Mukherjee 2000

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The inclusion of pupils

with a chronic health
condition in mainstream
school: what does it mean
for teachers?
Suzanne Mukherjee , Jane Lightfoot &
Patricia Sloper
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To cite this article: Suzanne Mukherjee , Jane Lightfoot & Patricia Sloper
(2000): The inclusion of pupils with a chronic health condition in mainstream
school: what does it mean for teachers?, Educational Research, 42:1, 59-72
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Educational Research Vol. 42 No. 1 Spring 2000 59–72
The inclusion of pupils with a

chronic health condition in
mainstream school: what does
it mean for teachers?
Suzanne Mukherjee, Jane Lightfoot and Patricia Sloper,
Social Policy Research Unit, University of York, Heslington, York YO10 5DD
Summary
This paper reports on a study which investigated the support needs of pupils
in mainstream school with a chronic illness or physical disability. The research
was carried out in three local education authorities covering both rural and
urban areas. In-depth, qualitative data were collected from 33 pupils in second-
ary school; 58 parents of primary and secondary school pupils; and 34 primary
and secondary school teachers. Overall, the data from young people suggest
variability in the support offered to pupils by teachers, even by teachers within
the same school, and highlights the importance of teachers’ awareness and
understanding of special health needs. A number of areas where young people
need support from teachers were identified, including: dealing with school
absence; taking part in school activities; peer relationships; explaining the con-
dition to other pupils; and having someone to talk to about health-related
worries. Data from teachers and parents indicate that school staff need assist-
ance with obtaining health-related information; ensuring health-related infor-
mation is passed between and within schools; providing emotional support; the
provision of medical care; and coordinating support for this group of pupils.
The implications of the findings for teachers, schools and educational policy
are discussed.
Keywords: chronic illness, physical disability, mainstream school, pupils’ views,

teachers’ views
Acknowledgements
We would like to thank the young people, parents and teachers who took part in the study.
The research was funded by the NHS Executive National Research and Development
Programme, Mother and Child Health Initiative (Grant ref. MCH:L 13-9). The views
expressed in this paper are those of the authors and not necessarily those of the NHS
Executive.
Address for correspondence: Suzanne Mukherjee, Social Policy Research Unit, Uni-
versity of York, Heslington, York YO10 5DD, UK.
Tel: 01904 433608. Fax: 01904 433618. E-mail: skmwl@york.ac.uk
Educational Research ISSN 0013-1881 © 2000 NFER

