Epilepsy is one of the most common significant long-term neurological conditions in childhood, and has been identified as a focal point within the NHS England ‘Core20PLUS5’ strategy, aimed at reducing health inequalities for children and young people.
A recent review conducted by the Association of Young People’s Health, working closely with partners Race Equality Foundation, RCPCH &Us and Young Epilepsy has revealed a critical gap in published evidence regarding the experiences of children and young people diagnosed with epilepsy, particularly those from marginalised communities.
The review spoke to children and young people with epilepsy from Black and minority ethnic communities, those living in deprived areas, and those with a co-occurring neuro diverse condition and/or a learning disability.
Findings from this review demonstrate that the voices of these children and young people have often been unheard or underrepresented, emphasising the need for a more inclusive approach.The study specifically highlighted the desire of young people, especially those with learning disabilities and neurodiverse conditions, to have a platform to express their needs and concerns.
Recommendations emerging from the engagement with young people include the following:
1. Improving Information Accessibility: It is imperative to enhance the range of information about epilepsy, tailored to different age groups, communities, and varying needs. This will ensure that children and young people have access to the information necessary to understand and manage their condition effectively.
2. Fostering Peer Collaboration: To empower young people with epilepsy, it is essential to increase opportunities for them to work with their peers in a collaborative effort to co-produce solutions. This approach will help ensure that the solutions offered are relevant and beneficial to those who are directly affected.
3. Tackling Stigma and Raising Awareness: Stigmatization remains a significant issue in communities and schools. To combat this, there is a strong recommendation to introduce stigma-busting and awareness training programs. This will contribute to changing perceptions surrounding epilepsy, making it easier for children and young people to navigate their condition without facing unnecessary prejudice.
4. Enhancing Technological Accessibility: To further support young people diagnosed with epilepsy, there is a pressing need to increase the availability of accessible and user-friendly technology. These tools can provide essential resources and support, making daily life more manageable.
Race Equality Foundation is committed to helping to address these challenges and working closely with the NHS and various stakeholders to support implementation of these recommendations. By giving children and young people diagnosed with epilepsy the opportunity to have their voices heard, we can improve their quality of life and ensure that their needs are met.
Find out more in the engagement report, scoping review and infographic summarising the findings.