SUDEP Action

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New Neurological Alliance report: how has neurology patient experience changed since 2014?

A survey of thousands of neurology patients reveals that services to diagnose, treat and provide care are failing patients across the spectrum of neurological disorders. The Neurological Alliance is now calling for neurology to be prioritised within the NHS and for opportunities to improve the system to be seized.

Analysis of the survey data shows that patient experience in every area – time taken to receive a diagnosis, access to specialists, on-going care – has significantly deteriorated in the last two years. With the number of neurological cases in England estimated to be 12.5 million, this is a troubling finding, potentially impacting millions of people.

Sarah Vibert, Neurological Alliance Chief Executive, said: “The NHS crisis hitting the headlines this year has been happening in neurology for years. We want to use what we’re learning from the survey to improve the experience of neurology patients. I hope that by 2018 we can report a turnaround in patient experience.”

The Alliance’s recommendations in the survey report cover four key areas:

  • Addressing delays in diagnosis
  • Improving access to information, care planning and coordination
  • Local engagement and prioritisation
  • A long term commitment to improvement

The full report is available from the Neurological Alliance web site:

SUDEP Action works with the Neurological Alliance to help raise the profile of neurological conditions and help improve neurological services.  We work with bereaved families to help us achieve this, and ensure that lessons are learnt to influence better practice.  The Burns family are one of the many examples of this, and you can read about Charlie's story below.

Charlie Burns Story 

Charlie Burns, from Wiltshire, had his first witnessed seizure on 7 October, 2011. He was attended by a paramedic crew who thought it might be a febrile convulsion, and so did not take him to the hospital. Over the weekend Charlie was fine; but his parents were not happy with the diagnosis and took Charlie to see their local GP on Monday 10 October. Charlie explained that he often woke up during the night gagging and needing a drink, and quite often couldn’t feel the rest of his body.  The GP suggested that Charlie might be suffering from Nocturnal Epilepsy and referred him for an emergency appointment to see a Neurologist.  The earliest available appointment was the 18 of November, 2011. Charlie died on Tuesday 11 October, four days after his first seizure, before the neurologist appointment took place. A coroner’s report recorded his death as Sudden Unexpected Death in Epilepsy (SUDEP). Since Charlie’s death, his family has worked with SUDEP Action and the South West Ambulance Service NHS Foundation Trust to create SUDEP training videos for paramedics and other health professionals, to help them understand and identify epilepsy risk factors including those associated with SUDEP, so that patients at high risk are admitted or swiftly referred to a specialist. The training videos were launched in October 2016 and are being rolled out across the South West Ambulance Service NHS Foundation Trust.

Read more about their work and SUDEP training videos here