What's going on?
As part of our response to the COVID-19 pandemic Epilepsy Action has brought together a coalition of clinicians, professional groups and patient organisations. The coalition aims to ensure that people with epilepsy do not face additional risks during this challenging time.
The recently published NHS RightCare epilepsy toolkit sets out that: "People with epilepsy are at increased risk of dying suddenly and prematurely. Nearly half of these unexpected deaths are potentially avoidable, with improved access to information, services and better risk management."
It is very welcome that we seem to be moving past the initial phase of the COVID-19 pandemic. However, epilepsy health services remain limited in some places and emergency admissions for people with suspected epilepsy continue to be lower than normal. This means that some people with epilepsy still face increased risks.
In response, we have put together a consensus statement that sets out three clear asks of the health service. These asks are strictly time limited and are being regularly reviewed in line with government and NHS plans for restarting health services. The three asks in the statement are:
- People with suspected first seizures must have access to a consultation with a clinician with expertise in epilepsy and to appropriate diagnostic tests
- People with epilepsy (PWE), their parents and carers should be able to contact neurology services if they have problems, and a plan to respond should be in place.
- Epilepsy clinical staff who were moved to different roles during COVID-19 should be prioritised for returning to epilepsy services
In the weeks and months ahead, we will be working hard to ensure that local Trusts and national health leaders give epilepsy services the attention and support needed to resume normal services as quickly and safely as possible.
What are we doing?
Ultimately the best way to ensure that people with epilepsy receive the care and support they need in a safe and timely manner is by having access to the full range of epilepsy health services. We are engaging with national and regional health leaders and urging them to prioritise epilepsy as part of the next phase of restarting NHS services.
Epilepsy Action are also reminding health leaders of the good work that was undertaken before the COVID-19 pandemic around what good epilepsy health services should look like. Moving forward, we are making the case for national and regional health leaders to use this opportunity to improve epilepsy health services for the future.
Your experiences of epilepsy health services during COVID-19
As part of our response to COVID-19, Epilepsy Action asked people with epilepsy and epilepsy healthcare professionals to share their experiences of accessing or providing epilepsy health services during the pandemic. We have now published a report on the results and will use this to work for improvements to epilepsy health services.