Home Based Parkinson’s Care

A £90,500 funded project by The Health Foundation (£75,000) and a Parkinson’s UK Excellence Network Service Improvement Grant (£15,500), it includes 150 patients in Plymouth, West Devon, and East Cornwall as a pilot before being rolled out across the UK.

Led by Dr Camille Carroll and Dr Terry Gorst from the University together with University Hospitals Plymouth NHS Trust, the project is implementing a new Parkinson’s service that utilises user-friendly technology and traditional resources to support home-based care.

Project partners include Cure Parkinson’s Trust, Flourish Workplace, Sheffield Hallam University, Global Kinetics Corporation, Parkinson’s UK, Fre-est, Radboud University, the South West Academic Health Science Network (SWAHSN) and UCB Pharma – along with people with Parkinson’s and their care partners.

Launched in July 2019, the project is due for completion in 2020.

Working towards home based care

  • r Design and deliver care pathway information and support materials
  • . Undertake patient and staff evaluation
  • A Enrol 150 patients from Plymouth, West Devon and East Cornwall
  • ~ Utilise feedback and evaluation to improve care pathway

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whereby patients visit their specialist clinician for a time-locked review, regardless of need, is unsustainable and outdated for a Parkinson’s Service.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.

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 Dr Camille Carroll, Associate Professor and Honorary Consultant Neurologist:  camille.carroll@plymouth.ac.uk

The doctor won’t see you now: the role of technology to support participatory health care – Dr Terry Gorst

Read Dr Terry Gorst's take on the role of technology to support participatory health care as seen in Times Higher Education. Dr Gorst discusses the Home Based Parkinson's Care project in the context of the COVID-19 pandemic, offering technology and empowerment of patients, care partners and families as one of the solutions to decrease the pressure on stretched health services and provide effective care pathways for individuals with Parkinson's. 

Read the full article

Part of The Old Normal: Our Future Health series

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.

Find out more about Applied Parkinson's research.

Find out more about Applied Parkinson's research.