60 Educational Research Volume 42 Number 1 Spring 2000
Introduction
While pupils with some chronic illnesses, such as asthma, diabetes and eczema,
have traditionally been educated in mainstream schools, in recent years a growing
number of pupils with long-term and sometimes complex needs have also been
included in mainstream school. This trend is in uenced both by the introduction
of a national policy in the UK for more inclusive education in 1981, and advances
in medical technology, which mean that more children are surviving and manag-
ing their condition. Some of the most prevalent chronic conditions among
children are: asthma (12 per cent); eczema (8–10 per cent); diabetes (1.8 per
cent); epilepsy (0.26–0.46 per cent); congenital heart disease (0.2–0.7 per cent);
cerebral palsy (0.2 per cent); and cancer (0.17 per cent) (Edwards and Davis,
1997; GB. Parliament. House of Commons Health Committee, 1997; Botting
and Crawley, 1995). Although the numbers of these children are relatively small
in relation to the whole school population, they do suggest that most medium to
large secondary schools would include affected pupils.
Given appropriate support, attending school can be particularly bene cial to
children with chronic health conditions. Parents of children who have been absent
from school because of an illness or accident have commented on the value of
school as an aid to recovery, and as a context in which children can succeed,
experience friendship and be distracted from their illness (Bolton, 1997; Closs
and Burnett, 1995). However, there is research evidence that children with
chronic health conditions are at greater risk than their peers of developing
psychosocial and academic problems (Wallander and Varni, 1998; Howe et al.,
1993; Eiser, 1990a; Fowler, Johnson and Atkinson, 1985). Such ndings are of
signi cance to service providers, in that they suggest that even if children with
chronic health conditions are receiving medical care which enables them to be
well enough to attend school, they may not be receiving the support they need to
manage their condition within the context of their everyday life.
So what is the appropriate support for this group of pupils? Studies of parents’
and teachers’ views indicate a number of aspects of school life which are dif cult
for children and where help might be needed. These include dif culties in rela-
tion to managing the condition itself; dealing with school absence, including
keeping up with the curriculum and reintegrating with peers; and managing
school social life (Shaw, 1998; Lynch, Lewis and Murphy, 1992; Larcombe et al.,
1990; Freudenberg et al., 1980; Henning and Fritz, 1983). However, caution is
needed in drawing conclusions from this research since there is evidence that
parents are not a reliable source of information on their child’s perspective
(Beresford, 1997). There is very little research in which children have been con-
sulted, so we do not know what assistance pupils themselves would like to help
them overcome the dif culties they encounter.
Within the school context, teachers are a major source of support for young
people. Therefore it is important that teachers feel well equipped to respond to
the speci c needs of this group of pupils. However, a number of studies have
found that teachers are ill-informed about a range of conditions (diabetes, cancer,
leukaemia, epilepsy and asthma) and have particular dif culty knowing how to
deal with emergencies, and how much to ‘push’ a child to keep up with school
activities, both academic and physical (Court, 1994; Lynch et al., 1992; Chekryn,
Deegan and Reid, 1987; Eiser and Town, 1987; Charlton, Pearson and Morris-
Jones, 1986; Bradbury and Smith, 1983; and Eiser, 1980). In addition, teachers
have reported feeling worried about dealing with the reactions of other pupils
Pupils with chronic illness in mainstream school 61
(Eiser and Town, 1987); the time involved in helping the child to keep up with
school work (Eiser, 1990b; Eiser and Town, 1987; Henning and Fritz, 1983);
knowing how to discipline a child with a chronic illness (Chekryn et al., 1987);
and dealing with the child’s emotional reaction to their condition (ibid.).
UK studies which have asked teachers how they would like to receive infor-
mation and advice about pupils with special health needs indicate a preference
for contact with health professionals (Eiser and Town, 1987; Charlton et al., 1986;
Bradbury and Smith, 1983). However, the research available – albeit limited – on
communication and collaboration between health and education professionals,
with respect to pupils with special health needs, suggests dif culties with respect
to the current system in the UK. There is evidence that contact between teachers
and health professionals is low (Larcombe, 1995; Court, 1994; Bradbury and
Smith, 1983), and that advice and information from hospital-based doctors varies
widely; although some give prompt information which helps teachers to plan
appropriate education programmes, others respond after considerable delay or

even not at all, on grounds of con dentiality (Dyson, Lin and Millward, 1998).
The aim of the study reported here was to move beyond investigating the
dif culties encountered by pupils with a chronic illness or disability and their
teachers, to identify what support is needed, as expressed by young people them-
selves, their parents and teachers. We were particularly keen to have young
people’s perspectives, since there was such limited information on this, despite
increasing emphasis on the rights of children to have decisions made about them
on the basis of their best interests and to have their views heard (United Nations
Convention on the Rights of the Child, 1989, and the Children Act 1989: see GB.
DFE/Welsh Of ce, 1994). In this paper, we report on the teacher’s role in sup-
porting this group of pupils and discuss the implications for schools. The role of
others, including health professionals, parents and friends, are reported elsewhere
(Lightfoot, Wright and Sloper, 1998, and forthcoming).
Methodology
Given the lack of previous research in this eld, particularly with children, we
started from a basis of little systematic knowledge about the key issues in service
support for young people, parents and teachers. For this reason, our research was
exploratory, aiming to investigate in depth the range of support needs in relation
to school, using a qualitative approach.
Sample
We carried out the study in three health trusts and the three local education
authorities (LEAs) covering their populations. The aim was not to undertake a
comparison study of trusts or LEAs, but rather to ensure that the sample covered
both urban and rural areas, and differences in the organization and management
of health services for children. Recruitment of project participants was through
teachers in mainstream schools. After taking advice from LEAs as to which
schools were likely to have pupils with special health needs and be receptive to
the research, a total of 121 primary and secondary schools were approached.
Thirty-four schools agreed to take part (response rate 32 per cent).
Each school nominated one teacher, who had experience and responsibility for
pupils with a chronic illness or physical disability, to participate in the research.
Most teachers nominated were Special Educational Needs Coordinators

