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.
We want to hear about your experiences of epilepsy health services during COVID-19. We've set out how you can do this below.
Your experiences of epilepsy health services during COVID-19
The COVID-19 pandemic has had a significant impact on the health service. We want to hear about your experiences of epilepsy health services during recent months. Whether it's good, bad or somewhere in between, -we want to know what it's been like for you when using or providing epilepsy health services during COVID-19.
We're really keen to hear from two groups of people.
- People with epilepsy, or parents and carers of people with the condition
- Epilepsy healthcare professionals
By sharing your experiences we will get a better understanding of how COVID-19 impacted the people who use and provide epilepsy health services. It will also help to shape our work on this issue going forward.
Find out how to share your experiences below.
People with epilepsy and parents or carers of people with the condition
For people affected by epilepsy we want to know about your experiences of accessing and using epilepsy health services during the COVID-19 pandemic.
Have your planned appointments been impacted? Have you had a telephone or video consultation instead of a face-to-face consultation? Have you been able to contact local epilepsy services if you've needed them? This could include your epilepsy specialist nurse or your neurologist. We want to know about what's worked well and if you've experienced any problems when trying to access epilepsy health services.
Epilepsy healthcare professionals
For epilepsy healthcare professionals we want to know about your experiences of providing care and support to people with epilepsy during the COVID-19 pandemic.
Were you moved to general medicine or COVID wards during the pandemic? Has your Trust been able to maintain epilepsy health services since March? What changes were made to how epilepsy services are delivered? Have you been able to access support during the pandemic? What worked well and what could have been done to better support healthcare professionals and people with epilepsy?
We can treat any information you provide with the strictest confidence. Whether it's been good, bad or somewhere in between, your experiences matter to us.
We can treat any information you provide with the strictest confidence. Whether it’s been good, bad or somewhere in between, your experiences matter to us.