Epilepsy and how it affects communication

By Sarah Smith

Today (26) is Purple Day, set up by The Epilepsy Society to raise awareness and vital funds for research and support. Most people think they know what epilepsy is and that it causes seizures, but these seizures can also lead to temporary loss of function in one or more parts of the brain. These parts are often involved in understanding, organisation, and communication processing.

We often work with vulnerable people in the court system who have epilepsy, and they need support in a number of ways. There are more than 40 different types of epilepsy syndromes and many have associated language difficulties.

Communication difficulties may include:

  • Comprehension – Difficulty understanding what someone is saying. A person may struggle to understand environmental cues or routines.
  • Expression – It may be difficult to communicate with other people using body language or facial expressions. This could be because a person has slurred speech, or difficulties with social interaction.
  • Listening – Some people may find it hard to pay attention and listen to a person or an activity.

Communication difficulties can also arise suddenly, due to changes in a person’s medication. They can be connected to stress or other trigger factors. They may be due to epileptogenic activity in the brain that doesn’t necessarily appear as a seizure.

How can an intermediary help?

An intermediary needs to understand how epilepsy affects the person they are working with. Do they have seizures? What type of seizures do they have? Do they know of any triggers? What is their concentration like? What medication do they take and when? Are there any side effects?

Some people have insight into their difficulties, for others it’s a learning curve, and a very quick one that we need to adapt to. Exploring this with them so we can make recommendations on how best to adapt the court room, is crucial.

It can be beneficial to arrange a preliminary visit to the court room to reduce any anxiety surrounding the court environment. It also gives us an opportunity to work out the best seating arrangements for the vulnerable person. Going through the roles of court professionals and a simplified witness template to reduce any anxiety around the proceedings is also something we can do in advance.

We need to consider the lighting and any other triggers in the room, and if there are any hard surfaces around that might cause an injury if the vulnerable person is susceptible to atonic seizures.  

What can be put in place?

The Ground Rules Hearing is typically when we would cover the formalities. Can we ask for emergency break if the vulnerable person is showing signs of the onset of a seizure? If so, do we have a room they can be escorted to where they are safe and there are no triggers. For example, does the room have automatic lights or is there a switch we can turn off?

Often, having the reassurance of regular breaks and court professionals being made aware of their epilepsy can reduce the anxiety around having a seizure. This will also help the person to focus on the discussions in court. It can also afford that person time to take their medication or for someone who may have difficulty processing information quickly, time to absorb what has happened in each court session.

Our role is to ensure that vulnerable person is able to participate in proceedings, and for them to do so effectively, we need to monitor their presentation closely to notice any cues for a seizure. It could be a slight change in body language, a scrunching of the hands or a blank stare. Although we try our best, we may not always be aware when a seizure has happened, so being there to fill in the blanks during conferences outside of court is important. We can develop a court diary so the person, who may have poor retention, is able to reflect on the day’s events and come to court the following morning with questions.

If a seizure happens, this can affect a person’s communication abilities in a number of ways. The main point being their concentration. Some court users are not able to return to court that day, some, need 20 minutes to process what has happened. Our role is to update the court on the person’s presentation and make recommendations such as shorter court days, or later starts, to ensure they are able to concentrate and engage in proceedings.

Our reports and updates to the court are personalised to the needs of the vulnerable person we are working with. The strategies we develop are constantly being reviewed to ensure that person is given the fairest opportunity to participate in their proceedings, have the best opportunity to understand what is happening and achieve their best possible evidence. 

Find out more about the Epilepsy Society’s Purple Day