Current guidelines propose that individuals with Parkinson’s should receive a specialist review like at regular intervals, whatever the stage of their condition, more often than not given by an expert and community Parkinson’s infection nurse specialist (PDNS).
A recent audit of patient experience found that 46% have specialist appointments postponed by over a half year, and 60% have not seen the network nurture inside the most recent year. Some regions of the UK don’t have the specialist service, and half of the empty PDNS posts are expected on long haul wiped out leave or resignation.
Now, patients with Parkinson’s could see their care transformed thanks to a new service involving wearable technology. In a new project called Developing Home-based Parkinson’s Care, scientists at the University of Plymouth and University Hospitals Plymouth NHS Trust (UHPNT) will see patients using a wrist-worn device known as a Personal Kinetigraph (PKG®) developed by the Global Kinetics Corporation.
The device will monitor movement symptoms of Parkinson’s and process them through a proprietary algorithm. Enhanced by a questionnaire that asks patients to detail non-motor symptoms, for example, changes in mood, patients will wear the PKG for six-day stints, empowering them and their care team to recognize and implement any expected changes to treatment.
The specialist Parkinson’s team can then work remotely, ensuring that help – including calls or clinic appointments – can be offered when it is needed.
A key part of the project is the design of a new service, which will bring together people with Parkinson’s, their families, and healthcare teams in co-design workshops. This will ensure that care delivery really meets the needs and expectations of people living with Parkinson’s.
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.
Another key element and a priority for The Health Foundation is that the service will also work better for healthcare staff, removing some of the frustrations and isolation of working in the current system and resulting in enhanced wellbeing.
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-centered service will also be much higher.”
“The existing service puts a lot of pressure on nurses, and attending clinics is arduous for both patient and carer as it presents logistical and physical challenges that add to burden and distress.”
“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.”
“The new project is designed to reduce the burden of attending hospital clinics; improve motor and non-motor Parkinson’s symptoms; ensure appropriate and timely contacts to health-care services; and result in improved quality of life for people with Parkinson’s and their carers. If successful, the intervention will prove a means of providing a resilient and sustainable service faced with the future demands of a condition that is increasing in prevalence and complexity.”
Parkinson’s patient John Whipps, from Looe, is taking part in the pilot and said: “Using the PKG is simple and gives the specialist an easy and quick way of monitoring my Parkinson’s disease remotely. Hopefully, the new service design will make life easier for others like myself living with the condition.”
His wife and carer, Sue Whipps, said: “One of the hardest things with Parkinson’s is trying to decide when your Partner needs their extra doses of medication. The PKG results help take the guesswork out of that, which is really valuable for ensuring the best care possible.”
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.”
Julie Dodd, Director of Digital Transformation at Parkinson’s UK, said: “The PKG is an exciting example of how technology has the potential to transform care in conditions like Parkinson’s. People tell us that one of the most frustrating things about the condition is how unpredictable it is; no two days are the same, which makes it incredibly hard to plan.”