Neurology: New report highlights plight of 'Invisible Patients'

More than half of patients who depend on neurological services have experienced problems accessing them, according to a new study conducted by The Neurological Alliance.

Their report ‘The Invisible Patients: Revealing the state of neurology services’ finds an alarming level of variation in the performance of clinical commissioning groups (CCGs).

Results include; that only 14.7 per cent of CCGs have effectively assessed local costs; that only 33 per cent obtain vital feedback from patients; and that 20.4 per cent and 26.2 per cent respectively have assessed the number of people using neurological services and the prevalence of neurological conditions in their area.

Chief executive, Arlene Wilkie, comments on the importance of the report, saying, “For too long, people living with neurological conditions have been the ‘invisible patients’, often marginalised by a system that doesn’t understand their conditions or their needs. This has to change. I am delighted that this report provides a vital first step in exposing the true state of neurological services today. It is time for the health and care system to open its eyes to the needs of the millions of people who live with these complex and challenging conditions. They must be invisible no longer.”

Key responses the Alliance want CCGs to take include a greater appreciation of the importance of patient feedback, the identification of local clinical and research trial opportunities and more rigorous assessments to better inform local neurology data.

Director of external affairs at the Epilepsy Society, Sarah Vibert, is among those to welcome the report’s suggestions. She comments: “This report, coupled with an audit of commissioning services, reveals significant problems which must be addressed by commissioners to improve services.

“The system must not fall apart; patients are being failed. Epilepsy Society has started to address these key issues with the appointment of the first national nurse consultant for epilepsy commissioning. Her aim is to improve local services, patient pathways and outcomes for people with epilepsy.”

The report was based on the experiences of 7,000 respondents, who together represented around 80 different neurological conditions.