Written evidence submitted by Young Epilepsy (CYP0117)





Epilepsy and mental health


Epilepsy is a physical condition, rather than a mental illness. However, research shows that children and young people living with the condition are four times more likely to experience a mental health problem than their peers.


Children and young people with epilepsy are more at risk of experiencing a mental health problem due to a range of factors. This could include the underlying cause of the epilepsy (such as a brain injury), side effects from anti-seizure medication, as well as the anxiety, stigma and marginalisation often associated with living with this condition. 


Mental health support in epilepsy care


Integrated mental health support is recommended as best practice in paediatric epilepsy care, but only 1 in 7 children’s epilepsy clinics (14.5%) in England currently provide this support. People living with long term physical conditions, such as epilepsy, are likely to suffer more complications if they also develop mental health problems, increasing the cost of care by an average of 45%.


A recent Young Epilepsy survey showed that in paediatric epilepsy care, less than half of young people said their epilepsy doctor or nurse spoke to them about how the condition could impact on their mental health. Many young people called for better support on how epilepsy affects mental health. The experience of the pandemic may have had a further impact on mental health, with 63% of young people with epilepsy experiencing a deterioration in mood during lockdown.


Emerging research is showing that integrated mental health support can be delivered in paediatric epilepsy clinics in a cost-effective way. As part of Young Epilepsy’s research partnership, UCL GOS-ICH is currently trialling an online assessment and talking treatment (delivered over the phone) to help identify and treat mental health issues in children and young people with epilepsy. The pilot study was successfully completed and a randomised controlled trial is currently underway.


The NHS Long Term Plan emphasises the need for greater integration of care, including increased recognition and resourcing of mental health support. The Long Term Plan also commits to expanding and equipping paediatric clinical networks to improve the quality of care for children with long term conditions, including epilepsy.


Young Epilepsy welcomes NHS England’s vision for delivering integrated care for children and young people. However, it is crucial that there is a clear expectation and sufficient resource for all paediatric epilepsy clinics to deliver integrated mental health support as part of children’s epilepsy care. This is particularly important in the context of emerging NHS reforms to healthcare commissioning, including the future of Best Practice Tariffs and the framework for decision-making in Integrated Care Systems.



Mental health support in schools for children with medical conditions


Young Epilepsy welcomes the Government’s increased investment in mental health support for children in schools. However, there appears to be a disconnect between this programme of work and schools’ existing duties to support children with medical conditions, which include both physical and mental health needs.


Schools have a legal duty to support children with medical conditions (both physical and mental) ‘so that they can play a full and active role in school life, remain healthy and achieve their academic potential’. This includes schools having a specific medical conditions policy, individual healthcare plans (IHPs) for children and training for staff. IHPs should consider pupils’ broader needs, including any learning or emotional support that the child might need.


It is important that pupils’ physical and mental health needs are considered together. ‘Future in Mind’ highlighted evidence showing that having a long term physical condition increases the risk of children and young people experiencing mental health problems. In order to support vulnerable groups of children and young people, it is vital that Mental Health Support Teams understand the increased risk of mental health problems that children with epilepsy, and other long term conditions, are faced with. These teams should also work closely with the existing healthcare teams of children with physical conditions (such as epilepsy specialist nurses) to ensure holistic support is provided.


A Young Epilepsy survey found that 1 in 3 children with epilepsy did not have an individual healthcare plan (IHP) at school and 1 in 3 families did not know if their school had a medical conditions policy, despite the fact that guidance makes clear that this should be ‘readily accessible’ to parents.


Young people and parents may be unaware what arrangements their school has for supporting children with health conditions as there is no requirement for schools to publish their medical conditions policy online. Young Epilepsy calls on the Government to introduce such a requirement, to ensure families know what support is available from their school.



May 2021