UK Surveys Capture How Pandemic Affected Patients, Caregivers

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by Mary Chapman |

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Based on survey results indicating that pandemic restrictions considerably aggravated Parkinson’s disease (PD) symptoms and hampered care, Parkinson’s UK is calling on its various governments to take remedial steps to improve both care and access.

Calls for action derive from a 41-page report by the nonprofit organization and Lancaster University, titled “The Impact of COVID-19 Restrictions on People Affected by Parkinson’s.”

The report is based on two UK-wide surveys that Parkinson’s UK and Lancaster conducted to gain insights from patients and their families and caregivers. The first survey was taken in April and May 2020, and the second in August and September 2021.

Each survey was launched to help Lancaster researchers evaluate changes in patients’ symptoms over the course of government restrictions on movement and in-person contact due to the pandemic, which limited access to care and physical activity.

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The first online survey involved 1,741 patients during the first COVID-19 lockdown, when restrictions were most severe. It aimed to understand the pandemic’s effect on the Parkinson’s community. The follow-up survey, with 722 respondents, sought to identify patients’ circumstances as society reopened, and it included both patients and caregivers.

The report provides key findings from the second survey and, where possible, spots differences between the two surveys. It covers changes over these two periods in symptoms, anxiety and depression, loneliness, social networks, care appointments, use of online and phone appointments, hospitalizations, mental wellbeing, respite access, and caregiver responsibilities.

Findings show that pandemic-related restrictions affected both motor and non-motor Parkinson’s symptoms, with a worsening reported in symptoms that include fatigue (86%), stiffness (83%), and slowness of movement (88%).

Seven in 10 respondents also reported greater anxiety last year, more than doubling the first survey’s results. In 2020, 13% of participants reported experiencing depression; last year, 48% said their depression had worsened.

“The pandemic has really heightened my anxiety which has a knock-on effect on my physical symptoms,” said Gary Berry, 59, who lives in Shepperton, England. “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.”

Those reporting sleeping issues increased from 27% in the first survey to nearly 71% in the second. Likewise, reports of muscle cramps increased from 17.2% to nearly 60%.

“We believe these significant declines could be in part because of government restrictions that limited people’s access to physical activity,” Parkinson’s UK stated in its press release. “Also, we know our community had reduced access to physiotherapy, as services struggled to meet the needs placed on them.”

Limited access to healthcare services due to appointment cancellations was also noted. While some aspects of virtual or phone appointments with health professionals were viewed positively, just 40% of respondents expressed being pleased with how their appointment turned out.

During those appointments, 46% of respondents felt that their physicians could understand them well, while 23% felt that their connection with their doctor was comparable to that of an in-person appointment.

In all, just 12% of respondents favored recommending online or phone appointments to other patients.

“The problem is that when everything is done over the phone it’s really difficult to describe all my symptoms,” Berry said in his survey response. “I feel more at ease when I see someone in person, how can they assess my gait, for example, over the telephone?”

Parkinson’s UK is calling for governments across the United Kingdom to help tackle the enormous appointment backlog faced by the National Health Service (NHS) so people with Parkinson’s can get appropriate and timely care and treatment. It also wants governments to help patients in accessing therapies that help maintain wellness and to time-sensitive treatments such as deep brain stimulation.

The organization is also asking governments to prioritize access to mental health services for patients and caregivers, helping them to recover from pandemic-related strains.

“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,” said Caroline Rassell, CEO of Parkinson’s UK.

“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,” Rassell added. “As the world reopens and the NHS refocuses, we won’t allow the ever more urgent needs of people with Parkinson’s and their carers to be forgotten.”