Research reveals impact of the pandemic on the Parkinson's community

Researchers at Lancaster University worked with us to run two UK-wide surveys to gather insights from people living with Parkinson’s and their families who provided unpaid care during the pandemic. 

The first ran in April and May 2020 and the second in August 2021. This allowed researchers to measure the change in symptoms over the course of the restrictions and the pandemic. Read "The impact of COVID-19 restrictions on people affected by Parkinson's" report (PDF, 1.9MB).

Worsening symptoms

The findings show that both motor and non-motor symptoms were heavily impacted. 

Overall, 8 in 10 people with fatigue (86%), stiffness (83%) and slowness of movement (88%) reported a decline in these symptoms. 

Anxiety and depression also increased considerably with 7 in 10 people reporting that their anxiety had worsened in 2021, more than doubling the percentage from the previous year. And almost 4 times as many people with the condition said their depression got worse (rising from 13% to 48%).

Slowness of movement, fatigue and sleeping issues all doubled year-on-year, while muscle cramps increased threefold. We believe these significant declines could be in part because of government restrictions that limited people’s access to physical activity.

Also, we know our community had reduced access to physiotherapy, as services struggled to meet the needs placed on them.

Limited access to services

As well as a deterioration in symptoms, our community shared that they weren’t able to access their healthcare services in quite the same way.

• In the 3 months before our 2021 survey, over half (54.3%) of people with Parkinson’s had an appointment with their care provider cancelled, with consultants cancelling slightly more frequently than nurses (31% compared to 28%). 
• Other appointments that had been cancelled include physiotherapist (18%), speech/language therapist (18%), occupational therapist (14%) and psychologist (6%). 

Virtual appointments

• Almost 3 in 5 people with Parkinson’s (58%) had a phone or online appointment with their Parkinson’s nurse and over a third (35%) had had one with their consultant. While aspects of these were seen positively, only 4 in 10 (40%) said they were pleased with the outcome of their consultant appointment.
• Just under half (46%) of people with Parkinson’s surveyed felt their doctor could understand them well, and fewer than a quarter (23%) felt the connection with their doctor was comparable to that of a face-to-face appointment. 
• Only 1 in 10 (12%) would recommend online or phone appointments to another person with Parkinson’s.  

We also interviewed people with Parkinson’s to better understand their experience of virtual appointments, so we could use their insights to improve the appointments and also develop what we think as an organisation about them. 

A person with Parkinson’s said: "I would prefer to see someone face-to-face, but would be ok with phone appointments as they’re better than nothing. I am concerned about video consultations though as I don’t want them to be offered rather than face-to-face consultations."

Gary Berry, 59, from Shepperton said: "It's been 10 years since my Parkinson's diagnosis, and generally now I feel much more in control of managing my condition than the initial period after my diagnosis. However, the pandemic has really heightened my anxiety which has a knock-on effect on my physical symptoms. I had to be really cautious when it comes to socialising and this has increased my isolation and brought me down. My self-confidence and self-esteem have really been knocked.

"I have only had one face-to-face appointment with a healthcare professional since the start of the pandemic, my neurologist. The problem is that when everything is done over the phone it's really difficult to describe all my symptoms. I feel more at ease when I see someone in person, how can they assess my gait, for example, over the telephone? Parkinson's has both physical and mental symptoms that are easier to effectively assess properly when seen."

Our calls to improve services

Throughout the pandemic, we have been monitoring Parkinson’s services and escalating our concerns with the NHS and governments. We are arguing that Parkinson’s services are given resources so they can provide the care and support that people with the condition need.

The NHS is facing the biggest backlog of appointments in its history and is planning how it can change and flex its services to meet these increased demands. We don't want people with Parkinson's and carers to miss out. This is why we’re calling for governments across the UK to tackle the NHS backlog and enable people with Parkinson’s to:

• receive the right care and treatment at the right time supported by robust workforce planning
• access therapy services to keep them well including advanced therapies like Deep Brain Stimulation (DBS), which are time sensitive
• prioritise access to mental health services for people with Parkinson’s and their carers to enable them to recover from the strains of the pandemic.

Caroline Rassell, CEO of Parkinson’s UK, commented: "As restrictions ease and everyone looks forward to a new normal, we have taken stock of the real impact that the pandemic has had on the Parkinson’s community at large. 

"Over the last 2 years, we’ve worked with Lancaster University to gather insight into the reality of restrictions on exercise, isolation, virtual appointments, and so much more.  

"2 years of being, at ‘best’, clinically vulnerable has taken its toll on people living with the condition and those providing vital, unpaid care for them. 

"As the world reopens and as the NHS refocuses, we won’t allow the ever more urgent needs of people with Parkinson’s and their carers to be forgotten. With our newly acquired insights, we’ll be making sure that their needs are being heard by key decision makers so that the future looks a lot brighter."

Get involved in our work to improve health and care services

Play your part in our campaigning to ensure health and care services prioritise people with Parkinson’s and carers by:

• joining our Campaigns Network
• sharing your experience 
• becoming a campaign volunteer.