It’s back to school time again! As a new academic year begins, Epilepsy Action’s Leanne Creighton asks: are pupils with epilepsy being properly supported? If not – why not?
Pupils with epilepsy are no different to any others in that they have the right to achieve their full potential. It is estimated that there are over 63,000 children and young people with epilepsy under 18 throughout the UK.
Epilepsy Action recently surveyed both schools and parents about epilepsy in education. This was to identify what more needs to be done to help support children and young people with epilepsy. Many need more support to achieve their full potential in an academic setting.
Over 87 per cent (almost nine tenths) of the 179 schools we surveyed said they had at least between one and three pupils with epilepsy. To put this in context, we suspect that over half of these pupils will be underachieving in relation to their intellectual ability. Of all children with epilepsy, between 20 and 30 per cent of them have special educational needs (SEN).
Epilepsy is defined as a tendency to have recurrent seizures. Those seizures temporarily disrupt the messages passing between brain cells. This disruption can stop or mix up the brain’s messages. Of course, the brain controls all the functions of your body. 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. Each person will experience epilepsy in a way that is unique to them. Similarly, the impact that epilepsy can have on your education is also unique. That impact should be accommodated in schools in the best possible way for each pupil.
Epilepsy not being recognised…
Epilepsy is not actively recognised as a condition that may cause SEN. Two main reasons are given for this. The first is that epilepsy does not affect everyone in the same way, so there is confusion about how best to support pupils who are living with it. Of course, many pupils with epilepsy have their seizures well-controlled by medication and experience minimal side-effects. As a result, they do not require any extra support. This only adds to the confusion!
Often, epilepsy is not recognised as the complex condition it really is. Some seizures may be visible – but unfortunately the impact they have on your education may not be. A pupil with epilepsy may find that their condition impacts both directly and indirectly on what they achieve. Seizures may result in a child missing lessons because they are recovering, or may have a negative impact on concentration in class. These are direct effects of epilepsy and may seem obvious.
Other effects are not so obvious. For pupils with epilepsy, their anti-epileptic drugs (AEDs) may affect their ability. The side-effects of medication can cause both short- and long-term memory problems. They may cause difficulties with concentration or how the brain stores information during learning.
Recent studies showed that over a quarter of pupils with epilepsy are not achieving their full potential, according to their teachers. The fact that epilepsy can affect your education – possibly even causing SEN – often goes unrecognised. In turn, that means pupils with epilepsy too often go unsupported.
What the parents say
In 2005, a survey showed 97 per cent of parents were informing their school that their child had epilepsy. In the results of our 2012 survey, that figure has risen to 99 per cent. Parents generally feel that schools should understand epilepsy better. They think that staff should receive epilepsy training – about the condition in general, as well as administering emergency medication.
In this year’s survey, 54 per cent of parents (over half) told us they had been fully involved in discussions with the school about support for their child. However, only 34 per cent (just over a third) felt that the school was genuinely doing everything it could. Parents identified key problems being the lack of both epilepsy training for school staff and effective communication. Many parents said they felt these issues were impacting on their child’s ability to fully participate in school.
What the teachers say
In our survey, 41 per cent of teachers (just under half) said they believe that pupils with epilepsy are not achieving as well as other pupils. Sixty six per cent (nearly two thirds) of teachers said that all children with epilepsy at their school have an individual healthcare plan. However, over 16 per cent (almost a fifth) said no pupils with epilepsy had a care plan – or that they didn’t know whether or not they had.
Less than half of respondents (49 per cent) said that all pupils with epilepsy had an individual education plan (IEP). An IEP is a way of recording any extra help a pupil needs or is receiving through the SEN framework. It sets out what strategies will be used to meet the child’s needs. It helps ensure they are supported in reaching their full potential.
Teachers also reported several factors that are hindering the support offered to pupils with epilepsy in their schools. These were:
• lack of training;
• time constraints within their role;
• not having support from senior managers; and
• lack of support and guidance directly from the government.
Just over half of the teachers surveyed said that some or most pupils with epilepsy in their schools were regularly absent as a result of their epilepsy. On top of this, 43.9 per cent (almost half) said that children with epilepsy were unable to fully participate in lessons. They also said these pupils missed school due to either seizures (42.6 per cent) or appointments related to epilepsy (34.2 per cent). Parents being over-protective (11 per cent) and lack of school support (5.8 per cent) were also seen as potential barriers. These kinds of barriers prevent pupils with epilepsy getting the most out of their school life.
What can we do?
There are certain things we can do to help support pupils with epilepsy to improve their learning and help them achieve – what we call ‘interventions’. There are several very simple interventions that can be put in place.
Whole-school epilepsy policy
What we call a ‘holistic’ school policy doesn’t only take lessons into account. This kind of policy also considers things like break times and school trips – all aspects of a pupil’s school life. A holistic policy that is put in place across the school makes sure pupils with epilepsy are supported appropriately.
The policy should include information about how to assess a pupil to see what support they need to achieve their full potential. It should also include what training staff members will have or how to write an individual healthcare plan (see below). It may cover what other things the school might do to raise awareness of epilepsy.
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.
Establish good communication channels
Communication between all parties is vital and should include the school, the pupil (where appropriate) and their parents or carers. Epilepsy Action’s surveys suggest that all parties know that communication is the key to successfully putting support in place. Unfortunately, for some reason these channels of communication are not being established.
Almost all parents in our recent study told their school about their child’s epilepsy. Despite that, only half (54.5 per cent) of parents felt that they had been fully included in discussions about their child’s epilepsy or its effect on their education.
School staff members should be appropriately trained in how to accommodate epilepsy properly in schools. Only if teachers feel equipped to support pupils with epilepsy can they do it effectively. This is another key element of providing appropriate support.
The training offered to staff members could be general epilepsy awareness, helping them to understand what the condition is and how it impacts on pupils. Alternatively, it may be training in administering medication in an emergency situation.
All children and young people have the right to an inclusive education. Children and young people with epilepsy are no exception. All should have the appropriate support in place to reach their full potential!
For further information about epilepsy and education visit www.epilepsy.org.uk/info/education