(SENCOs) (n = 28). Others included headteachers, a deputy headteacher, a head
of year and a head of pastoral care.
Teachers involved in the study then identi ed anonymously families who had
a child with a chronic illness or physical disability which had some impact on
school life. Families were identi ed to the research team only by age, sex and con-
dition of the child. Sampling was then purposeful rather than random: the aim
was to include pupils with a range of conditions and support needs common in
mainstream schools. To protect con dentiality, the research team asked teachers
to pass on information packs and invitations to parents and young people on their
behalf.
A total of 132 families were approached and 58 took part in the study (response
rate 44 per cent), 33 ‘secondary school’ families and 25 ‘primary school’ families.
In families with secondary school children, both the parents and the young person
was asked to participate. In families with primary school children only, the
parents were asked to take part. We included pupils with and without a Statement
of Special Educational Needs (SEN). We did not include young people with
severe learning dif culties and younger children attending primary school since
we needed participants to comprehend questions about service support. A wide
range of health conditions was represented among the primary and secondary
school children involved in the study (see Appendix). All had their condition
diagnosed for at least one year.
Methods for data collection

Data were collected from young people via a semi-structured interview conducted
in their homes. Using semi-structured interviews meant young people could raise
issues they deemed important. During the interview, young people were encour-
aged to draw a diagram or ‘map’ indicating themselves at school, along with any
sources of help and support. Drawing the ‘map’ was designed to give young
people increased control over the pace of the interview and allowed them to
express themselves non-verbally. A sentence-completion task was used towards
the end of the interview, which provided the opportunity to validate some of the
earlier material and identify unmet needs. Data from parents and teachers were
collected via focus group meetings. Individual interviews were carried out with
23 parents who were unable to attend a focus group. The topic guides for inter-
views and focus groups with young people, parents and teachers covered: who
helps this group of children in relation to school and what they do; aspects of
support which are working well; the areas of dif culty; and ideas for improving
support.
All interviews and focus groups were tape recorded and transcribed. All tran-
scripts were read by at least two of the three researchers in the team: themes were
identi ed independently by each researcher and then a nal framework was
reached through discussion among all three members. A staged process known
as ‘framework analysis’ was used to analyse these qualitative data (Ritchie and
Spencer, 1994). Stages included: familiarization with the data through reading
transcripts; identifying an initial thematic framework; indexing the framework
against transcripts and systematically charting the data; followed by interpreting
the data through tracing patterns and associations, in order to identify overarch-
ing themes. The framework for analysis included both a priori issues in the topic
guides and emergent issues.
Results
Pupils’ support needs

Young people who took part in the research valued both academic and social life
in school and were making efforts to manage their health condition, so that they
could participate as fully as possible. However, there were areas where they
needed support from others, including school staff.
In terms of support from teachers, young people reported that the support
offered was variable, even by teachers in the same school. Teachers’ awareness
and understanding of the child’s condition played a major part in whether they
provided appropriate help. Young people valued highly the support they received
from teachers who were aware of their condition and its impact on their every-
day life in school. However, when teachers were not well-informed, young people
and their parents reported a wide range of problems: pupils with continence dif -
culties talked about being refused permission to go to the toilet; pupils with a
range of conditions reported teachers not believing they were ill or that they were
suffering from symptoms such as pain and tiredness; a few pupils were forced to
take part in physical education activities they felt unable to manage; and others
spoke of being expected to work at a pace they found dif cult because they were
unwell. Young people, parents and teachers all mentioned that school staff ’s
awareness of pupils’ needs and willingness to believe that a child was ill was related
to the visibility of the condition, for example, whether they used a wheelchair, or
had a physical disability. In addition, young people reported particular dif culties
with new or temporary staff who had not been informed about their condition.
The importance young people placed on having a teacher who understands was
well illustrated by the following comment:
‘The more people know, the less mistakes are made . . . ignorance is the root
of all the problems I’ve had, it’s people with a lack of knowledge that have
made it dif cult for me.’ (pupil, age 16)
Young people felt it was important for all teachers to be aware of their special
health needs but described dif culties in passing information to teachers. For
instance, some reported teachers not believing what they said, and others spoke
of the embarrassment of having to explain personal matters, such as continence
dif culties, in front of other pupils. Thus it was important to pupils that school
staff helped them with this task.
In addition to highlighting the importance of teachers’ understanding, young
people identi ed a number of speci c areas where they needed assistance from
teachers. These were: dealing with school absence; taking part in school activities;
help with peer relationships; assistance in explaining their condition to other
pupils; and having someone to talk to about health-related worries.
Dealing with school absence

