Empowering Young Epilepsy Patients: Understanding Their Needs in Transition

Transition is an extremely important topic within healthcare, with many assuming that it only refers to the transition from paediatric to adult health services - but is that really the case?

A while ago, I had the privilege to attend my first Epilepsy12 and OPEN UK national conference as my role as an Epilepsy12 Youth Advocate, voicing my - and my peers'- thoughts into what transition actually means to children and young people (CYP) with epilepsy. Is it just that transition from paeds to adult services? Or is it that transition from life before to the life after diagnosis? That transition throughout life, through stages of education and employment? Through building independent skills to better navigate through my condition and seek the appropriate services and support?

We recognised the importance of a holistic approach to epilepsy care, aiming to highlight the struggles that CYP with epilepsy face beyond what is typically addressed in standard healthcare consultations. With many of us experiencing medication side effects, stigma and essential lifestyle changes, epilepsy is indeed a condition that needs to be viewed from a different lens.

I aim to reflect on the learning points that I had learnt from my fellow E12 advocates, as we shared our experiences and struggles as epilepsy patients. I hope that this discussion can provide you with what transition actually means to us, what it truly means to live with epilepsy, and the struggles beyond the seizures we experience.

Before I continue, I'd like to thank Tony Tran and Anita for providing us with the safe space within Epilepsy12 to share our thoughts and ideas. My thanks also go to Niky Raja for the unconditional support throughout the conference, and to Sashank Uday , Demi and Grace whose dedication and hard work made this event a great success!

Diagnostic Transition

Epilepsy is an incredibly broad yet personal condition, with many associated risks and sacrifices that need to be made to manage our symptoms. Whether it's being told to avoid particular foods and food stimulants, avoid activities such as swimming, rock climbing, mountain climbing, or even having a strict sleep schedule to avoid tiredness and fatigue.

Upon diagnosis, children and young people (CYP) are told about what they can and can't do, along with the emphasis of medicine compliance in addition to the associated side effects of the medication, such as effects on fertility, attention span, mental health and growth. For many, this can be extremely restrictive, as diagnosis comes with responsibility - whether that is being able to develop the necessary independent skills to taking your own medication on time, being aware of the medical exemption certificates and HC2/3 certificates at the age of 18, along with managing prescription costs.

For many children and young people, the journey after diagnosis marks a significant transition - a shift from the freedom of their old lives to a new reality filled with responsibilities and precautions. Adjusting to these changes means not only managing their own symptoms but also changing aspects of everyday life, from school and social activities to future ambitions. This shift requires learning to balance the freedom they once had with the new priorities and limitations epilepsy imposes, which requires both resilience and adaptability.

Whilst such skills may seem trivial to others, this is incredibly important for those with epilepsy, to provide them with the chance to take their condition into their own hands and feel empowered. As children and young people begin to navigate life with epilepsy, the impact of this condition extends beyond medical adjustments, shaping their experiences in education, social settings, and daily routines.

Transition within Education

When CYP are diagnosed with epilepsy, they experience multiple side effects, which impact their mental health, attention span, memory - all of which can have a great toll on their educational progression. In addition to that, many CYP face stigma from their peers, as they are often undermined for their capabilities, and treated differently, all of which make it difficult for epileptic children to integrate within their surroundings. This often discourages young people with epilepsy from sharing their struggles out of fear of being judged.

Even the misinformation and lack of education around epilepsy in schools can be detrimental to those living with the condition. Recently, I heard someone describe epilepsy as 'a condition where your body just moves a lot and goes crazy' - but is this really what epilepsy is about? For some epileptics, they may be unmoved by this statement, whether its because they've already heard it a couple hundred times, or have developed the self- confidence to know that they are more than the misconceptions about their condition. However, for others, statements like these can reinforce feelings of isolation and misunderstanding, highlighting the need for greater awareness and accurate education about epilepsy.

Due to the physical impairments that epilepsy usually lacks, it drives people in schools and paediatric services into thinking that epilepsy isn't considered to be disability, meaning that young people with epilepsy are left to navigate through the symptoms of their condition alone and without proper support. Under the Equality Act 2010, epilepsy is considered to be a disability, and so educational services are obliged to provide necessary support for young people - hence it is important to raise awareness about the support available for those with epilepsy, such as extra time in exams, rest breaks, Disability Student Allowance, accessible accommodation and additional disability services that they are eligible to. Through raising awareness about the support routes available for CYP with epilepsy, it ensures that they are given the chance to succeed within their studies and achieve their academic potential - allowing them to rightfully feel empowered.

Additionally, individualised epilepsy care plans have been proven to be extremely useful in tailoring support to children's' own needs. With the help of our valuable epilepsy nurses, children and their families are able to understand what forms epilepsy beyond just their seizures, enabling them to manage both the medical and lifestyle aspects effectively. This holistic approach ensures that children are ultimately informed about their care and have the tools and knowledge to handle emergency situations, medication routines, and emotional wellbeing - ultimately achieving patient centred care.

All of the above are equally as important in being able to empower children and young people with epilepsy, and help the build their own independent skills to navigate through their condition. By providing them with those supportive tools and involving them in decisions about their care, they can learn that epilepsy does not define or limit them, nor is it a barrier to their success, but instead they can gain the confidence to advocate for themselves, become in charge of their education and pursue their ambitions without hesitation.

Transition and Employment

Young people with epilepsy can often struggle with transitioning into employment, particularly with its associated responsibilities and stressors which can trigger further seizures, in addition to potential discrimination, stigma and disadvantages experienced by epileptic patients in the workplace. The misconceptions surrounding epilepsy can be a key reason to biases in hiring and career advancements, in addition to fear from young people to disclose their epilepsy to avoid negative judgement and losing vital career opportunities. According to the Office for National Statistics, only 34% of people with epilepsy as their main health condition are at work. People with epilepsy often face challenges in securing employment and, according to Trades Union Congress research, earn on average 12% less than non-disabled workers. Despite the symptoms associated with epilepsy, individuals with this condition are fully capable of working. Therefore, a diagnosis of epilepsy should not be a reason to deny someone employment.

But how can employers support people with epilepsy in the workplace? It’s crucial that they offer reasonable adjustments and tailored support, providing those with epilepsy the opportunity to succeed. By offering such assistance and creating a culture of appreciation, employers can empower young people with epilepsy, helping them feel assured in their abilities despite their condition. Furthermore, providing employment opportunities enables individuals with epilepsy to grow in their careers, build essential skills, and work towards full professional competence - a right every person deserves, regardless of disability.

To find out more about the rights of people with epilepsy, you can read more here .

The Power of Speaking Up

Living with epilepsy involves challenges that are often misunderstood or overlooked. Advocacy and speaking up about these experiences can empower not only individuals but also the broader community. Sitawa Wafula’s TED Talk, 'Why I Speak Up About Living with Epilepsy', captures this perfectly. She shares her journey of navigating epilepsy and mental health in Kenya, where stigma is high and support is limited. Her courage to speak openly about her experiences has brought light to these struggles, helping to reduce misconceptions around epilepsy and inspire others to voice their own stories.

Sitawa's talk emphasises that epilepsy goes beyond seizures - it's about navigating everyday life, facing societal expectations, and often managing this journey alone. Her advocacy highlights the importance of creating safe spaces where those with epilepsy can speak without fear, feel seen, and building an understanding of the condition. Especially for children and young people (CYP), learning to advocate for themselves can be transformative. It offers them a sense of control, builds confidence, and lets them know that epilepsy does not limit their potential.

Takeaway

Empowering children and young people (CYP) with epilepsy starts with supporting them in taking control of their care and navigating life's challenges. Transition goes beyond medical consultations, but rather it includes educational, employment, and personal growth to prepare them for life with greater independence. Building independent skills starts with the relationship between CYP and their healthcare professionals, as fostering trust and encouraging self-advocacy equips young people with the confidence to make informed decisions about their health and future.

Ensuring a holistic approach to epilepsy care, alongside raising awareness of support systems available, can lead to a more inclusive environment in education and work. Through the right support and adjustments, CYP with epilepsy can thrive, breaking down misconceptions and allowing them to pursue their ambitions fully. Epilepsy does not limit potential; with understanding and advocacy, CYP can gain both the resilience and resources needed to live empowered lives.

References

UK Government (2010). Equality Act 2010. [online] legislation.gov.uk . Available at: https://www.legislation.gov.uk/ukpga/2010/15/contents [Accessed 31 Oct. 2024].

Wood, G. (2024). Employing people with epilepsy: nothing to fear | British Safety Council. [online] British Safety Council. Available at: https://www.britsafe.org/safety-management/2024/employing-people-with-epilepsy-nothing-to-fear [Accessed 28 Oct. 2024].