schools’ responses to pupils with epilepsy

Schools’ responses to pupilswith epilepsy

MIKE JOHNSON and LISABETH THOMAS

Disability

The White Paper Excellence in Schools (Department forEducation and Employment (DfEE) 1997a) explained theimportance the government attaches to the parents’ role inhelping pupils to learn. The subsequent Green Paper,Excellence for All Children (DfEE 1997b), reiterated that‘This role is nowhere more crucial than for the parents ofchildren with special educational needs’. It goes on tohighlight three dimensions of parents’ involvement: choice,entitlement and partnership:

Choice – We want children with SEN to be educated inmainstream schools wherever possible.Entitlement – We want all parents to be confident thatthey know what the school will do to meet their child’sneeds.Partnership – The knowledge parents have can helpschools make the right provision for their child.

These statements build on the advice given in the Code ofPractice on the identification and assessment of specialeducational needs (SEN) (DfEE 1994a). The relationshipwith parents of children with SEN and the school whichtheir child is attending has a crucial bearing on the child’seducational progress and the effectiveness of any school-basedaction. The school-based stages should therefore utiliseparents’ own distinctive knowledge and skills and contributeto parents’ own understanding of how best to help theirchild (para 2.28/9). The subsequently issued SENCO Guide(DfEE 1998) advised using open, friendly and informal

approaches such as making contact through classteachers first rather than the SEN coordinator (SENCO)and setting up a weekly surgery/clinic at which parentscould discuss their concerns (para 1.11). Later it states,inter alia,

Communication with parents, therefore, should be:non-threatening, clear about how parents can help,encouraging and promising. Teachers should askthemselves: Do staff in school listen, acknowledge andact upon parental concerns expressed?

In 1996 the British Epilepsy Association asked theManchester Metropolitan University to look into the effectsof the Code of Practice on pupils with an epileptic condition.It was decided to do this by interviewing a representativesample of families in three local education authority areas(Cheshire, Oldham and Staffordshire) in which a child hadbeen diagnosed as having epilepsy. Following this, weinterviewed another sample of the school and medicalprofessionals associated with them. The families wereinvited to give us as detailed an account as possible of theirexperiences from having the first intimation that their childmay have a problem. The techniques were based onBrown and Sime’s accounts methodology (1977) broughtup to date by the work of Gillett (1995) and Henwoodand Pidgeon (1995). This methodology gave us theopportunity to develop an understanding of each participant’sindividual experiences and perceptions of events. This inturn enabled us to negotiate the meanings of these eventsand experiences through the ways in which they weredisclosed.

We report here the findings relating to schools which webelieve throw an interesting light on the government’saspirations and certainly support the injunction that themost effective relationships with parents are those based oninformality. Our analysis seeks to demonstrate the range ofexperiences in each case rather than some hypothetical‘average’. At all times it presents the perceptions as reported.We do not claim that any of these are ‘true’, merely thatthey are an accurate representation of what the parentsbelieve to be true.

Support for Learning Vol. 14 No. 1 (1999) 13© NASEN 1999.

Schools will be familiar with epilepsy, a conditionnowadays that is largely containable. Mike Johnsonand Lisabeth Thomas, funded by the BritishEpilepsy Association, have investigated the effect ofthe Code of Practice on pupils with an epilepticcondition. The survey provides an interestinginsight into parents’ relationship with schools andthe corresponding response. The authors provide avariety of suggestions for improving communicationand partnerships.

Information to schools

There is a basic assumption that when a child has a medicalcondition that may affect their education, procedures existto enable liaison between the local National Health Trustand the school. Our findings suggest that this is onlyeffective if a nurse or other ‘medic’ actually visits theschool and deals directly with the staff involved. AsBannon, Wildig and Jones (1992) found, schools areusually first made aware of the condition through theinformation that parents give them about their child and thecondition, as these teachers explained:

• ‘We are heavily dependent upon the parents for allinformation, they are the key.’

• ‘Yes, the vast majority [of information], I think, wouldbe through the parents; yes, they give us all the information.’

Most schools have their own system for eliciting informationabout children’s health. They ask parents to complete aform when their child starts school:

… when a pupil starts at the school, parents are asked tofill in a form and there’s a section on that which asks forinformation about medical conditions. So that’s generallywhere we would get the information from. So if a pupilstarts in Year Ten, there is still that procedure for gettingthe information.

Parents’ comments confirm the fact that schools did elicitinformation in this way. One parent said: ‘And when hestarted at the Senior School we had a questionnaire to fillin, if there was any medical problems, so we put on that,“informed school”. I think that the school should knowabout anything like that.’