Being absent also meant missing school work, which was particularly problematic
for pupils taking school examinations. While some pupils made a point of saying
they were having no dif culty keeping up with school work, a third felt they were
not getting the help they needed. Pupils and parents wanted teachers to set up
systems to ensure work was sent home, and support was given in catching up on
missed work on return to school, rather than being left to catch up with work by
copying others’ notes. If pupils have to spend long periods of time out of school,
young people and parents thought it important that teachers keep in touch with
pupils to minimize feelings of isolation from school and friends.
Taking part in school activities

Aside from keeping up with school work, most young people reported dif culties
participating in some aspect of school life, such as taking part in physical edu-
cation (PE), getting involved in extracurricular activities or going on school trips.
Participation was affected by lack of school resources, such as specialist equip-
ment, physical access facilities or the availability of a non-teaching assistant.
Young people spoke enthusiastically about teachers who were willing to adapt
lessons so that they could take part. However, they also wanted teachers to take
their views seriously on whether they were well enough to participate in activities.
When pupils were unable to take part in PE, they wanted teachers to consult them
about constructive alternative arrangements.
Help with peer relationships

Some young people had very good relationships with other pupils. Five pupils said
their condition had a positive effect on their friendships, and talked about how
friends ‘watched out for them’, helping them socially and with practical tasks,
such as pushing wheelchairs and medical emergencies. However, just over a third
spoke about being teased and bullied because of their condition. A few said they
were being ignored by peers or had dif culty ‘ tting in’ when they returned to
school after a period of absence. Many did not like being questioned by pupils
who were curious about their condition. Young people wanted teachers to be dis-
creet when referring to their health condition in front of other pupils and inter-
vene when they were being bullied. Young people and parents recommended that
teachers check whether children need any assistance in explaining their condition
to others. Those who had to spend time apart from peers – for example, if they
had to stay indoors over breaktimes, or were unable to get access to a classroom
– were pleased with teachers who made arrangements for them to be accompanied
by friends.
Assistance in explaining their condition to other pupils

Young people differed in whether they wanted their peers to know about their
condition. Reasons for wanting peers to know varied, but included: that their
peers would know what to expect; know what to do in an emergency; take care,
for instance, with physical contact or the risk of infection; and generally be more
understanding. However, other young people preferred to keep their chronic
physical condition private and were upset by instances where teachers discussed
it in front of others or left written information about their condition in view of
other pupils. Such differing views on who should know about their condition, and
how they should be told, highlights the need for pupils to be consulted individ-
ually.
Having someone to talk to about health-related worries while in school

Just over a third of the young people in our study mentioned having a teacher
they could talk to about worries, and all were highly appreciative of this support.
They spoke of seeking out a sympathetic teacher, based not on their formal role
but on their personal qualities and availability, suggesting that it may not be poss-
ible to be prescriptive about who pupils approach for emotional support.
Teachers’ support needs

While teachers involved in our study were positive about inclusive education,
commenting on the bene ts both for the child with the condition and other
pupils, they had some dif culties in supporting this group of pupils. Teachers and
parents identi ed ve main areas where school staff needed assistance: obtaining
health-related information; ensuring health-related information is passed on
between and within schools; providing emotional support; the provision of
medical care in school; and taking responsibility for coordinating support for this
group of pupils.
Obtaining health-related information

