkinson’s in the UK that we’ve ever had. We’re using the findings to inform all our work - from support to policy and research.

"We’re sharing our learnings with others - including other charities, policymakers, NHS Trusts and researchers - so that we can address the new challenges and questions together.

"Finally, we’ll be using the data to inform our plans and strategy moving forwards so that we can make the biggest possible difference for every person with Parkinson’s in the UK."