Although schools have a system for eliciting information,there is a tendency for it to be filed away and the informationnot disseminated to those who need to know. It also seemsthat what parents feel is appropriate to write on a form maybe far less than they would convey if they were talkinginformally to a member of staff face to face or even perhapswithin a group. There is a focus on the medication that thechild may need to take and the activities that he or shecannot take part in, none of which provides informationwhich the class teacher needs to ensure the child’s day-to-dayaccess to the curriculum.

The schools said that once they receive this information, allmembers of staff and other employees at school should andwould be made aware of the child’s condition: ‘I think wewould need to tell everybody, I mean discreetly in the staffmeetings, because obviously other members of staff willcome into contact with that child – for example, in theplayground on playground duty, or sometimes when theclasses share different experiences and so on.’

However, in many cases schools tend to make it a ‘within-child’condition and to have very differing views as to whether ornot it is something to be kept confidential. Interestingly,

they seem to make up their own minds about this, not inconsultation with the parents. There is also a focus on thepossibility of the child having a seizure, rather than the effectson the child and his/her education. Comments parents madefocus much more on these effects rather than the conditionitself. As a consequence, there can be tensions, as both partiesare perceiving the condition and the child’s experiences atschool from a different perspective. The result can be in abreakdown in communication and mounting frustration.This, in turn, makes for more misunderstandings. There seemsto be a need for a conceptual shift away from ‘the problem’to a view of the child having a life which accommodatesthe epilepsy as one element amongst others. One mightargue that this is only part of a basic paradigm shift from afocus on an assumed commonality amongst most pupils toone which focuses on the diversity between them. Wemight then also start to break down the clear assumptionsof stigma.

The schools that we talked to all said that there wereprocedures in place for the dissemination of informationabout a child’s medical needs through a memo or disclosureat a staff meeting. They were confident that this informationwould always be passed on to the relevant members ofstaff. A SENCO described the system that they have intheir school: ‘This is Kevin [shows file] and this is aconfidential document, a special needs document, but itgives …, all teachers have this, they have an idea about himthrough this information. Epilepsy is just one, every memberof staff has one of these.’

Kevin’s teacher explained: ‘We have a sheet that goes toevery class teacher in every register with the child’s nameon, and against certain names there will be a little asterisk,and it may say, “Ask for inhaler” … so it’s not just for theclass teacher, it’s if there’s a supply teacher in.’

Despite the fact that, as the above quotations illustrate,schools feel confident in the procedures they employ,comments that parents made suggest that in some cases thisinformation system is failing. One parent said:

But it’s like banging your head on a brick wall. I mean Ican’t – I wouldn’t like to count the number of times I’vebeen to this school, you know, to try and get extra helpfor her and to explain the problems yet again, to anotherteacher, who then tells me she will tell everybody elsewho is involved, and doesn’t.

Another talked about an incident when their child ran awayfrom school. Although they had informed the school that thechild had epilepsy, the class teacher was not aware of this:

So I was over at the school. Teacher has a go telling mewhat he’d done and I said, ‘Have you read his reportcard?’ ‘No.’ I said, ‘Why not? … It states on it that he’sa chronic asthmatic and an epileptic.’ ‘I didn’t know.’ Isaid, ‘You’ve been teaching him now for the last fourand a half months and you haven’t bothered to look, toread his card.’

14 Support for Learning Vol. 14 No. 1 (1999)© NASEN 1999.

Another parent said:

They said about one of her English tests that her readingage was way below, and they said she didn’t seem to bepaying attention. And I said, ‘You do know that shesuffers from epilepsy and she could have been having apetit mal attack.’ And they said, ‘Oh no, we didn’t know.I wondered why she didn’t answer me.’ I said, ‘Well, it’sdown’. They had all this information and, in theory, theinformation is supposed to filter through to every teachershe had, his tutor, etc., etc. I have had grave fears thatthat ever happened. The theory was there, the practice Idon’t think was quite so good.

Some parents were confident that the whole school wasinformed about their child’s condition:

When he was diagnosed, when he was at Junior School,when he changed to the new school, they said it wasabsence, this other girl who I spoke to, said the teacherswere all aware of it and they knew they’d to keep an eyeon him … and if they thought that he’d missed anythingin lesson, they would go over it with him.

Another parent also expressed a high level of confidence:

Apparently they’ve got two or three, three or four childrenwho suffer from epilepsy. I don’t know whether it’s thesame sort, epilepsy of some sort. … They’re all aware ofthe outcomes and what they have to do. They’re probablyovercautious about S having a fit.

The above quotation illustrates in-service training throughactual experience as mentioned earlier. Due to having hadprevious pupils who experience epilepsy at the school, theteachers had gained active knowledge through experience,which they could then use. We are less convinced of the valueof ‘information’ via letters, forms or even conventionalin-service training.

