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14 January 2014

The Invisible Patients: Revealing the state of neurology services

Epilepsy Society is backing a report published today (14 January) by the Neurological Alliance which reveals that people with brain conditions such as epilepsy are marginalised by a system which doesn’t understand their condition or their needs.

The report identifies significant variations throughout England  in the quality of commissioning of neurological services. More than half of people with epilepsy say they have experienced problems or delays when trying to access health services, according to the report which represents the views of people living with around 80 different  neurological conditions. Nearly 7,000 people responded to the survey on which the report is based – the third largest number of respondents were people with epilepsy.

Significant problems revealed

Sarah Vibert, Epilepsy Society’s director of external affairs said: '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.'

Chief Executive of the Neurological Alliance, Arlene Wilkie, said: 'For too long, people living with neurological conditions, such as epilepsy, have been the ‘invisible patients’, often marginalised by a system that doesn’t understand their conditions or their needs. This has to change.'

Report recommendations

The Neurological Alliance’s report ‘The Invisible Patients: revealing the state of neurology services' recommends:

  • Every CCG should collate up to date and accurate local neurology data, underpinned by routine and rigorous assessments of the prevalence of neurological conditions and of the number of people using neurological services locally
  • All CCGs should ensure that mechanisms are put in place to encourage and capture patient feedback and input in regards to the quality and development of local neurology services
  • CCGs should work in partnership to identify clinical and research trial opportunities locally and support the appropriate sharing of information on such opportunities with patients

Read 'The Invisible Patients' report in full (opens in new window)