Advice for epilepsy caregivers during the COVID-19 pandemic

20th May 2020

With the COVID-19 pandemic still ongoing, many carers have had difficulty understanding the best way to help their patients with epilepsy. New recommendations have been drawn up by a team of international epilepsy specialists, led by Professor Ley Sander. 

The report, which was published in the journal, Neurology, has outlined a series of guidance aimed at helping healthcare professionals to provide the best possible care whilst avoiding face to face visits. 

The document starts by emphasising that people with epilepsy are at no more risk of contracting COVID-19 than anybody else, unless they have other factors, such as older age (70+) or respiratory diseases. However, they do also advise that those with epilepsy remain isolated as much as possible and away from contacts and symptomatic individuals. 

Emergency medication 

Ensuring a regular supply of medication is key to keeping those with well controlled epilepsy safe. It’s also absolutely essential to ensure that despite the change in environment or routine that medications continue to be taken regularly. 

Emergency care plans are recommended for all alongside a prescription of rescue medication for emergencies. Clear instructions on how and when these should be used need to be cascaded to carers and family members. 

Appointments should also be continued, but using video and phone technology as at the time of writing hospital visits are minimised. 

Guidance on caring for people with epilepsy

The rest of the document provided guidance on a number of issues carers are facing in caring for epilepsy patients during the COVID-19 pandemic. We’ve summarised them here: 

  • Consider a comprehensive care plan that contains information on contingency plans should family and caregivers not be able to provide care due to their own illness. 
  • Discuss the best ways to further minimise the risk of seizures. Adequate sleep, medication consistency and regular meals are all potential considerations. 
  • Re-emphasise the importance of maintaining a good medication routine, especially during the pandemic. This is particularly important if the regular caregiver usually helps with medication routines and is unable to do so. For example, alarms or phone calls as reminders could help to ensure consistency. 
  • Carers and family members need to ensure a regular supply of medication to prevent shortages from happening. 
  • The use of online pharmacies wherever possible would be recommended in order to limit the amount of contact outside of the home. 
  • Exercise, healthy eating and adequate sleep should be reiterated. These things can all be neglected in the change in routine and all can have adverse effects on those with epilepsy. 
  • Emotional support should be considered, especially for those who are in total isolation or those experiencing anxiety or depression. Additional considerations may need to be taken and ensuring they have access to the appropriate helplines. 

You can read the full report here in the journal of Neurology. 

National Epilepsy Training can help

During the COVID-19 pandemic, we are continuing with the majority of our care and training services via video conference technology. Please contact us to find out how we can help by calling 01706 303075 or email