Is epilepsy a hidden disability?

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Epilepsy is no stranger in our classrooms, but fear and lack of understanding can increase the burden on children with this chronic condition

According to the charity Epilepsy Action, epilepsy is the second most common neurological condition in school-age children after migraine. It tends to be classed as a chronic medical condition, along with anaphylaxis, diabetes and asthma. Yet, while most of us can probably bring to mind children we know with diabetes or asthma, how many can we think of that have epilepsy?

While we are becoming much more inclusive in our thinking about children with certain medical conditions, epilepsy can make some people feel uneasy and uncertain about what to expect and how to cope if “something happens” while a child is in their care.

One young man said rather bitterly to me recently: “Staff just see the fit and not the person. That’s why they call me an epileptic. But I am not an epileptic; I am a person with epilepsy. I know what help I need. All they need to do is ask me.”

In 2007, Professor Ann Lewis and colleagues from the University of Birmingham carried out a study to explore the attitudes of young people towards epilepsy. Amongst other research findings, she found, unsurprisingly, that many of the children reported that they felt more apprehensive and anxious about their epilepsy at school than at home, and expressed the wish that teachers and other members of school staff had a better awareness and understanding of the condition.

With so many places to access information about medical conditions these days, it may seem odd that there is still an apparent lack of knowledge within children’s services about the impact epilepsy can have on a child’s learning and general quality of life. When information is provided, often in hospitals or through specialist service providers, it can be quite medically focused, for example, on the range of treatments available or the types of medication available and their potential side-effects. What’s more, in these days of increasing concern about litigation and health and safety management, the tendency is to focus on risk and risk assessment even in schools.

While these issues are important, it is crucial not to lose sight of the child or young person as someone with the same types of thoughts, feelings, wishes and preferences as anyone else.  We need to take particular care to ensure that children and young people with epilepsy have access to the same rights, risks and responsibilities as others, in accordance with the Every Child Matters agenda.

Epilepsy affects children and young people in a number of different ways and with varying degrees of severity. It can start at any age, although the majority of childhood epilepsies tend to be diagnosed before a child’s fifth birthday. Except around the onset of puberty, its incidence tends to decrease through adolescence, not rising again in the general population until post-65 years of age. The seizure, or “fit”, can be caused by excessive electrical discharges and is a symptom of an underlying difficulty in a part or several parts of the brain. As there are different types of seizures, so there are different kinds of epilepsy.

In planning the support that the child will need to access learning and remain safe, it is essential to consider both the school and the wider community contexts. Support planning will also depend on which part of the brain is affected, the age at which seizures start, the frequency of these episodes and how the child may feel before and after he or she has had a seizure.

Another interesting finding of Ann Lewis’s study was that children in schools expressed the desire to help one another; they wanted to know more about epilepsy and other health-related conditions so they could support their peers. The structures to enable this are already in place, through pre-existing peer support, mentoring and other schemes which have already been proven to work to good effect with children and young people, for example, needing emotional support.

However, support is not enough if it is not combined with the sharing of good quality information and clear policy and guidance implementation. This is why some schools have a distinct medical conditions policy to support children with epilepsy and other long term or chronic medical conditions. Other schools have linked this in to their Healthy Schools Policy. However, while this is a useful part of a school’s management strategy, it tends to focus on the child as someone who could potentially need first aid or emergency treatment; support for such children should consider a much broader remit.

The issue of whether or not the knowledge that a pupil has epilepsy should be shared with his or her peers is often the subject of much debate. This decision should be made on a case by case basis and reviewed not just annually, but also when statutory assessment points are imminent.

Some families choose not to disclose that their child has epilepsy, perhaps because they fear that the child will be bullied, stigmatised, singled out for unwarranted attention or restricted from joining in activities that the family feel, rightly or wrongly, they should be given the opportunity to participate in. In secondary schools in particular, adolescents have been known to go to considerable lengths, when they are able to defer seizure onset, to try to ensure that a seizure does not occur during the school day. Such avoidance techniques include truanting, hiding in the school toilets and school refusal.

How can we, therefore, ensure that a school accepts and supports children with epilepsy and makes sharing information with relevant others as easy and unintimidating as possible? Certainly, a whole school approach is the ideal which we should be striving for, where all teachers, support staff and children are aware of what epilepsy is and how they can best assist in creating a welcoming, inclusive, accepting and supportive environment from day one.

Ideally, the headteacher, year head, SENCO or person with responsibility for organising support should meet with the pupil’s parents or primary carer prior to the first day of school to establish the child’s learning, social and medication support needs. The school may also have access to a specialist epilepsy nurse who can talk over any concerns expressed. If possible, and if the child is of an age where such a meeting would not be too daunting an experience for them, he or she should be present at the meeting. Indeed, every effort should be made to ensure that the child’s voice is heard, acknowledged and respected throughout the process.

The aim of this exercise is not to find potential barriers to achievement, but to identify what the particular child can do. This approach allows time for any issues raised to be addressed before the first day of attendance. All concerned can share in making and taking responsibility for the decisions made, and ensure that the child’s needs and best interests are at the heart of all discussions.

Prior to or shortly after school entry, it is important to consider whether any special arrangements need to be put in place regarding access to learning, the taking of tests and examinations, and participation in certain activities that might be seen to have an increased risk attached to them, such as working in a science lab, swimming or going on school outings. A risk assessment can be easily undertaken and, if this is done jointly with parents, the young person and relevant staff, the danger of misunderstandings, conflict and incorrect information exchange can be minimised.

Evidence may need to be collected for a period of time prior to applying for special circumstances arrangements so they can be in place in good time before assessed coursework, tests or examinations are due. Forward planning is also useful when undertaking transition planning because collecting the requisite evidence from GPs and other allied health professionals can be both frustrating and time consuming.

When carrying out research into the management of support for students with disabilities and SEN, aged eleven to seventeen years, taking tests and examinations, I was startled to find how many said they had not been consulted about the type of support they would prefer. They felt that school staff presumed they would, for example, prefer to take the test in a room on their own, rather than with their peers, when in fact they felt that this singled them out as special or different, thus subtly accentuating exactly what the school was endeavouring to avoid. These issues can be just as important for pupils with medical conditions, such as epilepsy.

In conclusion, we must ensure that we heed the advice professionals give regarding the management and treatment of seizures when they occur, and when to call emergency services. However, it is not sufficient to look solely at advice from GPs, consultants and other medical professionals involved with the child or young person with epilepsy. We need to make sure that statutory support mechanisms work for the student, not the reverse. We must ensure that there are clearly defined, responsive channels that parents can use and rely upon with confidence when liaising with a named individual in school about any changes or adjustments that need to be put in place. Above all, we must listen to the child or young person with epilepsy, pay due respect to what they say and take full account of their needs and wishes.

Further information

Dr Gill Parkinson is a Senior Lecturer in Neuropsychology & Complex Learning Disability at the School of Education, University of Manchester:
www.education.manchester.ac.uk

Article first published in SEN Magazine issue 46: May/June 2010.

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