A number of parents did talk very positively about schooland felt that they had a great deal to thank them for becausethey were proactive in informing and communicating theirconcerns about their child. In these cases, the schoolbrought it to the attention of the parents that they wereconcerned about the child: ‘He was falling back in classand it was at the new school that a teacher asked me to stopbehind. She thought that [the child] had petit mal. She’dseen it before in another girl in school, a few years earlier.So then we contacted the doctor.’ Here one can see that theteacher was able to use the valuable knowledge gainedfrom previous experience to detect that there may possiblybe similar cause for concern for this child.

Another parent had a similar experience where the classteacher brought to their attention a change in their child’sbehaviour:

[The teacher] put it on her reports that she thought [thechild] was becoming more withdrawn rather than

coming out of herself. Because she’s very, very shy,anyway. And we were sort of watching it … we justthought it was a character thing rather than anythingparticular. Then her teacher asked me one day if I’dnoticed a change in her behaviour at home, and it wasthen that we started to look and we noticed that she wasgoing blank at times.

In the above quotations, one can see the effectiveness ofinformal liaison with parents who, as a result, feel able todisclose their concerns and decide if they want to takeaction, in this case taking the child to see a doctor.Comments parents made suggest that schools may developgreater partnership with parents if they follow a model ofgood practice which creates an environment whichencourages ‘conversational dialogue’ between parents,child and staff. We feel that informal liaison of this natureis essential if a successful partnership is to develop betweenthose involved. The converse will be seen later.

Relationships developed through such informal dialogueenable what might otherwise be serious difficulties to beseen in a less threatening light. This is because both schooland parents have confidence in each other’s ability to shareinformation and to deal with and manage the situation in amanner that both parties feel confident and comfortableabout.

When talking to schools about the sort of information thatthey would want from parents, we found, as did Bannon,Wildig and Jones (1992), that they concentrate on thecondition, not on the effects. Typical comments were:

Well, obviously the first thing would be to ask the parentif this happened at night time or day time, or whether itwas a problem that would happen at unknowing times,or specific times. After that I’d want to know what kindof fit we were talking about … are we talking now aboutpetit mal or … the full fit?

A headteacher said:

What would be likely to set it off – because sometimesit can be flickering lights or television, it can be all sortsof things, can’t it? So what sort of things we ought to getthem to avoid? I mean it has drawbacks for the child inthat, for instance, when they go swimming, if they’reepileptic, they’d have to have their own minder.

The SENCO focused on the possible effects of the conditionin terms of the child’s educational progress. She said: ‘Howthey would affect them in the classroom situation, how theywould affect his work – you know, would special priorityneed to be given in any circumstances?’

Talking in general and or quasimedical terms about theepilepsy does not lead to knowledge that will enhancecurricula access. To do this, one must focus on the individualchild and ask how the condition manifests itself in thatchild and what each teacher needs to do about it. Even the


school that recognised ‘the parents’ side of the case’ wasfocusing on a fit-event and not on the overall life of thechild. Through gaining access to this specific information,staff are then able to create a learning and emotionalenvironment that best meets the needs of the child. Thenext section shows what can happen when ‘medicalisation’takes place.

Taking medicine

Due to the nature of the epileptic condition, in the majorityof cases it is necessary for a drug or drugs to be taken inorder to manage the condition. When discussing this issuewith schools, it was apparent that taking pills at school wasa controversial issue and many schools felt that it wasoutside their remit. As a consequence, parents wererequired to complete consent forms if the ‘administrationof medication’ (the schools’ preferred term) was necessary.The following comments illustrate this.

• ‘But we do have a form, a consent form that the parentsfill in. It’s an official form. If a child needs anything forus to administer then they have to fill this form in andsupply it with the medicine.’ (Notice the ‘distancing’emphasis: ‘It’s an official form’.)

• ‘Well, the parents have to fill in a form of consent toallow you to give them medicine, then a first aider willadminister it.’ (Again, the process is distanced fromeducation by the use of a first aider.)

One school said that even with parental permission theywould not administer any medication for what ever reason,as this headteacher explained:

The policy now is we don’t do medicines. If a child is ill,they’re off. If they’re not ill enough to stay off, they areusually on a medicine which is three times a day, and aswe finish at 3, they can be 9 o’clock, 3 o’clock andbedtime. Or the parent can come up and administerit. The exception is chronic illness, in which case Iadminister it. If I am not here, the nursery nurse will.Nobody else touches it. And the other exception, theinhalers are there.

In the above quotation, the headteacher’s comment suggeststhat if the child needs to take pills, s/he must be ill and if illthen should not be at school. Not only does this approachmedicalise the condition, but also results in children withepilepsy being excluded from school due to this perception.The whole process is divorced from the ‘real life’ ofthe school. The child cannot just ‘take his/her pills’, the‘medication’ has to be ‘administered’. An essential firststep in enhancing the lives of these children is to shift thelanguage of the discourse away from the pseudomedicaland into ordinary speech.

