Empowering people with Parkinson’s

Photo of Parkinson's resource pack

People with Parkinson’s in the South West are being supported to better manage their condition, with an innovative new ‘Home Based Care Pathway’ launched last October.

The service reform, brought about by a team of researchers led by University Hospitals Plymouth (UHP) and University of Plymouth, could reduce waiting lists and improve quality of care for patients.

Despite guidelines that consultant reviews should be every six months, a patient experience survey had found that 46% of patients had appointments delayed by more than six months, and some had not seen a community nurse within a year.

By changing the setup of review appointments, patients are now seen when they need it most. In addition, they are provided with a suite of resources and wearable technology to closely monitor their condition at home.

The goal, according to Dr Camille Carroll, Consultant Neurologist at UHP and Associate Professor at the University of Plymouth, is to empower patients to be in control of managing their condition.

Camille Carroll She said: “We learned that patients wanted to be better informed about their Parkinson’s, have all the information about their care available in one place, and be able to better self-manage their condition.

“This new approach has led to a much more reactive, flexible service. It means that patients are seen when they need to be, and can access support and information easily.”

The project resulted from a series of workshops with patients, their partners and multi-disciplinary practitioners which explored what was wanted from the service.

A resource folder is given to patients when they start the pathway. It contains attractively designed materials, and includes information on how to recognise and manage different Parkinson’s symptoms, as well as what to do if help is needed. The team is using patient feedback to improve upon the materials.

The resources also highlight other important aspects of wellbeing such as exercise, and provides support information for carer partners.

As well as the self-management information, patients are monitored regularly at home. Patients wear a wrist-worn device which monitors movement symptoms and is supplemented with questionnaires which asks patients about other Parkinson’s symptoms, such as their mood. This information is then fed to the Parkinson’s team who can work remotely to support patients to manage their troublesome symptoms and provide additional help, or review, if needed.

Dr Carroll added: “The UK prevalence of Parkinson’s disease will increase by a fifth by 2025, so the challenges associated with the existing service put a lot of pressure on clinical care staff, and attending clinics is arduous for both patient and carer as it presents logistical and physical challenges that add to the 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.”

Dr Terry Gorst Senior Research Fellow at University of Plymouth said: “This is a truly innovative service pathway, and ultimately the first of its kind within the NHS in Parkinson’s. We have worked hard with patients to develop support materials that they are able to use to help them live well with their Parkinson’s. Our evaluations have provided some really valuable feedback. We are confident that by the end of the project, we will have a great service that transforms the way that Parkinson’s care is delivered.”

Welcoming the improvements in the new pathway, patients and carers said:

"Before the Home Based Care Pathway we could never be sure when our next nurse or consultant appointment would happen or if our problems needed urgent attention. The Home Based Care Pathway provides us with information, suggestions for self-help and a reliable way of contacting the medical team should it be necessary. A big improvement, and especially when face to face appointments have been reduced due to Covid-19 measures." Carer, Sue Whipps.

Martha Holley explained: “The previous appointment system was not flexible enough to fit in with having to work and being a young person with Parkinson’s. The new pathway offers an opportunity to become more involved with managing our condition, both by training us to understand our own Parkinson's and by having the control to ask for help when needed instead of waiting for appointments that are randomly scheduled.”

Finally, another patient praised the team involved: “The team are motivated, friendly and caring, keen to deliver the best possible, personalised care for their home-based patients. The care does not feel remote or impersonal; in fact it is the exact opposite. It is reassuring to be able to email the team and know that you will get a friendly response to whatever is worrying you, and that, if necessary, your concern can be escalated quickly.”

The Home Based Care pathway has been rolled out across Plymouth, West Devon and East Cornwall with 87 people with Parkinson’s on the new pathway.

The project has been supported by the following organisations: Health Foundation, Parkinson’s UK, Sheffield Hallam University, The Cure Parkinson’s Trust, Livewell Southwest, South West Academic Health Science Network, UCB, Global Kinetics.  

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