Memorandum submitted by Epilepsy Action
1. Epilepsy Action is the UK's largest member-led epilepsy charity. It provides support and advice for people with epilepsy and their families; and campaigns to improve the quality of statutory services in the education, health and social care sectors.
2. Epilepsy Action believes that although statutory processes exist to eliminate the disadvantages faced by people with disabilities during assessment and testing, these processes are not always applied effectively for people with epilepsy.
3. Epilepsy Action welcomes the opportunity to present evidence to the Education and Skills Select Committee about testing and assessment.
4. This document presents some key background information about epilepsy and education, and then addresses several areas being investigated by the Committee.
5. The submission concludes with recommendations Epilepsy Action would like the government to address.
Epilepsy and education
6. Epilepsy affects one in 242 children and young people of school age. This means that there are approximately 60,000 children and young people with epilepsy in UK schools.
7. Epilepsy is one of the most common neurological conditions. People with epilepsy experience recurrent seizures, unless the seizures are controlled by medicine. There are approximately 40 different seizure types, and about 52 per cent of all people with epilepsy have their seizures controlled. A seizure occurs when the nerve cells in the brain stop working in harmony, and the brain's functions are disrupted for a short time. It is important to note that not all seizures are obvious to observers. Some types of seizure, such as absence seizures, may not be obvious, but may have a significant impact on learning. Epilepsy can also lead to difficulties with memory, concentration, communication, behaviour and learning. The medication used to control seizures may have side effects that can affect education, such as drowsiness, confusion, memory problems and headache.
8. People with epilepsy can face uncertainty and lower than expected achievement during assessment and testing. This can be due to factors such as:
· Seizures (before or during an assessment), including less dramatic seizures such as absences
· Learning difficulties and disabilities that are recognised as Special Educational Needs (SEN)
· Difficulties that are not recognised as SEN. For example memory problems caused by epilepsy, or low level epileptic activity that can disrupt brain function without causing visible effects
· The effects of medication such as drowsiness or memory problems
9. Although statutory frameworks exist to prevent disability discrimination in the formal assessment processes, Epilepsy Action believes these are not being applied effectively. Children and young people with epilepsy are underachieving in assessments because their individual needs are not being understood or met. Measures to adapt assessment processes, to take account of learning difficulties and disabilities, are more often used effectively as long as a history of SEN provision exists. Where an individual with epilepsy has no history of SEN provision, or their epilepsy is viewed (often wrongly) as a purely medical need, they are at risk of underachieving.
10. The following quotes show the lack of support in formal assessments that people with disabilities are still experiencing.
"[epilepsy is] ruining my life i was to take gcse exams today 24 nov but had a seizure in the morning couldnt go to school so now i will be put down on exam as failed"
"As I was hospitalized, I missed my last final examination. Up until then I was on for a 'First'. The examination board refused to let me take my last exam when I came out of hospital. They eventually caved in and gave me a 2:2."
11. The risk of underachievement in formal assessment is likely to be one of the factors damaging employment prospects for people with epilepsy. Around 14 per cent of people with epilepsy are unemployed but actively looking for work, compared to 9 per cent for disabled people on average.
12. Epilepsy Action welcomes the opportunity to comment on several of the questions raised by the House of Commons Education and Skills Select Committee.
13. National Key Stage tests
· What role does assessment by teachers have in teaching and learning?
Teacher assessment can be extremely valuable for learners with epilepsy. The condition often leads to erratic progress in education, and attainment can vary widely from one day to the next. For this reason, teacher assessment is more likely than formal tests or exams to give a reliable guide to the progress of a learner with epilepsy. Personalised assessment could also be very useful for learners with epilepsy, who will be aware of their own progress and achievements.
14. Testing and assessment at 16 and after
· Is the testing and assessment in "summative" tests (for example, GCSE, AS, A2) fit for purpose?
It is important that the needs of learners with epilepsy, and other disabilities, are considered during the design and application of statutory assessment processes. Although there are statutory frameworks and guidance in place to protect people with disabilities in the assessment and testing process, Epilepsy Action feels that these are not being applied effectively for people with epilepsy. The frameworks and guidelines need to work for all people with disabilities: schools and settings must be encouraged to make the necessary arrangements so that people with disabilities are not discriminated against in the assessment process. Schools, settings, and the organisations that oversee and carry out statutory assessment have a responsibility to encourage learners with disabilities, and their families. In some cases, these organisations are not proactive enough in making individuals aware of their entitlements and the flexibility that exists in the statutory processes.
· What are the benefits of exams and coursework? How should they work together? What should the balance between them be?
For some people with epilepsy, coursework represents a fairer picture of their attainment than more structured testing regimes. Epilepsy Action is concerned about the future emphasis on controlled assessments instead of coursework. When learners with epilepsy have freedom to work at a pace and time that suits them, they have fewer difficulties completing the work. We would recommend the government to consider alternative methods of addressing problems with plagiarism. Forcing learners to carry out controlled assessments brings many of the same problems that exist in formal exams and tests for learners with epilepsy.
· Is holding formal summative tests at ages 16, 17 and 18 imposing too great a burden on students? If so, what changes should be made?
Stress can be a trigger for seizures. Learners with epilepsy are often at risk of increased seizures caused by the stress of assessments, and the effect of these seizures is to damage their ability to perform effectively. Schools, settings and the organisations who oversee exams and assessment need to be aware of these factors. They should ensure that learners with epilepsy are aware of any arrangements that are put in place to address their disability. For example a student who has been unable to sit an exam due to a seizure maybe be able to re-sit the exam without penalty. Knowing that a seizure is not going to cause a student to fail the exam may reduce the stress and help reduce seizures.
· How does the national assessment system interact with university entrance? What does it mean for a national system of testing and assessment that universities are setting entrance tests as individual institutions?
The protection of the statutory frameworks and guidance is vital for students with disabilities. The concern with individual university entrance tests is that the same methods of preventing discrimination may not be applied and therefore students with disabilities may be at a disadvantage.
Conclusions and recommendations
18. Following on from the steps outlined above, Epilepsy Action has identified several key areas for urgent attention by the government. More detailed information about the issues outlined in this submission is available from Epilepsy Action.
19. The government recognises the difficulties faced by learners with disabilities in the education system. Difficulties recognised by the SEN framework are generally provided for. However, provision for individuals with other difficulties and disabilities is patchy. Epilepsy Action would welcome a commitment by the government to ensuring that assessment is applied fairly and with regard to the statutory guidelines for learners with disabilities.
20. Epilepsy Action notes that coursework and teacher assessment may be more accurate methods of assessment for some learners with epilepsy and other disabilities. For this reason the government must ensure that adequate facilities exist to ensure the fair assessment of all learners.
21. Epilepsy Action would welcome the opportunity to expand on this evidence and present oral evidence to the committee.
 Epilepsy prevalence, incidence and other statistics. Joint Epilepsy Council: Leeds. 2005.
 Moran et al., Epilepsy in the United Kingdom: seizure frequency and severity. Seizure 6, 425-433. 2004.
 Positive action in education. Epilepsy Action, Leeds. 2007.
 Lewis et al., Understanding of epilepsy by children with, or without, epilepsy. Epilepsy Action, Leeds. 2007.
 Epilepsy and Higher Education: Your Views. in Epilepsy Today (issue 69) Epilepsy Action, Leeds. 2004.
 Epilepsy and Employment. Epilepsy Action, Leeds. 2007.
 Office of National Statistics, Economic Activity of Working Age People with Disabilities. 2006.
 Epilepsy in schools: parents' experiences. Epilepsy Action, Leeds. 2006.