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Cystic Fibrosis
The following information is extracted from an information sheet 'Cystic Fibrosis, Teachers and School' produced by the Cystic Fibrosis Trust.
What is Cystic Fibrosis?
Cystic Fibrosis (CF) is one of the most common life-threatening inherited disorders among Caucasian people in the UK.
It affects the lungs and digestive system; the body produces a thick, sticky mucus resulting in a build-up of enzymes, causing inflammation. Effective treatment includes daily physiotherapy, high calorie diet, and antibiotics.
A child with CF will not normally have learning difficulties. Their special needs relate mainly to ensuring their treatment is carried out with minimum disruption to their day-to-day lives.
Special Educational Needs
Governing bodies of all
maintained schools must have regard to the Code of Practice on the Identification and
Assessment of Special Educational Needs when carrying out their duties towards
all pupils with special educational needs.
A child with CF may have special educational needs if, for example, CF prevents or hinders the child from making use of educational facilities of a kind provided for children of the same age in schools within the area of the local education authority.
The school should involve parents as active partners and their views should be sought at all stages. Parents have a right to take part in decisions about their child's education and to be kept in touch at all stages.
Social and Psychological Aspects of CF
A
persistent cough, possibly being underweight and small for their age or the
embarrassment of taking pills and powders with meals may result in teasing from
other children. Talking this over with their classmates explaining to them the
reasons for their coughing, physio, medicines, pills and powders will hopefully
reduce any social ostracism and encourage friends to take a positive attitude.
Children with CF often find supportive friends who are not only understanding
but get actively involved in helping with their physio and fitting in with the
special timetable. A spontaneous invitation to a party after school is
difficult to accept as extra enzymes may be needed or physio sessions may be
missed. Most social activities have to be planned to ensure that treatment is
not missed.
Making Provision
There are no national guidelines
for schools or teachers on giving medication to children at school. Teachers
have a general legal duty to act in loco parentis but are not contractually
obliged to administer medicines or supervise children taking them. Parents
depend on the goodwill of teachers in allowing them - or other helpers who have
had the little training needs to do the physio - to come into the school at
times when extra physio or nebulised treatment is required. When this happens
they will need to use a small private room, such as the medical room. Teachers
may be asked to supervise the child at lunchtimes to ensure they eat well and
take their medication. Teachers anxious about supervising children taking drugs
at school should contact the child's GP or the teaching union for more specific
guidelines. Some schools have their own policy an d some LEAs have produced
their own guidelines and may offer indemnity to staff. The Department for
Education says: 'LEA and self-governing schools have a responsibility to make
provision for the health and safety of children including the administration of
medicines when necessary'.
Examinations
Children with CF are as academically
able as their contemporaries. There may be significant periods of absence owing
to chest infections or hospitalisation and the child will need a little extra
help to catch up with the rest of the class. It may be appropriate to set work
for the child to do in hospital if the child is well enough. The parents should
be consulted to see if this is appropriate.
The Special Needs Co-ordinator, or someone responsible for special needs in school, will have the knowledge and expertise to advise other teachers of the rules and regulations relating to examinations. The special needs of the child must be negotiated at the beginning of the school year by the Special Needs Co-ordinator, or nominated person, with the Examining Group.
The Cystic Fibrosis Trust . Web site: www.cftrust.org.uk