Working towards home based care
Monitoring Parkinson’s symptoms
Each year there are millions of face-to-face hospital outpatient appointments that do not need to take place in a hospital, nor do they need to occur face to face. This model of care whereby patients visit their specialist clinician for a time-locked review, regardless of need, is unsustainable and outdated for a Parkinson’s Service.
Current guidelines suggest people with Parkinson’s should receive specialist reviews at least every six months with a consultant or community Parkinson’s disease nurse specialist (PDNS), whatever the stage of their condition.
However, an audit conducted by the research team found that 46% of people experience consultant appointment delays of more than six months. 60% have not seen a community nurse within the last year.
In fact, some regions in the UK don’t have a specialist Parkinson’s service and 50% of vacant PDNS posts are due to long-term sick leave or resignation.
In the South West, we are working to empower and support people with Parkinson’s to play a more active role in their healthcare, from home. Moving away from traditional paternalistic healthcare, this approach moves to participatory healthcare.
Highly commended in Digital Innovation Team of the Year 2021
"We are delighted to be shortlisted for a prestigious BMJ Award, which allows us to share our positive experience of a unique care pathway for Parkinson’s with patient needs at its centre. More technologies will become available in the future, offering huge potential for quality of life gains for people living with Parkinson’s. We have taken the first few steps towards this future. We want to inspire other services to share our journey, whilst at the same time celebrating the energy, support and efforts of our team and Parkinson’s community who are leading the way." Dr Camille Carroll
Embedding smart and wearable technology into care pathways
Developed by the Global Kinetics Corporation, the PKG® monitors movement symptoms of Parkinson’s and processes them through a proprietary algorithm. Supplemented by a questionnaire that asks patients to detail non-motor symptoms such as changes in mood, patients wear the PKG® over a six-day period during every day activities that enables them and their care team to identify and implement any required changes to therapy.
It provides the clinical team with detailed data regarding symptoms such as speed of movement, tremor and activity levels to support clinical decision making.
The project will also embed an app and web portal – NMS Assist – within the service that will allow the person with Parkinson’s and their care partner to record, monitor and report non-motor symptoms to the team.
The specialist Parkinson’s team then work remotely, ensuring that help – including calls or clinic appointments – can be offered when it is needed.
“The UK prevalence of Parkinson’s disease will increase by a fifth by 2025, so the challenges associated with providing a timely and patient-centred service will also be much higher. We want to help people with Parkinson’s to live the best lives they can for as long as they can, and this project aims to empower patients to take control of their own condition.”
Dr Camille Carroll, Associate Professor and Honorary Consultant Neurologist
‘Live-well’ with Parkinson’s
The goal is to empower people with Parkinson’s.
The research teamwork extensively with people with Parkinson’s, their families and healthcare teams in the development of new care pathways to ensures that care delivery meets the needs and expectations of people living with Parkinson’s.
The service is also delivering an education package, providing information on how to ensure the service works best for patients, as well as providing people with the knowledge they need to manage their Parkinson’s symptoms better themselves and ‘live well’ with Parkinson’s.
This works towards reducing the burden of attending hospital clinics and ensure appropriate and timely contacts to health services that aims to improve the quality of life for people with Parkinson’s and their care partners.
In turn, it allows a resilient and sustainable health service for a disease that is increasing in prevalence and complexity, enabling a service that works better for healthcare staff.
To collaborate with the Applied Parkinson's Research Group, please contact us via AppliedParkinsons@plymouth.ac.uk
Applied Parkinson's Research Group
The Applied Parkinson’s Research Group, led by Dr Camille Carroll, focuses on clinical trials of neuroprotective interventions in Parkinson’s, digital innovation for care and research, and genetic aspects of Parkinson’s.