Some staff were aware of the possible side effects ofmedication, whilst others did not seem to have thisimportant knowledge. One who was aware explained:

Well, I’m aware that the drugs involved, if they’recontrolled by drugs … can have an impact upon their –you know, they can feel drowsy. And obviously ifthey’re not alert then they’re not going to receiveinformation so readily, are they, as if they weren’t ondrugs? So probably I would see that as having more ofan impact than perhaps the actual condition itself, frommy knowledge of it.

She spoke about the knowledge that she had about the sideeffects of medication from the experiences that she hadwith a child that she had previously taught: ‘I can onlyspeak from the one child that I’ve taught and I was veryaware that the medication could make him sleepy and thatat times he would not respond as I would expect, but itdidn’t really seem to be a big problem.’

Another teacher commented that because of her lack ofexperience of teaching children who experience epilepsy,she had no knowledge about the possible side effects ofmedication: ‘I don’t know anything about the possible sideeffects of medication. I’ve not taught anyone who hasepilepsy and if I did then I would have to find out someinformation about it. … I’m not well up on side effects ofmedication and that side of things.’

It is essential that staff are aware of the possible side effectsof medication, in terms of both educational implicationsand possible changes in the child’s behaviour so that thechange in the child is not misinterpreted as being somethingelse – that is, being lazy. There are further concerns aboutthe effects of ‘absence’ epilepsy itself which seems to bewidely misinterpreted as ‘daydreaming’. Again, we can seethat knowledge about this issue is generally gained throughexperience, as did Bannon, Wildig and Jones (1992).

In some local education authorities, it is a legal requirementthat schools have a set number of qualified first aiders ontheir premises. In all the schools that we visited, it wasclear that it was considered important that they had firstaiders, and all the schools had them, as the followingcomments illustrate:

Most of my staff, two staff left and two have come, so uptill then all staff had the full qualification first aid, thefour-day course. And these last two are doing it in June,so once again we will have every teacher and nurserynurse will be a fully qualified first aider.

The fact that all the schools said they had a number of qualifiedfirst aiders on the staff can be considered very positivelybecause this ensures that there is a certain level of expertisewithin the school. However, this may be considered negativelyin some respects due to the fact that it can result in certainconditions being professionalised, the consequence ofwhich is that the responsibility is placed solely on the firstaiders to deal with children who experience conditionssuch as epilepsy. This medicalises the condition and placesit in the context of being a disability rather than just oneamongst many factors that affect pupils’ lives.


Professional advice to schools

A few schools said that they would turn to the parentsinitially for advice, as Bannon, Wildig and Jones (1992)found, but the majority said they would get informationfrom medical professionals. One headteacher talked aboutspeaking to the parents first of all and then seeking advicefrom the School Health Service:

If we were concerned about the child’s progress, I meanif we felt that it was a medical condition that wasinterfering with the educational progress, then we wouldbe … discussing with mum, you know, a bit more aboutthe medical condition and telling her maybe it’s a goodidea for us to get some more help advice from theSchool Medical Officer, so that she would be aware thatwe were going to an outside agency for extra help.

The school nurse was considered a valuable resource bystaff: ‘[The school nurse is] a point of contact for me if I’vegot any particular concerns. I can ring her without namingnames obviously, and say, you know, can you give us someadvice, would you pop in and have a chat with me aboutthis. And she will do that.’ (Again, there is uncertaintyabout confidentiality.)

Although schools said that they were very dependent onparents for information and advice, the comments mostmade suggest that if they require any information, their firstport of call would in fact be a medical professional ratherthan the parents. This suggests that schools conceptualisethe condition within a very medical framework, henceadvice and information should be gained from professionalsin a medical setting. It also suggests that ‘education’ andnot ‘life’ is the schools’ first concern.

How teachers felt about having a child with epilepsy inthe class

Bannon, Wildig and Jones (1992) reported in their studythat only 5 per cent of teachers felt confident when dealingwith children who experience epilepsy; 31 per cent feltquite confident; but the vast majority, 64 per cent, said thatthey did not feel confident. Some of the teachers we talkedto also expressed some anxiety, fear and a lack of confidenceabout teaching a child who had epilepsy, because they did notknow what to expect, and, as a consequence, they questionedtheir ability to deal with it a seizure if the child should haveone. The following comments illustrate this.

• ‘You know, you feel like, OK, you’ve been told somethingand certain information, but you think, well, should Iknow more? You know, you feel a little bit in the darkand it’s a bit of a worry, if someone’s going to have a fitin the classroom, or … something’s going to happen, orsuddenly an asthma attack.’

• ‘And it was almost like, you know, we wished he’d haveone so we could get it over with and we’d know whetherwe could deal with it or not … So although we prepared

for it and we found out what we should do, we never gotthe opportunity to put it into practice. And I think weprobably all might have felt better if we had have done,and then we would have known whether we could copeand whether we needed extra training and that sort ofthing.’

