• 25Jan

    Revealing the experiences of neurology patients

    The Neurological Alliance has launched a new report, The Invisible Patients: revealing the state of neurology services.

    The report brings together the findings of the Neurological Alliance’s inaugural quality of commissioning audit and neurological patient experience survey, and it identifies significant variation in the quality of neurological services among clinical commissioning groups (CCGs).

    Findings presented in the report include:

    • Only 20.4% and 26.2% of CCGs respectively have assessed the number of people using neurological services and the prevalence of neurological conditions within their area.
    • Only 33% of CCGs obtain vital feedback from patients in regards to the neurological services they commission.
    • These issues have a significant impact on patients’ care, with 58.1% of patients having experienced problems in accessing the services or treatment they need.

    The neurological patient experience survey was hosted online between 30 June and 17 September 2014, receiving 6,916 responses in total and other findings included:

    • 71.5% of respondents were not offered a care plan to help them manage their condition.
    • 71% of respondents feel to some degree that they are involved in making choices about their care and treatment.
    • 59.1% of respondents note that they have not been offered an opportunity to take part in a clinical or research study but would be interested to do so if an opportunity arose.
    • 34.1% of CCGs have mechanisms in place to include patients in decision-making processes.

    The report makes a number of recommendations, including ensuring mechanisms are put in place to capture patient feedback and improve the sharing of information on clinical trial opportunities.

    The Neurological Alliance is the collective voice of more than 80 national and regional organisations working together to make life better for the millions of people in England with a neurological condition.

    The full report can be read here.