PKG

People with Parkinsonñޙs could see their care transformed thanks to a new service involving wearable technology.

The project, entitled Developing Home-based Parkinson's Care and led by the ñ and University Hospitals ñ NHS Trust (UHPNT), will see patients use a wrist-worn device known as a Personal Kinetigraph (PKG™) as part of a new scheme to help them and a specialist team monitor their condition at home.

Developed by the Global Kinetics Corporation, the PKG monitors movement symptoms of Parkinsonñޙs 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 will wear the PKG for six-day stints, enabling them and their care team to identify and implement any required changes to therapy.  

The specialist Parkinsonñޙs team can then work remotely, ensuring that help ñޓ including calls or clinic appointments ñޓ can be offered when it is needed.

Current guidelines suggest that people with Parkinsonñޙs should receive specialist review at least every six months, whatever the stage of their condition, usually provided by a consultant and community Parkinsonñޙs 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 donñޙt have the specialist service, and 50% of vacant PDNS posts are due to long-term sick leave or resignation.

A key part of the project is the design of a new service, which will bring together people with Parkinsonñޙs, 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 Parkinsonñޙs.  

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 Parkinsonñޙs symptoms better themselves and ñޘlive wellñޙ with Parkinsonñޙs.  

The project has received £75,000 funding from The Health Foundation and £15,500 from a Parkinsonñޙs UK Excellence Network Service Improvement Grant, and will initially be delivered to 150 patients in ñ city, West Devon and East Cornwall, as a pilot. If successful, the team hopes the system could be rolled out across the UK.  

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 ññޙs Institute of Translational and Stratified Medicine (ITSMed) and Consultant Neurologist at UHPNT, said:

ñޜThe UK prevalence of Parkinsonñޙs 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.

ñޜThe 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.

ñޜWe want to help people with Parkinsonñޙs 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.

ñޜThe new project is designed to reduce the burden of attending hospital clinics; improve motor and non-motor Parkinsonñޙs symptoms; ensure appropriate and timely contacts to health-care services; and result in improved quality of life for people with Parkinsonñޙs 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.ñޝ

Dr Camille Carroll, discusses her project: Developing Home-based Parkinson's Care

The project is being delivered in partnership with the Cure Parkinsonñޙs Trust, Flourish Workplace, Sheffield Hallam University, Global Kinetics Corporation, Parkinsonñޙs UK, Fre-est, Radboud University, the South West Academic Health Science Network (SWAHSN) and UCB Pharma. 

Parkinsonñޙs patient John Whipps, from Looe, is taking part in the pilot and said:

ñޜUsing the PKG is simple and gives the specialist an easy and quick way of monitoring my Parkinsonñޙs disease remotely. Hopefully the new service design will make life easier for others like myself living with the condition.ñޝ

His wife and carer Sue Whipps said:

ñޜOne of the hardest things with Parkinsonñޙs 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.ñޝ

Sue and John Whipps

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

ñޜWeñޙre 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.ñޝ
Julie Dodd, Director of Digital Transformation at Parkinsonñޙs UK, said:
ñޜThe PKG is an exciting example of how technology has the potential to transform care in conditions like Parkinsonñޙs. 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."