When asked to reflect on their experiences, some staff feltthat although things may have been difficult to begin with,because they did not have previous knowledge of thecondition, they considered the whole experience to be alearning process. Consequently, if they were in that situationagain they would be far more equipped to deal with it: ‘It’slike you learn as you go along. I mean until [I taught thischild] I hadn’t taught anyone with it before. If it happenedagain I think that I would be more relaxed about being ableto cope with it.’

A comment that one of the parents made also suggeststhat she felt that having her child in school was a learningexperience for the staff: ‘He had a couple of fits and thatsort of gave them the knowledge, and the confidence. Ithink they were more frightened, actually that … I thinkthey think he’s going to die, then they realised that he’s not,he’s going to come back out of it.’

The comments teachers made support those found byBannon, Wildig and Jones (1992). It is only when schoolsactually experience having a child with the condition that itbecomes a way of life for the staff. Bannon, Wildig and Jones(1992) conclude that those who had previously witnessed aseizure had significantly higher levels of confidence thanthose who had not. We feel that experience enables staff togain confidence in their ability to deal with the pupil andhis/her condition. One way that teachers might get thisexperience, albeit artificial, could be through trainingcourses specifically in epilepsy. Workshops have beendemonstrated to be effective in imparting informationabout epilepsy, improving teachers’ attitudes towards it andbuilding their confidence in their ability to cope withseizures (Rassel, Tonelson, Appolone 1981). If videos andexplanations are given about the condition, teachers shouldthen have an awareness of what to expect and how to dealwith it, which in turn should create confidence in their ownability to deal successfully with the situation. However, thismust be done ‘for real’. They need to have a pupil in mind,preferably with the parents there to make it part of their‘active knowledge’.

Parents’ perception of how schools reacted

The comments parents made about how they thought theschool coped with their child suggest that unless staff hadprevious experience of the condition they were quite anxiousabout what was going to happen:

• ‘His teacher was very frightened. She actually told methat she really was concerned. She kept looking at himfor a few weeks to see if he was okay.’


• ‘Well, I told them he had fits, you know, which madethem very wary of him. The slightest thing and they wereon the phone, you know, come back and pick him up.’

One parent felt that the teacher was anxious when told thather child had epilepsy but the level of anxiety reducedwhen told that the child had absences seizures: ‘When hefirst started, his teacher was quite concerned; she wasn’tsure what to expect. I think she expected a full-blownseizure off him. I think she was quite relieved when I said,“He’ll just go blank and look right past you at whatever hecan see.”’

The second factor involves the way in which the school istold about the condition. Comments that parents makesuggest that it is not enough for a letter to be sent to theschool giving an explanation about the condition. Neither isit enough for parents to go to the school and discuss it withthe staff, as the experiences that these three sets of parentshighlight. It is only when someone whom the staff perceiveto have expertise in this area actually visits the school totalk to them in person about the condition, its managementand possible implications, do the staff begin to feel moreconfident in their ability to deal with the situation in theschool setting. The following comment illustrates this verywell: ‘They did phone quite often with every slight thing,but again I think when the Sapphire Nurse had a word withthem, I think they relaxed more, that I didn’t have to becalled if he’d fallen over.’

This is quite surprising, because we know from otherinterviews that all schools have teachers qualified in firstaid and that the course and refresher courses that they takeinvolves consideration of the response to pupils withepilepsy. What is clearly indicated here is that it is onlywhen faced with a real instance that the knowledge gainedchanges from the inert to the active!

What happens after a seizure at school

In terms of what happened when a child had a seizure,schools feel that they take parents’ wishes as being acentral concern. One headteacher said: ‘We had a standingarrangement that we would phone them if there wereproblems. And they came to collect him on a few occasionsas well.’

Another said:

It would depend … the school nurse would know whatto do in most cases. And if it’s a case of “Yes, we knowthis is happening” … we’d phone the parents and weallow them to sleep it off, and the parents make a decisionabout whether to come and collect them or not … that’show it’s been handled in the past.

However, some of the comments that parents made suggestthat they did not want their child to be sent home after s/hehad had a seizure:

• ‘If she was bad, then they’d ring for us to pick him up,which was okay, but sometimes I thought that maybe itwould have been better had she had slept at school andthen she could have gone back into class and carried on.’

• ‘They dealt with it, but they wanted me to come and takehim home. But it would be nicer if they would allow himto sleep it off in the medical room, but I think, I don’tknow whether they feel they’re vulnerable that way, orwhat, I’m not sure.’

One parent talked about the practical difficulties of alwaysbeing expected to go and pick her child up from schoolwhen she had had a seizure:

They would always ring and ask me to go and pick herup. I can understand why they wanted that because therewasn’t really anywhere that she could go and sleep it off,but at the same time it made it really difficult for mebecause every time I went to the shops I would be thinking,‘Oh, what happens if they ring and I’m not there?’

