National launch for ‘revolutionary’ Parkinson’s project

Pictured front row (L-R): Emma Pearson, Parkinson’s Disease Nurse Specialist; Alyson Evans, Project Manager from UHPNT; Steve Ford, Chief Executive of Parkinson’s UK; Fiona Murphy, Parkinson’s Disease Nurse Specialist; Dr Camille Carroll, project lead; and Rebecca Partridge, Design Researchers in Lab4Living at Sheffield Hallam University.


A project that could revolutionise care for Parkinson’s patients and staff has been launched at a national event.

Entitled 'Developing Home-based Parkinson's Care', and led by the University of Plymouth and University Hospitals Plymouth NHS Trust (UHPNT), the project will focus on co-designing a new service to help Parkinson’s patients, carers and healthcare staff monitor a person’s condition remotely – ensuring care remains person-centred, while improving wellbeing of healthcare staff. 

The launch took place on Tuesday 23 July at Future Inn in Plymouth, following the recent announcement of £75,000 funding from The Health Foundation and £15,500 from a Parkinson’s UK Excellence Network Service Improvement Grant.

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 carers. 

Why is the work necessary?

Current guidelines from the National Institute from Health and Care Excellence suggest that people with Parkinson’s should receive specialist review at least every six months, usually provided by a consultant and community Parkinson’s disease nurse specialist (PDNS). But a recent audit of patient experience, conducted by the project team, found that 46% have consultant appointments delayed by more than six months, and 60% have not seen the community nurse within the last year. Some regions of the UK don’t have the specialist service, and 50% of vacant PDNS posts are due to long-term sick leave or resignation.

What will the new service look like?

The key aim is to bring together necessary stakeholders (people with Parkinson’s, carers, researchers and PDNS) to co-design the service. One of the main focuses will see patients use a wrist-worn device known as a Personal Kinetigraph (PKG®) to help them and a specialist team monitor their condition at home. 

Another vital element is that the service will work better for healthcare staff; removing some of the frustrations and isolation of working in the current system, and resulting in enhanced wellbeing.

The service will also deliver an education package, letting people know how to ensure the service works best for them, as well as providing people with the knowledge they need to manage their Parkinson’s symptoms better themselves and ‘live well’ with Parkinson’s.

Who will it be delivered to?

The service will initially be delivered to 150 patients in Plymouth city, West Devon and East Cornwall, as a pilot. If successful, the team hopes the system could be rolled out across the UK following the project’s completion in March 2020.

The launch event brought together people with Parkinson’s, their families, healthcare teams, technology experts and project partners to ensure that care delivery really meets the needs and expectations of people living with the condition.

What the experts say

Project lead Dr Camille Carroll, Associate Professor in the University of Plymouth’s Institute of Translational and Stratified Medicine (ITSMed) and Consultant Neurologist at UHPNT, said: 

“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. 

"To have this project off the ground with the involvement of partners and service users is fantastic, and having an advisor such as Professor Bas Bloem from Radboud University – internationally-renowned for developing innovative Parkinson’s care pathways – will really help us to drive forward.

“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.”

Parkinson’s patient John Whipps, from Looe in Cornwall, is taking part in the pilot and said: 

“I hadn’t seen a Parkinson’s specialist for over a year, and my symptoms were fluctuating. Something in the system needs to change and it’s great that steps like are being taken to raise awareness of the service problem. Hopefully the new service design will make life easier for others like myself living with the condition.” 

Steve Ford, Chief Executive of Parkinson’s UK, said: 

“One of the challenges with Parkinson’s is that it’s such a complex condition, and the current six-month clinic visit doesn’t necessarily match how often people might want to speak to their doctor. This is a fantastic project looking at how we might redesign services that make the best use of the clinicians’ time, and providing support when patients most need it. We’re really pleased to be supporting the work, and the launch event has been great.”

Helen Matthews, Deputy Chief Executive of The Cure Parkinson’s Trust, said: 

“This visionary project really puts the needs of individuals living with Parkinson’s and their care partners at the heart of service delivery, with objective data informing how treatment should be optimised and personalised, which will have a significant impact on quality of life. For the first time Parkinson’s specialists will have an insight into the impact of Parkinson’s at home – this has important implications for being able to evaluate new treatments in clinical trials in the future.”

Sarah Henderson, Assistant Director of Improvement Programmes at the Health Foundation, said: 

“We’re excited to support this project, one of 23 that have been developed by frontline teams to improve health and social care across the UK. We are looking forward to working with the teams to develop their innovative ideas, put them into practice, and gather evidence about how their projects are improving care for patients.”

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