Lessons learnt from COVID: a chance to reset and re-evaluate a Parkinson's service
This survey of people with Parkinson’s disease (PD) aimed to:
- Explore their experiences of living with PD during COVID and lockdown
- Understand any frustrations with the service
- Inform service improvements
- More support is available than many people realise, meaning there is a need for better sign-posting and coordination
- People with PD would prefer a more multi-disciplinary team approach to services
- Third sector organisations like Age UK can help people access community and social services
- Patients must be able to easily access PD services and receive prompt responses
A total of 37 people responded to a survey that was distracted with the local PDUK branch’s newsletter. It found:
- 78% reported reduce frequency of appointments in the last year
- 33% had an appointment cancelled with no alternative offered
- In 74%, appointments were converted to telephone or video; of these 92% said the appointment was helpful, and 62% said the option of telephone appointments in the future could be beneficial
- 92% were able to seek PD advice when they needed it
The survey also found a high need for community services, and that living with PD during COVID had led to increased feelings of frustration, loneliness, uncertainty, and fear.
The project led to a number of recommendations for service improvement. They include:
- Quarterly meetings with the PDUK service improvement advisor and PDUK patient group
- Updating a business case for a PD specialist nurse with survey data
- Strengthen working relationships with the community geriatrics team, Rapid Response Therapy Team, and the Age UK coordinator
- Offer telephone/virtual appointments as an option for every clinic
- Directing multi-morbid, frail people with PD towards Elderly Care led local units, and younger, more robust, single pathology patients or those under consideration for apomorphine/Duodopa/DBS to neurology-led services
More Parkinson's Academy COVID-19 Projects
'The things you can't get from the books'
Parkinson's Academy, our original and longest running Academy, houses 20 years of inspirational projects, resources, and evidence for improving outcomes for people with Parkinson's. Led by co-founder and educational director Dr Peter Fletcher, the Academy has a truly collegiate feel and prides itself on delivering 'the things you can't get from books' - a practical learning model which inspires all Neurology Academy courses.