Teachers shared young people’s and parents’ concern that school staff should
understand pupils’ special health needs. However, they had problems obtaining
the health-related information they needed. Many teachers felt it was bene cial
to meet with families to get speci c information and to gain an insight into the
family’s attitude to the child’s health condition, so that the school supported the
child in a consistent way. They described ways in which they tried to improve
relationships with parents, including organizing open days for pupils with medical
needs about to transfer to the school and providing parents with the direct tele-
phone number for the school’s special needs department, so that they could
contact staff quickly.
However, teachers said they also needed professional medical advice on the
speci c implications of the child’s condition for school and did not want to have
to go through parents to access it. Reasons for teachers’ reluctance to turn to
parents included: a belief that technical information could only be provided by a
health professional; not wanting to overburden parents; and not wanting parents
to think school staff could not cope with their child. In addition, both parents
and teachers thought that not all parents were necessarily willing or able to pass
on information. In the often stressful circumstances of a consultation with a
doctor, parents said they could have dif culty recalling or even understanding
everything that had been said to them, and so might feel unable to pass on all
information. Some young people and parents argued that school staff did not
always take seriously their advice on health issues and therefore information was
needed from health professionals.
LEA and NHS staff were other sources of health-related information for
teachers. Teachers felt that it was easier to obtain information and advice from
the LEA than from the NHS, because they knew who to contact and the LEA
staff were quick to respond. However, they pointed out that LEAs were not
always able to give them advice and information about medical conditions and
the outcome was often a referral to the appropriate health services. Teachers
thought this additional layer of communication would not be necessary if school
staff had better direct links with NHS professionals. Teachers saw school
doctors as their first point of contact with the NHS and valued their input on
the statementing process. However, they felt school doctors did not have expert
knowledge on many of the chronic health conditions now prevalent in main-
stream schools. Although school doctors could relay information to teachers
from a child’s consultant, delays were common. For these reasons, direct com-
munication between school staff and the child’s lead health professionals was
considered highly desirable. However, teachers reported that this only happened
routinely when pupils had a Statement of SEN. Although there were examples
of good practice, health and education were generally seen as two separate
worlds.
Ensuring health-related information is passed on within and between

schools
Although much of teachers’ lack of understanding of pupils’ special health needs
stemmed from the schools receiving inadequate information and advice from
outside sources, it was also clear that poor communication within and between
schools contributed to teachers’ lack of knowledge. Parents and teachers sug-
gested that dif culties in communication with schools were more a feature of
secondary schools, since more people were involved than in primary schools.
Although teachers described a wide range of approaches used in their schools for
passing information about pupils’ health-related needs, there was a lack of con-
sensus about the optimum approach. Young people, parents and teachers all had
particular concerns about the need to ensure new staff and supply teachers were
aware of pupils’ special health needs.
In relation to communication between schools, secondary school teachers were
dissatis ed with arrangements for transferring information from primary to
secondary school. Unless a child had a statement, there was no system in place
for drawing attention to the child’s special health needs. Staff were dependent on
primary school teachers being proactive in drawing attention to a child’s health
needs among other information being passed on. In addition, information pro-
vided by primary schools was often insuf cient, for example, it might not include
current arrangements in school for dealing with a pupil’s needs.
Providing emotional support

Although teachers and parents felt it was extremely important for children to have
emotional support, they expressed concerns about whether school staff had the
necessary counselling skills. Teachers from large secondary schools were also
worried that they did not always have time to offer such support. Some teachers
said that weekly ‘drop-in’ clinics run by school nurses provided pupils with
emotional support. However, young people themselves generally saw the school
nurse as having a speci c role to carry out health checks on all pupils, and not
as someone to talk to about their particular health-related worries.
The provision of medical care in school

Although there is guidance on how teachers should support pupils with medical
needs in school (GB. DFEE/DoH, 1996), many of the teachers who attended our
focus group meetings in January 1998 were unaware of it. Teachers and parents
had concerns about three aspects of the provision of medical care in school,
including: teachers’ involvement in medical care; the availability of equipment;
and the appropriateness of school buildings for pupils following medical regimes.
First, in relation to teachers’ involvement in medical care, such as dealing with
asthma attacks, changing dressings and administering medication, parents com-
mented on the variability between and within schools in the extent to which
teachers were willing to take on such responsibilities. Parents who were regularly
called into school by teachers to carry out medical tasks re ected on the fact that
this was only possible because they did not work and wondered how schools coped
when parents were employed. Teachers said that their reluctance to get involved
in medical care stemmed from lack of expertise in medical matters; concerns
about being held to account should anything go wrong; lack of support and, in a
few cases, discouragement from the LEA. Primary school teachers reported par-
ticular dif culties in dealing with medical emergencies due to not having another
adult to call upon, unlike in large secondary schools where greater numbers of
non-teaching assistants gave more scope for responding to a medical emergency.
Primary school teachers said they needed more non-teaching support to deal with
medical emergencies. Teachers were keen for schools to have a clear protocol for
pupils with medical needs, including details of their medical regime and what to
do in an emergency. They also recommended that every school have a member
of staff identi ed as responsible for medical issues and given the appropriate
training.
Secondly, there was concern about the availability of medical equipment
needed by pupils with special health needs within mainstream schools. Teachers
felt this was exacerbated by a lack of clarity between the NHS and the LEA about
who was responsible for the purchase, maintenance and insurance of equipment
and the disposal of clinical waste. They wanted health and education services to
clarify such matters.
Finally, teachers commented that many school buildings were not appropriate
for pupils following medical regimes. They called for schools to have adequate
storage space for medication and equipment; and a private, hygienic room in
which pupils can have treatment and therapy without interruption, and to allow
them to have time out of class when unwell.
Taking responsibility for coordinating support for this group of children

