How many people have Parkinson’s in North Cumbria: What can we learn?
If you live with Parkinson’s in North Cumbria, you may have wondered how many other people in the area are living with the condition, and whether living in a rural area affects your experience of Parkinson’s or the support you can access. Dr Rosanna Varden’s PhD research set out to build a clearer picture of Parkinson’s across North Cumbria. In this blog, Rosie shares some of the findings, including how common Parkinson’s is locally, the symptoms people experience, access to services, and some interesting differences between people living in rural communities and elsewhere.
Dr Rosanna Varden, Geriatrics Registrar in the Northern Deanery
Background
The number of people living with Parkinson’s is rising globally, although the reasons for this are not well understood. We still do not fully understand what causes Parkinson’s. Understanding how many people have Parkinson’s and where they live may provide clues as to what causes it.
North Cumbria is a diverse, predominantly rural county with coastal areas. In areas such as these, there are concerns that we do not know how many people live with long term conditions such as Parkinson’s. Better understanding of this provides vital information to help plan and deliver services.
What did we do?
We reviewed electronic health records for all those with a possible or confirmed diagnosis of Parkinson’s, or symptoms suggestive of Parkinson’s. We used specific criteria to confirm the diagnosis, offering face to face review for all those whom the diagnosis was uncertain. We asked people about their symptoms of Parkinson’s, as well as how well they were able to access their local services.
Important findings
We were able to compare our findings with those that would have been found using large healthcare dataset searching alone, highlighting differences. These differences may inform how we are able to use such datasets effectively, helping us to improve national and global Parkinson’s statistics in the future.
This study suggests that the number of people with Parkinson's is higher in North Cumbria than elsewhere in the UK. We do not yet know why, but now we have a better understanding of possible trends that could guide focused and targeted future research
We know that more men than women have Parkinson’s, but this difference was bigger in North Cumbria. The average age of those with Parkinson’s was similar to that seen nationally, 74.7 years.
This study has described how well people are able access to transport and technology in this region. This has allowed us to identify those at most risk of not being able to access services. A grant from the Parkinson’s Excellence Network has funded administrative staff time to help address this.
Fatigue and sleep disturbance are much more commonly reported non motor symptoms in North Cumbria compared to elsewhere, this is an unexpected and interesting finding. Future research could explore this further.
In the most rural areas of North Cumbria, despite reporting a greater symptom burden, people reported a better quality of life than we would expect. We recognise the benefits of living in this beautiful area and perhaps harnessing this could be used to improve care overall.
What does this mean for people affected by Parkinson’s?
This research gives us a much clearer picture of what it is like to live with Parkinson’s in North Cumbria, but it has also raised some interesting questions. Why might Parkinson’s be more common here than in other parts of the UK? Why are fatigue and sleep problems reported so frequently? And what can we learn from people living in the most rural parts of Cumbria who, despite experiencing more symptoms, reported a better quality of life than we might expect?
Importantly, the findings are already beginning to make a difference. The research identified people who may find it harder to access services because of issues such as transport or access to technology, and funding from the Parkinson’s Excellence Network is helping the local team begin to address some of these barriers.
There is still much more to learn, but having a better understanding of who is living with Parkinson’s in North Cumbria, where they live and what their experiences are is an important step. It can help researchers and healthcare teams focus on the issues that matter locally and work towards services and research that better meet the needs of people with Parkinson’s and their families across Cumbria.
