Living with Parkinson's Disease

In the early part of 2023, Healthwatch Stoke-on-Trent engaged with community-led group Living Well with Parkinson’s whose stories collectively stressed the lack of support they were receiving through the NHS. As a response to the amount of feedback received, they decided to revisit our work on Parkinson’s care services in Stoke-on-Trent to see what, if anything, has changed. They reached 39 people via a survey.

Nearly two thirds were not given any or enough information at nor following diagnosis.

Patients have an expectation that they should have access to a specialist consultant in Parkinson’s on a 6 monthly or annual basis to monitor and review their condition and medication. However, very few have this service. Four respondents have resorted to arranging private appointments.

Best practice guidance suggests that all patients with a diagnosis of Parkinson’s should be reviewed every 6 - 12 months by either a specialist consultant or nurse.  Most had seen a nurse, but expected to see a consultant.

Very few people were aware of the existence of the Parkinson’s rehabilitation service, which included the physiotherapy service. Very few had had access to any form of rehabilitation. These included the members of the Base Body Fitness group who were very committed to maintaining their physical wellbeing through fitness training. 

Over four in five respondents reported seeking help and information from alternative sources about what support and help they could access to help manage their condition and prevent deterioration in their health. A small number had sought this through a private healthcare route but the majority through other local and national organisations, through word of mouth and through internet searches.

The report contains four recommendations about support, information, inclusion and accessibility.