Lessons learnt from COVID: a chance to reset and re-evaluate a Parkinson's service

Aim

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

Headlines

• 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

Key findings

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.

Recommendations

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