Specialist teacher June Massey gives a personal view of the needs of teachers in mainstream schools and post-16 settings – colleges, universities and vocational training providers
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The June 2006 issue of Epilepsy Professional carried an edited version of Professor Brian Neville’s proposed code of practice for students with epilepsy  and an excellent discussion by Elizabeth Anderson, Epilepsy Action’s Eduction policy and campaigns officer, regarding the need for such a proposal .
I wholeheartedly agree with all of the sentiments expressed in the article; a multi-disciplinary approach is essential to identify and accommodate the needs of the students. However, the following question must be asked: can the multidisciplinary team work cohesively and productively if the needs of one of the crucial components of the team, the teachers, are not being met?
Hard-working educationalists will soon have to accommodate an increasing spectrum of needs over an extended age range. This is due to a number of factors, namely the proposed 14–19 initiatives (which will involve changes to broaden curricula and see greater collaboration between schools, colleges and employers to deliver teaching) and raising of the statutory school age to 18. Other factors are the Every Child Matters  programme (which states that children must be “given the support they need to be healthy, stay safe, enjoy and achieve, make a positive contribution and enjoy economic well-being”) and the move towards inclusion of all children with special education needs (SEN) into mainstream schools. We must also bear in mind that difficulties do not miraculously disappear during the transition from statutory education (schooling to age 16) to higher or further education (universities, colleges). The exhausted cry of “I cannot suddenly become an expert in everything!” is frequently heard within all areas of the teaching profession. Ron Radley, retired County Adviser for SEN for Lancashire, believes that “all teachers are teachers of SEN”. But should the responsibility for gaining a working knowledge of the educational implications of epilepsy lie solely on their shoulders?
Steps to success...?
Ms Anderson’s article refers to the European White Paper on Epilepsy, presented to the European Parliament in 2001 , which states that “steps should be taken, as a matter of urgency, to provide courses on epilepsy at both initial and in-service levels (for teachers)”. This means that training should be delivered to trainee teachers, newlyqualified teachers and as continuing professional development for established, practicing teachers.
Teachers can take it upon themselves to access government guidance regarding the medical management of epilepsy . School nurses will deliver, on request, first-aid training for seizures and rectal diazepam training. This may satisfy the government’s current criteria for training, based on a premise that epilepsy is classified as a medical issue.
However, the Special Educational Needs Code of Practice 7:65  states that “medical conditions may have a significant impact on a child’s experiences and the way they function in school.The impact may be direct in that the condition may affect cognitive or physical abilities, behaviour or emotional state”. It must be pointed out that not all children with epilepsy will experience disruption to their learning, but teachers should have the tools to help them recognise when it does.
So what is the current situation regarding training teachers in the educational implications of epilepsy? Does the government have a different definition of ‘urgent’ to those of us working in the field?
My recent research has confirmed that epilepsy as an educational issue is still not a statutory requirement on the initial teacher training syllabuses, in either the statutory or post-16 sectors.The Lifelong Learning UK (LLUK) Initial Teacher Training syllabuses are changing from 2007 and I understand that it may be possible to take modules in supporting students with specific learning difficulties – however, epilepsy is not currently mentioned.
Teacher trainers from LLUK have highlighted the Learning for Living  project, which outlines a proposed vision for the provision of education for learners with learning difficulties and/or disabilities. Future training is mentioned only in broad terms, although one trainer offered to raise the topic of epilepsy at future conferences.
I have tried unsuccessfully to find in-service or Continuing Professional Development courses on the educational implications of epilepsy run by the Department for Education and Skills or LLUK (although I have been informed that LLUK are reviewing CPD in light of the Learning for Living Project).
Schools, colleges and teacher training establishments may have access to the invaluable support, advice and training given by peripatetic advisers in areas of expertise such as dyslexia, but rarely for epilepsy.
I have recently received a response to a query on training and epilepsy from the Department for Education and Skills which states that “decisions as to what training and development opportunities to pursue has to be have determined locally by the individual teachers, their schools and local authorities (LAs) in light of needs, priorities and available resources”.Yet, how can teachers pursue training that does not exist?
At this point I must praise the work of the members of the voluntary sector who give their time and expertise to deliver awareness sessions in schools. Members of the medical profession, including the excellent epilepsy specialist nurses, also provide such a service, often fitted into hectic working lives.
Tutors in the post-16 sector have commented that, according to LLUK advice, they have encouraged students to disclose how epilepsy affects them and have interviewed and worked with students on a ‘need to know’ basis.That is to say, teaching and support is based on the information given by the student and/or parent.
Case in point
I was invited by one tutor to join in the interview process of a student with epilepsy.The student had stated that her seizures were largely controlled by medication. She believed that she may experience absence or partial complex seizures but commented that “these would not be noticeable in class”.At school, she achieved the government benchmark grades for SATs and also gained one ‘B’ grade and five ‘C’ grades at GCSE.
She was, therefore, deemed to have reached the minimum targets for achievement and was not, consequently, a ‘cause for concern’. She was advised, at interview, to undertake a vocational rather than an academic course. It was deemed that she would not need study support as her grades and the perceived impact of her epilepsy did not warrant support.
However, at that point I asked if I could continue with the interview.The student disclosed that she was considering visiting her GP as she felt depressed. She believed that she had underachieved at school due to her epilepsy and feared that she would not have the chance to fulfil her potential in terms of a career.
Clearly the definition of ‘underachievement’ can be crucial. I believe that this should be measured against the student’s potential rather than arbitrary benchmarks.This girl felt frustrated as she sometimes had good days, but regularly had bad days – when “information didn’t go in”. A subsequent psychological assessment showed that her underlying abilities lay in the ‘well above average’ range but that she experienced significant weaknesses in the areas of auditory memory and processing. She showed a strong visual learning style.
A case conference involving tutors, her parents and the student reevaluated her potential and concluded that she should undertake a course of ‘A’ level study. She was given support by a tutor with specific learning difficulties training which accommodated her weaknesses and used her strengths to help her study effectively. I am pleased to report that she went on to study for a degree in art. Interestingly, the tutor who did the initial interview subsequently joined one of my in-house epilepsy awareness sessions.
Having met many parents and teachers who have built good working relationships, I have seen many examples of good practice. However, my advice has often been sought by both parents and teachers, who have expressed concerns regarding the child’s performance in school, but have not had sufficient confidence in their knowledge of epilepsy for a productive dialogue to take place.
Parents and teachers have expressed the view that they are “working in the dark”. Some teachers, mostly due to lack of training and knowledge of the potential impact that epilepsy can have on the student’s learning, have not accepted that erratic or poor performance in learning or behaviour is due to the child’s epilepsy.
I would suggest that training is essential to avoid such situations, thereby making the educational experience a positive one for both students and teachers. It is expected that those in the healthcare and social sectors are appropriately trained to identify and accommodate the needs of young people in their specific disciplines. Should there not be the same expectation of those responsible for their educational experience?
Too much for teachers?
I deliver training in awareness of the educational implications and classroom management of epilepsy. Although this includes descriptions of seizures and how to respond to these, I do not give first aid advice or details of the side effects of AEDs as I am not medically qualified to do so.
Recognition of some seizures, auras and trigger factors appear to be quite unknown territory for many of my audiences. Most feel that they have been given a salutary lesson in the impact of absence seizures when I ask half of the group to close their eyes, put fingers in their ears and count backwards slowly from 30, while continuing the session with the rest of the group.The confusing reality of trying to ascertain what they have missed while keeping pace with the ongoing lesson surprises many.
By the time we have covered difficulties with memory, concentration, information processing (emphasising that these can be sporadic), absence from lessons, behavioural problems and social and emotional aspects, I have seen some teachers fleeing the room to re-evaluate Individual Learning Plans!
This training is delivered in half a day.This is accompanied by a single A4 hand-out devised by Ron Radley and myself which outlines questions that should be asked of a parent (or student post-16) and gives a ‘checklist’ of behaviour to look out for in the classroom . I have yet to receive a comment that this style of training has caused ‘information overload’. Indeed, most have deemed it to have the potential to enhance their practice.
My training has evolved through gaining theoretical knowledge and practical experience over 20 years of working with medical professionals, educators and support staff in mainstream and special schools, psychologists, therapists, parents, carers and – most importantly – students.
I believe that it would not be prohibitive, in terms of time and cost, to form an experienced, multidisciplinary-team to devise a training programme which could be disseminated to all professionals at all stages of their careers.
In order to enable teachers to accommodate young people with epilepsy or remove the barriers that some of these young people encounter in the classroom, they must feel that they are a productive part of a multidisciplinaryteam rather than working in the dark.
Will someone turn on the light, please?
June Massey DipSpLD, AMBDA(FE/HE)
Independent Specific Learning Difficulties Consultant who delivers Specific Learning Difficulties training in a variety of settings.
This article originally appeared in the June 2007 edition of our magazine Epilepsy Professional.
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1. Neville,B. A code of practice for children with epilepsy. Epilepsy Professional, 1:25, 2006
2. Anderson, E. The school rules. A code of practice for education of children with epilepsy. Epilepsy Professional, 1: 22-23. 2006
3. Every Child Matters: Change for Children DfES 2004
4. European White Paper on Epilepsy 2001
5. Managing Medicines in Schools and Early Years Settings DfES 2005
6. Special Educational Needs (SEN) Code of Practice DfES 2001
7. Learning for Living and Work: Improving Education and Training Opportunities for People with Learning Difficulties and/or Disabilities LSC 2006
8. Teacher/tutor checklist for students with epilepsy June Massey and Ron Radley 2001 (revised 2007)