2018 03 26 Epilepsy Action Purple Day


Have you heard…

You will be surprised to hear of the many misconceptions about epilepsy, and of people who live with epilepsy. The ones listed below are but a few, though I am sure these and others are familiar to many of us.


Myth 1: You can catch epilepsy.

No you can’t catch epilepsy. It is not contagious like a common cold.


Myth 2: If someone has a seizure due to epilepsy, they will convulse (shake their arms and legs).

No this is not always true. There are many different types of seizures, and some are so subtle that you may not even notice they are happening.


Myth 3: A person can swallow their tongue during a seizure.

No they won’t. It is important to remember that if someone is having a seizure, you should never put anything in their mouth. The object can block their airway and make it hard for them to breathe.


Myth 4: If someone has epilepsy, they are not able to live a normal life and can’t take part in activities that others do.

Yes they can! Epilepsy is a medical condition that when appropriately managed, people can often lead normal lives.


As a Community Children's Epilepsy Nurse Specialist, offering support to patients and their families, which often includes busting these myths, is something that myself and my colleagues do on a daily basis. In order to support children and young people who have or may have epilepsy, there is a fundamental need to raise awareness and understanding about epilepsy among our friends, families, and communities.

Working in the community

The word community covers a large and diverse range of people that include members of the public and professionals. In my line of work, I often talk with teachers, nursery workers, youth centre staff, extended family, friends, and friends of friends. Basically, anyone who is connected to someone living with epilepsy.

My main aim is to share helpful information and top tips, and to answer any questions so that people feel empowered and confident to support a child or young person with epilepsy. Information that I share can include what epilepsy is, the different types of epilepsy, that epilepsy can be caused by different triggers, and that it can influence the mental wellbeing of the person with epilepsy and their family. This can help to provide some understanding about what epilepsy is, how it can impact an individual, and how people can support a person’s seizure management.

Ultimately, sharing information like this can help to keep a child or young person safe, and can also support them to achieve their life goals without restrictions. Having epilepsy should not prevent anyone from taking part in activities, it just means that some forward planning may need to happen first.

Also, when providing training in schools, family homes, and local community spaces, it becomes clear that there is a support network for my patients while they live their life in their community. This can have the added benefit of supporting others who live with epilepsy, and enables my team and myself to further build on our rapport with an ever expanding support network.


Working with families

It is important to me that in every meeting I have with a family, I always try to listen to the child or young person’s physical needs, and I also try to explore the thoughts and feelings of the whole family. I have developed the ability to better understand how living with epilepsy might have affected the emotional, behavioural, and developmental needs of the child or young person I am working with, as well as the life of the family as a whole.

Conversations open up with young people, sometimes for the first time, about worries, anxiety, low mood, difficulties in school, concerns about friendships, and a lot of other things. Parents also feel able to voice their concerns, not just about managing seizures, but also about adjusting to a different set of expectations about the future, living life with a chronic condition. These conversations might be easier in a community setting, at a patient’s home or school, away from the hospital where, perhaps rightly so, the main focus is the management and control of seizures. These conversations are also easier within a team like CYPHP, where I work closely with mental health professionals who can directly address concerns, as they arise with families.

Over the years while I have worked at the Children & Young People’s Health Partnership (CYPHP), I have learnt helpful tips that have enabled me to expand my knowledge and understanding of epilepsy to gain the information I need to support the child, young person, and family as a whole.


Epilepsy top tips

1. Allow time for questions: When working with a family, you never know what questions may be asked about epilepsy. Allowing time to talk through these is helpful for the child and family in moving forward. I also find this time useful to explore other aspects of their life that they may not have considered in their initial consultation. It is important for families to understand that no question is a silly question.

2. Busting myths: There are a lot of myths out there about epilepsy that can make families and children worry unnecessarily. In all my appointments, I make sure that the family can ask the questions that they may have, and for me to understand what they are struggling with.

3. Family dynamics: All families are different and have different family dynamics. Trying to get a sense of this can aid decision making and proposed changes.

4. Try not to achieve everything all at once: Setting achievable, bite size goals helps build confidence, self-esteem, and a sense of ownership in managing epilepsy. Try not to overwhelm a family with too much information, as remembering a lot of new information and jargon can be quite difficult. And yes, families can forget that you already mentioned something, so repeating something can be very helpful. I also find it helpful to recommend different sources that have reliable information, so that they can look at information in their own time.

5. CYPHP Health Support Packs: Following on from the above point, my team have developed Health Support Packs full of high quality information. They are nice to have as a go-to guide, with information from a trusted source. I also find them useful in guiding productive conversations with the child, young person, and their families.

6. Setting expectations: By taking the time to explain my role and what I can support a family with, helps families to focus their questions. Also, I often make sure to say that  I may not always be able to ‘fix’ the problem, that I don’t always have all the answers then and there, that some concerns take time to resolve, and some worries we can make better, but not always ‘fix’.


A helpful example

One young person I worked with was so worried about having a seizure in public, it was stopping her from leaving her home. Her anxiety was also having an impact on her family, as they felt that one person had to be in the home with her at all times.

I realised that the young person and family desperately needed some information about epilepsy, including lifestyle advice and seizure management. In effect, I tried to ease the young person’s concerns.

Despite my initial discussions, it was clear that the young person was not improving and so I made a referral to my mental health colleagues in CYPHP. Together we worked with the family, identifying individual worries and focussing on talking through these one at a time. The session ended with the young person setting their own goal – they wanted to attend a school trip at the end of the school term independently. A plan was made to work with the school, family, mental health team and other health services to make this happen.

To some, this person’s goal may seem insignificant. However, it was their first step in building their independence, managing their condition, and not letting epilepsy stop them from missing out on everyday activities or life goals. 


Take home message

The aim of writing my blog is to show that as an Epilepsy Nurse Specialist, at times I or my colleagues may not always be able to fix all the concerns or problems related to epilepsy. However, by working together with the young person, family and other professionals, we can make a meaningful difference by coordinating care appropriately for the person and their family.

In essence, by working together it can have a significant positive difference for the young person in the long run. By meeting and addressing any issues or concerns as early as possible can always help to build a rapport with the people you support, increase their level of engagement, and ultimately be beneficial in the overall management of their condition.


Helpful information about Epilepsy, support groups, and more can be found at:

To get your Health Support Pack, take the Health Check at www.cyphp.org/health-check



To see more of the latest news from CYPHP, please click here.

This is not an emergency service, please contact 999 if someone is seriously ill and their life is at risk