Lancaster University: Lancaster research reveals devastating impact of pandemic on Parkinson’s community

Research by Lancaster University has painted a grim picture of how the coronavirus pandemic has affected those living with and affected by Parkinson’s.

The researchers worked with the charity Parkinson’s UK to run two UK-wide surveys to gather insights from people living with the condition and their loved ones providing informal care during the pandemic.

The first survey was in April-May 2020 and the second in August 2021. This allowed researchers to measure changes in those who reported specific symptoms over the course of the restrictions and pandemic.

The findings show that both people with Parkinson’s movement and other aspects of their day to day life (e.g., psychological well-being) were heavily impacted by the pandemic. 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 four times as many people with depression say that it got worse (rising from 13% to 48%).

The symptoms which were reported to have experienced the biggest decline were slowed movement, fatigue and sleeping issues which all more than doubled year-on-year, while muscle cramps were over three times higher. These significant declines, the researchers argue, can be in part directly attributed to the restrictions limiting people’s access to physical activity.

Professor Jane Simpson from Lancaster University said “We know from our existing research that living well with Parkinson’s is a challenge but one that is achieved by many people, using the skills that they develop through their experience of managing the condition. But those skills are not enough without support and what we have seen with the pandemic, the resulting restrictions and the significant changes in health care provision is that all that support has been decimated. Also, many of the difficulties that have been created are not simply reversed with the end to restrictions. Health care services have not returned to pre-pandemic levels and routines have been often irreparably changed with significant effects on physical and mental health.

“Our research has also shown that for those family members who provide so much support for people with Parkinson’s, this has been a very difficult time. The loss of healthcare and other support has also affected them, as has the lack of social contact with others. Providing care for a loved one can span a number of tasks and take a physical and emotional toll, and we have a responsibility to provide better support to those who are themselves providing so much.”

Laura Cockram, Head of Policy and Campaigns at Parkinson’s UK said: “The pandemic hit people hard, but our findings show that its impact has been catastrophic for many people with Parkinson’s. Deemed clinically vulnerable or even clinically extremely vulnerable, our community took additional measures to protect themselves from the virus, but it has had serious long-term damage to their health.

“Stay at home directives, combined with gym and local group closures, saw the majority of our community significantly reduce their level of physical activity which they tell us helps to manage their motor and non-motor symptoms. The result is a decline in health far above what we would expect to see naturally in a period of two years, which is deeply concerning.”

Parkinson’s is the fastest growing neurological condition in the world and there is currently no cure. Current treatments can only alleviate some symptoms but there is nothing available to stop the condition advancing and no cure. While some people may be familiar with symptoms such as a tremor, there are in fact over 40 difficulties associated with the condition, which affects everyone differently.

Helen Tumilty, 72, from Durham, has lived with Parkinson’s for 24 years but has seen a dramatic decline in the last two. She said: “Over the course of the pandemic, my Parkinson’s has definitely worsened at a faster rate than ever before. Before all the lockdowns I would go to pilates, yoga and choir, now I can no longer do those things and I rely on my carers. I have found it difficult to access appointments with my specialists because I have speech problems and I stammer which makes it hard to communicate over the phone. I tried to speak to a handy man on the phone recently but he could not understand me so my carer had to arrange the appointment with him. I am concerned that I will never get back on top of managing my health and it is frustrating to have to rely on other people so much. I feel like I am becoming invisible.”

In addition to a deterioration in symptoms, the situation is intensified by insights into access and quality of healthcare services during the pandemic. Just under half (46%) of people with Parkinson’s surveyed felt the 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.

Reflecting on the need for the NHS to ensure that people with Parkinson’s are not left unsupported any longer, Ms Cockram, said: “Just like the NHS, people with Parkinson’s are starting life after the pandemic in a much worse state than when it started. The NHS faces an enormous backlog of appointments including for life changing surgeries like deep brain stimulation which can address these declining motor symptoms for some people, but has a small window of opportunity to be successful.

“Without robust workforce planning and ensuring that suitable appointments are offered, we could see many people miss out on vital care and provisions which enable them to live well and maintain a good quality of life with Parkinson’s. It is absolutely vital that the UK Governments all act now and prioritises these areas of provision and care for the growing Parkinson’s community.”