One of the Specialist Epilepsy Nurses also commented onthe difficulties that parents face when the school expectthem to take their child home after a seizure:

[The parents] don’t even feel that they can go shopping,they have to be by the phone at all times. I have tried toaddress this with the schools, that perhaps all the childneeds is to sleep in a corner of the classroom to recover.But, it’s a major problem for some families. I’ve notfound the ideal solution really for this.

From the comments made above, one can see a discrepancybetween schools’ perception that they are doing what parentswant, and what the parents actually do want. The act ofsending the child home after s/he has a seizure once againsuggests that schools perceive the child as being ill andconsequently should not be in school, rather than seeing thechild as having a condition and the seizure being a symptomof that condition.

Lack of understanding about the condition

Experience of dealing with a number of schools indicatesthat teachers and, sadly, members of the School HealthService still view epilepsy as a simple construct of majorand minor seizures, with very little knowledge about itsmany differing forms, both clinical and subclinical, whichmay be constraining the growth of learning and behaviourin children (Scrambler 1990). Comments that some parentsmade support this and indicate that some staff did not havea full understanding of the child’s condition and how itmanifests itself, despite their assertions to the contrary.Parents felt that they had told the school about the condition,but they still did not seem to understand it. This issue wasalso talked about by one of the Specialist Epilepsy Nurses:

Very often schools see a child who has absence seizures.You know, they think, “There’s no problem here,”


because the seizures aren’t dead dramatic, there’s noproblem, and yet they’re not aware that the child is totallyunconscious at this point, therefore there is a problemthat needs to be looked at and monitored. Some schoolssee it not as a problem at all.

Even after explaining to the school about her daughter’sabsences, one parent felt that the school had no understandingabout the condition which she found very frustrating:

[The teacher said], ‘She wouldn’t be so bad if she didn’tdaydream quite so much, you know, if she paid moreattention she’d get more out of it.’ And I’d say, ‘Well, doyou not think perhaps that this is, you know, the epilepsy?’And they said, ‘Oh, I don’t think so, dear, we would havenoticed that.’ This is the attitude we used to have. AndI’d say, ‘But that is how it manifests itself, you know.’Oh, you know, I was so exasperated I just couldn’t getthrough.

This parent also had difficulty getting the staff to understandthat his apparent daydreaming was in fact absence seizures:

They come to me – well, when I go in, she says, ‘Oh, hehasn’t done much work today’, or, ‘Oh, he seems to havebeen daydreaming a lot today’ … To be honest, I find ithard to talk about the school, because I’m having such ahard time with them, trying to get them to understand.

When talking about her daughter’s education, one parentdid not feel that the school had been much help. Neither didthey understand her condition:

We reckon that she probably missed two years of her –not two years of her education, but with this switchingon and switching off, we didn’t actually know how oftenit was happening. The school weren’t much help, I haveto say, this school here that we sent her to, even thoughwe have told them this fact they still say that she oftendoesn’t pay attention and that she daydreams sometimes,so what can you do?

She told of an incident at school which clearly shows thatthe school had no understanding about the condition at all,an incident that must border on child abuse:

She’s had two lots of detention because she had fits atschool, one in the playground at school. Her teachergave her a red card because she was slumped up againsta wall, and when the whistle was blown, [she] didn’trespond. And because she didn’t respond for 2 minutesthe teacher left her. She got everyone into line, andbecause [the child] still hadn’t responded, she gave her ared card. And she started shouting at her and of course[the child] eventually started coming out of the fit, andcouldn’t understand why everyone was shouting at her,and just went hysterical.

These comments suggest that when seizures are not dramaticthen the fact that the child has epilepsy goes out of teachers’

consciousness, the consequence of which is that thisinformation is placed into another part of their constructsystem. Stores (1979) suggests that this may result in thechild’s change in behaviour being misinterpreted as eithernot paying attention, daydreaming, being lazy and numerousother explanations for which the child may be reprimanded.A study of epileptic children conducted by Holdsworth andWhitmore (1974) found that 42 per cent of pupils withsubclinical seizure activity were described by their teachersas ‘markedly inattentive’. Inattentiveness, in turn, wasassociated with unsatisfactory educational progress andwith difficult behaviour. The comments that parents madehighlights the difficulties that teachers can encounter whenbehaviour such as absences do not manifest themselves ina way that can be defined clearly as normal or abnormal.However, this is not to say that in certain circumstanceschildren may display false absence seizures for one reasonor another. What teachers need to remember is that this isnot an assumption they can automatically make and theyneed to ensure the true nature of the episode. Therefore,we suggest that teachers may benefit from receiving an‘ordinary’ explanation about the condition in order not toovermedicalise it.