Discussions during the focus groups revealed that when a pupil was not assessed
as having SEN, there was no clear policy within school as to who was responsible
for coordinating support. In most cases, SENCOs took this role upon themselves,
often because other staff assumed it was the SENCO’s responsibility:
‘I’m not sure whether or not I’m the responsible person. I think it’s the pas-
toral care side of school and I know some SENCOs take that on board, but
I do tend to get landed with a lot of stuff. And that’s bad in itself, that I’m
not clear as to whether I’m properly responsible or not.’ (SENCO)
Even when pupils had a Statement of SEN, the SENCOs in our study had
concerns about taking responsibility for pupils with a chronic illness or physical
disability. They pointed out that most SENCOs were also class teachers and so
had limited time for liaising with people outside school. In addition, they felt
colleagues had unrealistic expectations: often they assumed SENCOs had
medical knowledge and could deal with any health-related problem that arose.
SENCOs commented that they had not been trained to take on such responsi-
bilities. As one SENCO put it:
‘People assume you are an expert. It’s a quite unbelievable job in that sense
. . . people expect you to be aware almost like a medical person of what
[condition] is involved and how to treat it and how it’s going to affect the
child in school.’ (SENCO)
Teachers and parents in the study recommended that schools have a person who
takes responsibility for coordinating and raising awareness about any special
arrangements for this group of pupils, but that this person must be given ade-
quate non-teaching time and training.
Discussion
By including the views of young people themselves, our study provides a new
source of information about the support needs of pupils with a chronic illness or
physical disability, identifying a number of areas where teachers have a role to
play. We found individual differences in the type of support young people needed,
and comparison of young people’s and teachers’ views revealed differences in per-
ceptions about how best to support pupils. For instance, while teachers thought
school nurses were a useful source of emotional support for this group of pupils,
this was not a view shared by pupils in our study. Thus it is important that school
staff and managers consult young people, both when planning support for indi-
viduals and in more general service development.
Overall, the data suggest that support offered by teachers varies widely, and
point to a number of reasons why this might be happening. First, differences were
reported in individual teachers’ awareness and understanding of special health

needs even among teachers working within the same schools. These data are
consistent with previous research with teachers, which nds a need for access to
advice and information and a wish for improved direct liaison with health pro-
fessionals (Court, 1994; Lynch et al., 1992; Johnson et al., 1988; Eiser and Town,
1987; Charlton et al., 1986; Bradbury and Smith, 1983; Eiser, 1980). However,
in our study we found that teachers’ awareness and understanding was also of
prime importance to young people and their parents; they too wanted teachers to
have more direct contact with health professionals. Furthermore, young people,
parents and teachers all had concerns about poor communication within and
between schools, suggesting that improving communication and collaboration
between health professionals and teachers will not be suf cient: communication
between teachers also needs to be improved.
Secondly, variability in the support teachers offer seems to re ect ambiguity in
their roles and responsibilities in relation to this group of pupils. The chief
mechanism through which extra support is accessed for the child with a chronic
health condition is through the identi cation and assessment of special edu-
cational needs (GB. DFE, 1994). Once a child falls within the remit of this
system, the SENCO is responsible for coordinating support for the child. The
legal de nition of special educational needs (SEN) in the 1993 Act does include
children with a disability ‘which prevents or hinders them from making use of
educational facilities’. However, many pupils with a chronic illness or disability
may not be seen as at risk of educational dif culties and so not be de ned as the
responsibility of the SENCO. In our study, children with a wide range of con-
ditions including cystic brosis, diabetes, eczema, ME, and severe asthma were
not on the SEN register and teachers were unclear who should coordinate support
for these pupils. In addition, even when pupils had a Statement of SEN there was
some confusion as to the responsibilities SENCOs should be taking on in rela-
tion to their special health needs.
Teachers were also unclear about whether they should be involved in medical
care. There is DFEE/DoH guidance (1996) which states that although teachers’
conditions of employment do not include giving medication or supervising a
pupil taking it, staff may volunteer to do this and should be given proper train-
ing and guidance. However, our nding that some teachers felt that they lacked
this support from their LEA suggests that practice in some areas may be contrary
to the spirit of the guidance.
In order to reduce the variability in the support offered to pupils with a
chronic illness or physical disability, a number of mechanisms need to be put

