ERUK is joining our Neurological Alliance partners to support the new #NeuroRestart campaign and call upon NHS England to set out its plans to ensure an immediate restart of neurological services, as soon as it is safe to do so.
A new report called “Restarting services for people with neurological conditions after the COVID-19 pandemic and planning for the longer term” details the experiences of more than 1,600 people with neurological conditions who took part in a recent survey. ERUK Chief Executive, Maxine Smeaton, has worked with the Neurological Alliance to help form the results from the report, attending their policy meeting to share insights and expertise from the perspective of epilepsy research.
The report found:
- 72% of respondents reported having had their NHS appointments delayed – 4 in 10 people didn’t know when until.
- Almost 4 in 10 people (39%) due to see a neurologist were not given a future date for their delayed appointment, leaving them in complete limbo.
- 19% of respondents felt lonely, 1 in 10 felt hopeless
Maxine Smeaton said:
“With epilepsy being one of the most common serious neurological conditions, these finding highlight the heavy toll that COVID-19 is having on people with epilepsy. We know that clinicians and NHS workers have done everything they can over the last few months. But it’s crucial that vital diagnostic and treatment services are resumed as soon as they can.
“Equally research has been impacted, and some people have had to stop access to promising new treatments given through clinical trials. At ERUK we’re doing what we can to minimise the delays and disruption, since research will provide the medicines of the future.”
In light of the findings, the Neurological Alliance and more than 40 patient organisations have today written to Sir Simon Stevens, Chief Executive of NHS England and NHS Improvement urging him to set out the plans to support services to restart.
What does this mean for epilepsy treatment, care and support?
People with epilepsy are experiencing increased waiting times for appointments, surgery and video telemetry which carries a significant risk for those with uncontrolled seizures.
ERUK recently launched an Innovations in Healthcare urgent research call to help understand better how epilepsy healthcare is changing because of COVID-19. The call aims to generate high- quality evidence that informs future delivery, quality, cost or access of care for people with epilepsy.