Experience that parents recounted suggests that thequestionnaires they completed at the start of school askgeneral questions about their child’s condition. They didnot ask specific questions about how the conditionmanifests itself in that particular child. This informationis vitally important for any class teacher. Teachers need tobe much more clear and sensitive about the nature ofabsence seizures, how they manifest themselves and theirimplications on learning. This is a subtle matter whichrequires a good deal of confidence in both parents and childand requires staff to talk to and with parents about theirexperience of the condition and strategies they used tocome to terms with it.

Lack of co-operation

Comments most of the parents made suggest that theywould like to work collaboratively with staff to gaininformation about medical and educational developmentswith their child. However, it seems that this is not alwaysreciprocated by the school:

She was falling asleep in the playground or at her desk, orthings like that. They would just leave her. [The school]wouldn’t tell me they’d been happening or anything; otherchildren would tell me these things had been happening.You know, when we had them back for tea, and thingslike this. And then I’d go in and ask and the teacherwould say, ‘No, she’s been the same as usual really,’because I needed to know, because at that time they werestill trying to adjust the medication. It was obviouslyaffecting [her] entire life and I needed to know these things.

In contrast, some parents felt that schools were veryco-operative and more than willing to pass on information:


The school were very good, you know, when she hadtime off and things like that. If she had been ill in thenight I could go into school and ask the class teacherwhat they had been doing so that I could help her tocatch up with the work, and [the teacher] would be morethan willing to tell me what they had been up to, youknow.

Another parent also felt that school wanted to be involvedand were willing to give information: ‘They were good likewith things, like, if he’d been badly behaved at school theywould tell me, not in a horrible way, because I had askedthem to tell me if he was naughty at school, like he wasnaughty at home.’

It is apparent that the parents in this sample were more thanwilling to pass on information to the schools about theirchild’s condition. It is equally important that schools alsotry and provide parents with the information that theyrequire to understand the condition further. It is onlythrough a two-way communication system that bothparents and staff can gain a better understanding about thecondition and the way it manifests itself in that particularchild.

Comments from another parent suggest that although theschool was willing to co-operate, they had difficulty doingso because they did not have enough knowledge about thecondition itself to understand the reason for the specialconsideration her child needed: ‘I explained why I neededto know [about recording the seizures] and they said, “Ohyes,” you know, they were very, very pleasant and trying toaccommodate, but they hadn’t got a clue what I was talkingabout, why I needed it.’

Working collaboratively with parents can lead to greaterpartnership between parents and school. This is somethingthat all schools should strive for. If parents do not feelthat schools are willing to work in collaboration withthem, the consequences can be detrimental for the child.Parents are then less likely to communicate valuableinformation to staff which they need to understand thechild and how the condition manifests itself within thatparticular child.

Positive experiences with school

Some parents felt that the school was very good with theirchild and talked positively about their experiences:

• ‘[The class teacher] was absolutely brilliant. She’d meetme after school, in her own time, and she would coax[the child] into the classroom; she would ring her up athome and say, “Come on, I’m waiting for you. Are youcoming to see me?” And [the child] would go. And [theclass teacher] was very tolerant, wasn’t she? … She said,“Do you think we ought to statement her?” So, we startedthe first stages, we filled in some forms, but it neveractually went ahead.’

• ‘The staff from school were lovely about it, weren’tthey? They rang home about it, and some of the childrenhad been quite upset, obviously, to see her having a fitand the year tutor just sat them all down and said, ‘Look,this is it. You’ve got to be nice with [the child].’

• ‘I’ve got an absolutely brilliant class teacher at themoment, he is brilliant. In this class they’re now going tostart going swimming, and I was terrified becauseobviously she’s got to have a one-to-one watcher. And Iwent in to see him about it, and we – my husband wasthere, and he said, “It’s all right, it’s already organised.”So there’s no problem there. So we’re just waiting nowfor them to actually start swimming.’ Compare this withthe school earlier that would not contemplate swimmingwithout a ‘personal minder’.

Another parent was happy with the school:

They were fine, yes. The first teacher she had there wasbrilliant. She asked me if I could take a little picture of[the child] in so that they could put it on the staff roomnotice board, so that the other teachers would recognise[the child], which I think was very nice. That wasreassuring. When [she] went into the Juniors – thatwould be her second teacher – they rang me up about theswimming, you know, to check that I had no problemwith [her] going swimming.

Compare this with the schools that seem to want to shroudepilepsy in some sort of secrecy.

Parents who were very positive about school said:

• ‘I’ve never really met any negative attitudes. Most of theteachers have been pretty good. Most of them haveobviously said, “What are we to expect?” And luckily,when she went into Junior School, even though we’dmoved to a different area, one of the supply teacherswho’d been at her Infant School was then in the JuniorSchool, and she suffered from fits herself. And [thechild] found that she could go and talk to her to find outmore, you know. Because she’s never really knownanybody else, apart from that one teacher, who’s actuallyhad fits.’