in place, so that pupils routinely access the support they need, whether or not
they have a Statement of SEN. The findings of this study suggest a need for
systems for: sending work home during periods of school absence; maintaining
contact between the school and the pupil during periods of school absence;
offering constructive alternative arrangements to pupils unable to take part in
physical activities; and providing medical care in school when appropriate. In
addition, there is a need to introduce systems for passing on health-related
information between health and education staff; between parents and teachers;
and within and between schools. However, setting up and managing any such
systems will require considerable time from teachers and a designated person
to take on this role.
A recurrent theme in our data from teachers was lack of time to deal with non-
teaching responsibilities, such as medical emergencies, emotional support, and
liaison with parents and other professionals. The shortage of time available to
SENCOs to support pupils with SEN has been noted by a number of
researchers, despite their designated role in providing non-teaching support
(Bowers and Wilkinson, 1998). More broadly, recent research (Ainscow et al.,
1999) into effective practice in inclusive education has highlighted the compet-
ing demands on teachers’ time from Government initiatives in education, par-
ticularly the focus on examinations and test results in schools performance
tables, which do not acknowledge the hard work involved in supporting pupils
with special educational needs. These ndings, along with our work, point to a
need for education policy and guidance to acknowledge that supporting pupils
with special health needs requires non-teaching time. In addition, clari cation
of where responsibility for this group of pupils lies among school staff is needed
when a pupil is not deemed to have SEN. These changes are particularly import-
ant in light of the evidence indicating that the number of pupils with special
health needs is increasing. Without such action, it seems likely that pupils with
a chronic illness or physical disability needing support at school will lose out in
the struggle for teachers’ time.
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Appendix: Health conditions of children and young people of

primary and secondary school age
Primary school age
Health condition No.
Asthma (severe) 3
Asthma and eczema 1
Bowel problems 1
Cerebral palsy 1
Cystic brosis 1
Diabetes 3
Di-George syndrome 1
Down’s syndrome 2
Friedrich’s ataxia 1
Hearing loss 2
Hirsprung’s disease 1
Holtoram syndrome 1
Leigh’s syndrome 1
Muscular dystrophy 2
Nut allergy 1
Nut allergy, asthma and eczema 1
Tracheostomy 1
Visual impairment 1
Total 25
Secondary school age
Health condition No.
Asthma (severe) 1
Cerebral palsy 4
Cerebral palsy and epilepsy 1
Charcot Marie tooth disease 1
Cleft palate 1
Cranial tumour 1
Cystic brosis 1
Diabetes 2
Diabetes and food allergies 1
Eczema (severe) and asthma 1
Haemophilia 1
Hearing and sight dif culties 1

Heart condition 1
Heart and lung condition 1
Juvenile arthritis 2
ME 5
Neutropenia 1
Perthes disease 1
Renal failure 2
Russell Silver syndrome 1
Spina bi da 2
Tracheostomy 1
Total 33

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The inclusion of pupils

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The inclusion of pupils with a

Keywords: chronic illness, physical disability, mainstream school, pupils’ views,

Educational Research ISSN 0013-1881 © 2000 NFER

appropriate education programmes, others respond after considerable delay or

Most teachers nominated were Special Educational Needs Coordinators

Methods for data collection

Pupils’ support needs

Dealing with school absence

Taking part in school activities

about constructive alternative arrangements.

Help with peer relationships

Assistance in explaining their condition to other pupils

Having someone to talk to about health-related worries while in school

Teachers’ support needs

Obtaining health-related information

Ensuring health-related information is passed on within and between

Providing emotional support

The provision of medical care in school

Taking responsibility for coordinating support for this group of children

reported in individual teachers’ awareness and understanding of special health

chronic illness or physical disability, a number of mechanisms need to be put

EISER, C. (1990a). ‘Psychological effects of chronic illness’, Journal of Child Psychology

LIGHTFOOT, J., WRIGHT, S. and SLOPER, P. (1999). ‘Supporting pupils in main-

Appendix: Health conditions of children and young people of

Primary school age

Health condition No.

Secondary school age

Health condition No.

Hearing and sight dif culties 1

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