Pupils with epilepsy are no different to any others and have a right to achieve their full potential
It is estimated that there are around 63,400 children and young people under the age of 18 with epilepsy in the UK.
Epilepsy Action recently surveyed schools and parents about epilepsy in education. The aim was to identify what more needs to be done to support children and young people with epilepsy to achieve their full potential in the academic setting.
The survey showed that more than 87 per cent of 179 schools surveyed said they had at least one to three pupils with epilepsy in their school. It is anticipated that over half of these pupils will be underachieving in relation to their intellectual ability. In children with epilepsy, there is a 20 to 30 per cent prevalence of SEN.
Epilepsy is defined as a tendency to have recurrent seizures (sometimes called fits). A seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the normal message passing between brain cells. This disruption results in the brain’s messages becoming halted or mixed up. The brain is responsible for all the functions of your body, so what you experience during a seizure will depend on where in your brain the epileptic activity begins and how widely and rapidly it spreads. For this reason, there are many different types of seizure and each person will experience epilepsy in a way that is unique to them.
An unrecognised condition
Epilepsy is not actively recognised as a condition that may cause SEN. There are two main reasons for this. First, epilepsy does not affect everyone in the same way, so there is confusion surrounding how best to support these pupils. Many pupils with epilepsy have their seizures well controlled by medication with minimal side-effects and therefore do not require any extra support.
Second, epilepsy is often not recognised for the complex condition it is. Seizures can be seen but their effects on an individual’s education may not be. For pupils with autism or dyslexia, for example, it is primarily their condition that impacts on their ability to learn. For pupils with epilepsy, though, it may be the drugs that affect their ability to learn. Alternatively, it could be that they miss a lot of school because they are having seizures. Without some recognition of the fact that having epilepsy can affect an individual’s education with the possibility of SEN, pupils with epilepsy too often go unsupported.
A pupil with epilepsy may find that his/her condition impacts both directly and indirectly on his/her attainment. There may be an educational impact of seizures or of the medication used to control them. Seizures may result in a child missing lessons or may have a negative impact on concentration. The side-effects of medication can cause both short- and long-term memory problems, difficulties with concentration and information retention. Recent studies showed that over a quarter of pupils with epilepsy are not achieving their full potential according to teacher respondents.
What do parents think?
In 2005, a survey showed that 97 per cent of parents of children with epilepsy were informing their school that their child had epilepsy. In 2012, this has risen to 100 per cent. Parents generally feel schools should understand epilepsy and that staff should receive training, both about epilepsy generally and regarding administration of emergency medication. Fifty four per cent of parents told us they had been fully involved in discussions with school about support for their child. However only a third (34 per cent) felt that the school was doing everything it could. Parents identified the key issues within education as lack of training for school staff and communication. Many parents said they felt these issues were impacting on their child’s ability to fully participate in school.
What do teachers think?
More than 40 per cent of teachers believe that pupils with epilepsy are not achieving in line with their peers. Almost two thirds of respondents said that all children with epilepsy at their school have an individual healthcare plan. However, almost a fifth (16.8 per cent) said no pupils had a care plan or that they didn’t know if pupils with epilepsy had a care plan. Less than half of respondents (49 per cent) said that all pupils with epilepsy had an individual education plan.
Teachers also identified that the support in their schools for pupils with epilepsy was being hindered by lack of training, time constraints within their role, not having support from senior managers and lack of support and guidance directly from government.
Just over half of the teacher respondents said that most or some pupils with epilepsy in their school were regularly absent as a result of their epilepsy. To add to this, almost half of respondents said children with epilepsy were unable to fully participate in lessons (43.9 per cent) and that they missed school due to seizures (42.6 per cent) and appointments related to epilepsy (34.2 per cent). Parental over-protection (11 per cent) and lack of school support (5.8 per cent) were also seen as potential barriers for pupils with epilepsy.
What can be done?
There are some simple interventions that can be put in place to help support pupils with epilepsy to achieve:
Whole school epilepsy policy
A holistic policy written and in place across the school makes sure pupils with epilepsy are supported appropriately. The policy should include information about how to assess a pupil for support to achieve their full potential, what training staff have or will be attending, how to write an individual healthcare plan (see below) and what other things the school may do to raise awareness.
An individual healthcare plan (IHP)
All pupils with epilepsy should have an individual healthcare plan (IHP), even if their seizures are well controlled. Everyone should be involved in writing the IHP including the school, parent or carer and pupil (where appropriate). An epilepsy specialist nurse or school nurse should also be involved.
Communication between all parties including the school, parents and pupil (where appropriate) is vital. Epilepsy Action’s surveys suggest that although all parties deem this to be the key, communication isn’t being established. Only half of parents felt that they had been fully included in discussions about their child’s epilepsy and education.
General awareness training to help school staff understand epilepsy and specific training on the administration of medication are essential if staff are to feel properly equipped to support pupils with epilepsy.
All children and young people have the right to an inclusive education. Children and young people with epilepsy are no exception and all should have the appropriate support in place to enable them to reach their full potential.
Leanne Creighton is Education Policy and Campaign Officer at Epilepsy Action: