Behaviour and Discipline in Schools
Memorandum submitted by the Joint Epilepsy Council
Background
1.
The Joint Epilepsy Council (JEC) is the umbrella body for 26 epilepsy organisations operating in the UK and Ireland. The JEC also provide the secretariat to the APPG on Epilepsy (APPGE).
2.
Epilepsy is a common serious neurological condition characterised by recurrent, unprovoked epileptic seizures, controlled for many, but not cured, with anti-epileptic drugs. It affects almost half a million people in the UK, that is one in every 131, or 705 in an average constituency. Surgery works in some cases but is only made available to around one-quarter of the children who would benefit from it.
3.
990 people in England die every year of epilepsy-related causes. About 365 of those deaths are young adults and children. Of the total number of deaths, about 400 per year are avoidable. 59% of all childhood deaths are considered avoidable. Although outside the scope of this Inquiry, much needs to be done to improve epilepsy health services.
Introduction
4.
This submission mostly addresses your term of reference relating to "How special educational needs can best be recognised in schools’ policies on behaviour and discipline" although it should be noted that the Department does not formally regard epilepsy as a condition that gives rise to special educational needs.
5.
There is a long history of children with epilepsy not realising their potential in mainstream schools. In the past, epilepsy was poorly understood but we now have the knowledge to support many of these children much more successfully and without major resource implications. The problem has been in translating our modern knowledge into practice in our schools. This could change with more support from the Department. Training and information for education staff is readily available.
6.
Apart from the benefits to the child, improved support will assist, in concert with the improvements required in NHS services, in driving down the high unemployment rate and consequent benefit dependency of people with epilepsy.
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About 60,000 young people under 18 in the UK have epilepsy in the UK
Half of these children are estimated to be under-achieving academically in relation to their intellectual level
Approximately 44,000 children with epilepsy are in education
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8.
On average, there will be one child with epilepsy in each primary school and six children in each secondary school. Because of this roughly even distribution, epilepsy is not usually recognised as a significant issue in most schools.
Effects of epilepsy on achievement
9.
In the case of many of these children in mainstream schools, their epilepsy is only partially controlled. Even for those children whose epilepsy is well-controlled, the effects of the powerful anti-epileptic drugs they are taking include impaired memory and attention and often affect their educational attainment.
10.
The effects of epilepsy, which is a collection of syndromes rather than a single condition, are sometimes obvious (e.g. collapse and trembling) and sometimes hard to identify (e.g. absence seizures, where a child may seem wilfully not to be paying attention but is, in fact, unable to). The nature and degree of the effects of seizure activity and medication varies between children and over time.
11.
Parents and schools therefore often have the challenge of supporting children with wide variations in seizure rates, cognitive ability (there is substantial comorbidity with learning difficulties) and behaviours (there is substantial comorbidity with ADHD and autism spectrum disorders), presumed to be driven in part by the underlying epileptic activity in the brain.
12.
Not all children with epilepsy have special educational needs but individual assessment is required to establish the nature and degree of the impact on their educational attainment and how this might be addressed effectively. That individual assessment is not normally available.
Effects of epilepsy on behaviour
13.
There is a recurrent problem with teachers failing to understand the impact on behaviour that epilepsy has. When there is a clear comorbidity with learning difficulties, autism or ADHD, behaviour issues may more easily be identified as stemming from these conditions. However, in most cases, this comorbidity does not exist and behavioural issues owing to the seizures themselves or the stress placed upon the child by the associated difficulties of stigma, exclusion and cognitive challenges are not recognised as stemming from their condition.
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Examples of behaviour directly or indirectly attributable to epilepsy include:
School absences
Fatigue
Stress
Low self-esteem
Alienation
Depression or hyperactivity related to medication
Bouts of repetitive or strange behaviour
Inattention
Inability to concentrate
Anger or frustration (often related to exclusion from physical activities and school trips or peer, stigma-related, social exclusion)
Various responses to the bullying often experienced by children with epilepsy
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15.
A lack of understanding can lead to admonition from the teacher and other negative responses that create further difficulties for the child already struggling with these other aspects of their condition. The lack of understanding also ensures that the support that may help to overcome the problem is not forthcoming and that the behaviour continues and may be exacerbated. Continuing difficult behaviour can eventually lead to exclusion.
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Often teachers don’t fully understand why a child may appear to lack effort or attention and achieve poorly. Variable behaviour can be misinterpreted as being wilful." Professor Brian Neville (former Prince of Wales’s Chair of Childhood Epilepsy)
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17.
