Project Manager: Dr Sarah Page
Assistant Project Manager: Dr Stephanie Wells
Steering Committee: Dr Chris Thomas, Dr Biju Mohamed, Dr Ruth Lewis-Morton, Tracy Williams, Sandra Mahon, Dr Jyothi Adenwalla, Amanda Wall
Cardiff and Vale Unviersity Health Board
In Parkinson’s, damage to specific brain cells results in varied and complex symptoms, requiring input from a broad team of healthcare professionals. Regular Parkinson’s-specific physical exercise can slow the progression of symptoms. The COVID-19 pandemic ended pre-exisiting group sessions providing education about Parkinson’s, introducing team members and demonstrating appropriate exercises. Many face-to-face appointments were also cancelled. The specialist nurses experienced a large increase in queries, and fewer people received the multidisciplinary care recommended by NICE.
We decided to develop a web application providing information about Parkinson’s and local services, and advice and exercises from different professionals.
My Parkinson's aims to:
Provide accessible, relevant and accurate information about Parkinson’s for people with Parkinson’s and their families and carers.
Promote the importance of physical activity and provide access to exercises and advice from members of the multidisciplinary team, specifically designed for people with Parkinson’s.
Promote self-management strategies and empower people with Parkinson’s to take steps to improve their quality of life, make it easier to undertake their activities of daily living, and slow the development of some symptoms.
Introduce and clarify the roles of members of the Parkinson’s team in Cardiff and Vale University Health Board
Reduce repetition by staff, freeing up time to focus on the service users most in need of their individualised expert advice.
Signpost to useful information about relevant local and national services that can support people with Parkinson’s, including third sector organisations.
The scope of the project and accessibility requirements for people with tremor resulted in higher costs than the budget allowed. This resulted in a change of developer and scaling back some ideas.
All clinicians involved in My Parkinson’s were either redeployed to COVID wards or had exponentially increased workloads over winter due to the pandemic. Work was squeezed into spare time between shifts.
The process of ascertaining essential content in partnership with service-users and providers, making videos, writing content, editing content and producing the application has taken longer than anticipated. A first version will soon be available for service-user feedback.
Service-users and service-providers in the Parkinson’s team voted for their favourite name from a list of options. People were able to submit their own suggestions too. “My Parkinson’s” was the winner.
Analysis was undertaken of all of the phone calls made to and by the Parkinson’s specialist nurses during the first wave of the pandemic in 2020. They were categorised by theme and this was used as the basis for what content was included. Service-providers and users also expressed their ideas about what content it was important to use.
An “Expert by Experience” who is a local service-user was part of the content board of editors, giving her advice on wording, focus of articles and content. Her perspective was invaluable.
Specialist therapists from different disciplines wrote their own content and were filmed demonstrating different exercises and techniques for people with Parkinson’s.
An “Expert by Experience panel” is being formed by local service-users and their families who will contribute written content to My Parkinson’s from their perspective, information about local events, and be available to be involved in further quality improvement projects within the Parkinson’s service.
“Our patients often struggle to remember a lot of the information given to them in clinic, so it would be absolutely brilliant to have something like the app for them to refer to at their convenience and share with their family members. I am certain this will drive up the quality of care and support we can offer our patients”
“My Parkinson’s will act as a toolkit to support daily life with Parkinson’s and to establish self-management routines. It will also make patient advice equitable. Everybody will receive the same information.”
Parkinson’s Specialist Nurse
“It will be so useful to have an easily accessible resource that our patients can use to remind them of their exercises!”
My Parkinson’s is currently with our web developers, but soon a version will be ready for service-users to test and feedback. When finalised, all local service-users will be invited to access My Parkinson’s.
One Expert by Experience has volunteered to run demonstrations for people who are less confident with technology.
My Parkinson’s has been designed so that other Parkinson’s services can easily update a few details and use it within their own service.
Links to information in Welsh are provided where available, but as phase 2 of the project, My Parkinson’s will be translated into Welsh and be fully bilingual.
Our Exemplar Experience
Useful contacts, Good advice.