• ‘Excellent. They forget it – it sounds awful, that. But theydon’t forget because they know it’s there, and that’s that.’

Conclusions

Bannon, Wildig and Jones (1992) found a lack of propercommunication between parents, medical staff and teachersresults in uncertainty and that the importance of thiscommunication can not be overemphasised. We agree withthem that this could be improved by hospital paediatriciansliaising more closely with colleges in School HealthService and that school nurses are in good position toensure that adequate channels of communication existbetween parents, school and hospital services. Thisincreased level of understanding by all those involved with


the child can only result in greater ‘partnership’. Someschools might then develop greater confidence in theirparents and not feel the need to keep from them informationthey are legally required to give.

We also support Dreisbach, Ballard, Russo and Schain(1982), who suggest that it is imperative that there is asystem of open communication amongst families, medicaland educational professionals. Such a system wouldimprove service delivery for children who experienceepilepsy as a consequence of mutual exchanges ofinformation and observations about the child’s progress. Itis apparent from parents’ comments that they are givingschools all the information that they know about theirchild’s condition but are often constrained by the methodsused to collect it. Parents could also play more of an activerole if, at the start, they understood more about the processof diagnosis and developed a better understanding of thecondition and the complexity of seizure control. This is anarea that general practitioners and consultants should bediscussing at a deeper level with parents. Teachers maythen be able to evaluate more accurately whether a child’sbehaviour is a direct result of the condition or the effect ofanother variable. Through communication with medicalprofessionals, such as Sapphire Nurses, trained to focus oneffects and responses, not details about conditions, teacherscould also gain valuable knowledge and information tomeet individual needs. Bannon, Wildig and Jones (1992)noted that as much as 49 per cent of a child’s waking life isspent at school. Consequently, teachers could have animportant part to play in the management and surveillanceof children with epilepsy. They could give assistance toconsultants in anticonvulsant management of seizuresthrough their recognition of seizure patterns and monitoringthe effects of medication on classroom performance.

Developing greater partnerships between parents, child andprofessionals in both medical and educational settings shouldalways be a primary focus and can only be consideredpositively by all those involved. We believe that mostvaluable relationships and partnerships are encouraged togrow through informal liaison between parents and theprofessionals that they come into contact with. This informalliaison needs to enable all those involved to in some wayconvey in their own terms the information they wish todisseminate and receive in a way that they feel is appropriate.

References

BANNON, M. J., WILDIG, C. and JONES, P. W. (1992) Teachers’perceptions of epilepsy. Archives of Disease in Childhood, 67, 1467–71.

BROWN, J. M. and SIME, J. (1977) Accounts as a General Methodology.Paper presented to the British Psychological Society AnnualConference, Exeter.

DEPARTMENT FOR EDUCATION AND EMPLOYMENT (1994a) TheCode of Practice on the Identification and Assessment of SpecialEducational Needs. London: DfEE.

DEPARTMENT FOR EDUCATION AND EMPLOYMENT (1994b)Special Educational Needs: A guide for parents. London: DfEE.

DEPARTMENT FOR EDUCATION AND EMPLOYMENT (1997a)Excellence in Schools (White Paper). London: HMSO.

DEPARTMENT FOR EDUCATION AND EMPLOYMENT (1997b)Excellence for All Children: Meeting special educational needs (GreenPaper). London: HMSO.

DEPARTMENT FOR EDUCATION AND EMPLOYMENT (1998) TheSENCO Guide. London: HMSO.

DREISBACH, M., BALLARD, M., RUSSO, D. and SCHAIN, R. (1982)Educational intervention for children with epilepsy: A challenge forcollaborative service delivery. Journal of Special Education, 16,111–21.

GILLETT, G. (1995) The philosophical foundations of qualitativepsychology. The Psychologist, 8, 111–15.

HENWOOD, K. and PIDGEON, N. (1995) Grounded theory andpsychological research. The Psychologist, 8, 115–19.

HOLDSWORTH, L. and WHITMORE, K. (1974) A study of childrenwith epilepsy attending ordinary schools. II. Information and attitudesheld by teachers. Developmental Medicine and Child Neurology, 16,759–65.

RASSEL, G., TONELSON, S. and APPOLONE, C. (1981) Epilepsyworkshop for public school personnel. Journal of School Health, 51,48–50.

SCRAMBLER, G. (1990) Social factors and quality of care in epilepsy. InD. Chadwick (ed.), Quality of Life and Quality of Care in Epilepsy(Round Table series no. 23). London: Royal Society of Medicine.

STORES, G. (1979) The schoolchild with epilepsy. School PsychologyInternational, 17–23.

CorrespondenceMike JohnsonDidsbury School of EducationThe Manchester Metropolitan University799 Wilmslow RoadManchester M20 2RR


schools’ responses to pupils with epilepsy

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