It is difficult to separate the failure to understand and properly address behavioural issues that may arise with children with epilepsy from the more general failure to support them to reach the level of attainment indicated by their intellectual capacity. These failures are inter-related. Good educational support at school will reduce the secondary behavioural challenges.
Departmental position
18.
Epilepsy is defined by the Department as a purely medical condition, in the same category as asthma or diabetes. The comparison with asthma and diabetes is badly flawed. With the proper management of medication, a large majority of children with asthma and diabetes will have little or no educational challenges arising from their condition. That is simply not the case for children with epilepsy.
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There is no reference to epilepsy in the Department’s key SEN documents, The Special Educational Needs Code of Practice and Removing Barriers to Achievement. This latter states that every child has the right to a good education and the opportunity to fulfil their potential. This is not currently the case for children with epilepsy.
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20.
Departmental lack of recognition actively hampers the teacher by failing to provide advice. There is a serious gap in the advice provided by the Department to the teacher.
21.
We are encouraged that Minister Sarah Teather has offered to meet with us in the Autumn and by a dialogue with the Department which included the statements that "there is no question that children with epilepsy should be provided with the appropriate support in school to help them make progress and fulfil their potential" and that "epilepsy is a medical condition which frequently has an impact on learning and well-being".
22.
However, no change in the Departmental position has so far been signalled. We have not had time to consider carefully the new Green Paper but hope that it will prove to be an opportunity to win a better service for children with epilepsy.
Failure to implement Warnock
23.
It is remarkable that the following extract from the key Warnock Report into special education of 1978 remains as valid today as it was at the time. The actions proposed by Warnock still need implementation. Note that the behavioural issue is clearly recognised by Warnock.
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1978 Warnock Report
"11.43 …. We consider that every effort should be made to inform staff in schools and colleges about the facts of epilepsy, how it may be controlled by drugs, what the side effects of these drugs may be and how to manage seizures should they occur, in order to create the right attitudes to children with epilepsy. Lack of full knowledge may cause a child’s activities to be unduly restricted and if the school does not know about the existence of the condition the child may run unnecessary risks. This is an instance where mutual confidence and understanding between parents, doctors and teachers is particularly important.
11.44 Even where satisfactory control of seizures by anticonvulsants is achieved, many children with epilepsy may have serious problems in concentration and behaviour, which affect their learning….Their particular difficulties are not always recognised by schools and colleges, and better arrangements for reviewing their progress are needed….if these children are to be helped to develop their potential to the full."
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25.
Would the Select Committee kindly ask the Department to finally implement this aspect of the Warnock report?
Pilot training outcomes
26.
The National Centre for Young People with Epilepsy (NCYPE) recently reported on a pilot scheme, "Champions for Childhood Epilepsy", which gave free basic epilepsy training to one member of school staff in 21 schools in the Tandridge area of Surrey. An immediate direct result of the pilot was that two young people were referred for assessment and another has been placed on more effective medication.
27.
The pilot revealed that few (if any) teachers understood, prior to training, the impacts epilepsy and medication can have on learning and behaviour. After the training, they were all happy to review the monitoring arrangements for these students.
28.
One school involved in the pilot commented: "The students with epilepsy are explaining to the others how it affects them and how they feel when they’re recovering…..Who better to answer questions than the person who experiences it?"
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NCYPE chief executive David Ford said: "Despite huge medical advances being made in recent years, epilepsy is still very much misunderstood….If the pilot phase of our campaign, which covered a small proportion of young people with epilepsy, can change these young lives, imagine what it could achieve across the country."
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30.
The voluntary sector has the answers to the training issues but to roll out these initiatives throughout the country requires support. Support and advice is available from JEC member organisations the NCYPE, Epilepsy Action and others.
Ofsted report
31.
We appreciate there has been some criticism of the widely publicized Ofsted report into special needs and disability which reported that "inspectors found many pupils would not be identified as having special educational needs if schools focused on improving teaching and learning for all."
32.
If Ofsted is right, we incline to the view that there must be something wrong in a system that finds it so hard to support children with epilepsy but not so difficult to support children who simply need better teaching.
Request for support and offer to give oral evidence
33.
We ask the Select Committee if it will consider making recommendations that will improve the understanding of and the support available to children with epilepsy with behavioural issues in our mainstream schools.
34.
We do not wish to be prescriptive however we believe that a pupil with epilepsy should have a right to an individual assessment of educational support needs and behavioural issues. We also believe that the Department should commit to raising the educational offer to children with epilepsy by bringing into effect the actions laid out in paras. 11.43 and 11.44 of the 1978 Warnock Report into special education.
35.
We would be happy to give oral evidence.
September 2010
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