PiA - Primary Immunodeficiency Association - Publications: Primary Immunodeficiency and school

The partnership between home and school plays a central role in every child's education. However, it acquires an additional dimension when the child has a long-term medical condition. This pack has been given to your school because the pupil named above has the following primary immunodeficiency:

The pack explains what the primary immunodeficiencies are, the effect that they can have on a child's schooling, and the special considerations that you may need to make for your pupil. The general information in this pack has been prepared by the Primary Immunodeficiency Association, in close consultation with parents and teachers who have direct experience of children with these conditions, as well as with medical professionals involved in the care of such children. We suggest that you keep the pack with the pupil's personal records, for easy access in case of need.

Many of these conditions have a genetic cause and can be passed down through the successive generations of a family.
They can be treated with antibiotics and, in many cases, with infusions which are prepared from donated blood plasma and are administered through a vein or under the skin. In many cases, infusions are carried out at home outside school hours.
They are not infectious. You can't "catch" a primary immunodeficiency from another person.
They have no connection with AIDS. AIDS is caused by the human immunodeficiency virus (HIV), which attacks a previously healthy immune system. In contrast, primary immunodeficiencies are caused by the intrinsic failure of the body's immune system to fight off infection.

This sheet gives you some guidelines to help your pupil in his/her daily life at school. The wide variety of primary immunodeficiencies means that children can be affected in different ways, so some of these guidelines may not apply in your pupil's case. The parents, backed by the medical professionals in charge of the pupil's care, should be able to give you more specific details.

In the Classroom
Children with primary immunodeficiency want to fit in and be treated as normally as possible, so it's important to enter into a positive relationship with the pupil and involve him/her as closely as possible in all the School's normal activities. Occasional unresponsiveness is more likely to be indicative of feeling unwell than of a lack of interest in the lesson. In particular, the pupil may feel under the weather for a day or two after an infusion treatment, with symptoms such as headaches or joint pain. In certain cases the pupil's general condition may result in a lower standard of performance than his/her peers and so extra input may be necessary to help the pupil to achieve his/her best. Indeed, you may find that a pupil who has to overcome major health problems in order to achieve his/her ambitions is more motivated and has a more mature attitude to life in general. It's notable that a substantial proportion of pupils with primary immunodeficiency have gone on to higher education and established themselves in rewarding careers. Homework Homework is a useful way for parents to gauge and monitor their child's progress in partnership with both the child and the teacher. A "contact book" might also be used to ensure communication and co-operation between home and school in this respect. Absence The pupil may have an above average rate of absence, whether through illness or through hospital appointments. If the pupil is absent for a prolonged period, a work plan can be developed that the pupil can follow at home or in hospital, provided that he/she feels well enough. Some education authorities can provide a home tutor at the school's request if the absence exceeds, say, 4 weeks. This may be well worth considering, in consultation with the parents.

PE
It is important that PE staff are aware of the pupil's condition. Close co-operation with parents helps considerably, and you may wish to discuss with them the possibility of allowing the pupil to tailor the programme to his/her abilities. This might mean, for example, excusing the pupil from some activities or allowing him/her to stop and rest when necessary. Swimming may be inadvisable because of the risks of ear infections, or if the pupil has a "portacath" device fitted. If the pupil is able to go swimming, the wearing of rubber socks might be desirable to help with balance on slippery surfaces or to prevent verruccas and other foot infections. Some children may be reluctant to restrain their activities and may need to be prevented from taking risks themselves. Nevertheless, a pupil who enjoys sport and excels at it should be encouraged: indeed, some young people with primary immunodeficiency have been selected for their school teams.

Educational Visits
The pupil should be able to take part in school outings and longer trips, provided that he/she is able to take all necessary medicines on the trip and, if necessary, can be accompanied by a parent or other competent helper. In the case of trips outside the locality lasting two days or more, contact should be established in advance with a local doctor who can be called on if necessary. It's a good idea to work with the pupil's parents to set up these arrangements well before the trip, and to ensure that the pupil takes any appropriate medical notes, together with a list of emergency contacts.

Relationships with Other Children
Pupils with primary immunodeficiency may feel marginalised. For example, frequent absences, physical symptoms (such as a runny nose, asthma) or special dietary needs can lead to teasing or bullying. It has also been known for others to accuse a pupil with primary immunodeficiency of being a drug addict or of having AIDS. Needless to say, these accusations are untrue and can be a source of great distress. They should be dealt with promptly, whether they are made by children or by parents. Frequent absences also mean that the child may have difficulty making and keeping friends, and so the subtle encouragement of friendships may be appropriate. In cases of prolonged absence, classmates could be encouraged to correspond with the pupil. The issue of how much to tell the pupil's peers about his/her medical condition is a delicate one, and must be handled in close consultation with the pupil and his/her parents. Although lack of information can lead to bullying, conversely, too much information might frighten peers away from the child.

Even with regular medical treatment, children with primary immunodeficiency are prone to infections. A constant awareness of infection is therefore essential. This sheet outlines the general things of which the School may need to be aware. The parents of your pupil will be able to provide you with information specific to him/her.

First Aid
Children have a natural energy, and unless a child is literally wrapped in cotton wool, some bumps and scrapes in the playground are inevitable. However, if the pupil does suffer a mishap during lessons or recreation, prompt treatment is essential. For example, cuts, grazes etc. must be treated with care in order to prevent infection from setting in. Some parents prefer their children to carry "Medicalert" pendants or bracelets. These are not jewellery, but sources of vital instructions for dealing with an emergency.

If the Pupil Seems Unwell
Sympathetic support is essential. It's important to try to draw the line between giving too much attention to the pupil's problems and brushing his/her concerns aside. Most children don't like to make a fuss, so if the pupil tells you that he/she is feeling unwell or you suspect something may be afoot, check immediately for the following things:

Medication
Many children with primary immunodeficiency are prescribed large doses of antibiotics for longer periods than normal. It would be extremely helpful if provision could be made for the pupil to take his/her medication at school. Some children need to use portable nebulisers or inhalers and should be allowed to keep these to hand at all times if the pupil's parents or doctor advise it.

Outbreaks of Communicable Diseases
Children with impaired immunity are highly susceptible to infection. Therefore, please inform the pupil's parents immediately of any outbreaks of communicable diseases at the school, including:

Immunisations
Live vaccines can harm some people who have impaired immune systems. In any case, children who are antibody deficient cannot make the necessary responses to immunisation. Therefore, children with primary immunodeficiency, particularly those with antibody deficiency, must not be immunised without prior consultation with parents.

The pupil's medical condition may be liable to change with time, or if there are changes in medications or treatment. It's therefore important that the parents maintain regular contact with you and inform you of any major changes. In turn, it would help if you could get in touch with the parents if you (or another member of staff) observe any alterations in the pupil's conduct, morale or appearance that might be attributable to his/her condition. Medical information published by the PiA is approved by our Medical Advisory Panel. However, it is intended for general guidance only, and should not be used in place of advice from a specialist physician responsible for the pupil's medical care.

The following organisations can provide further general information about primary immunodeficiencies and the support and education of children with long-term medical conditions:

Primary Immunodeficiency Association (PiA) Alliance House,
12 Caxton Street, London SW1H 0QS.
Telephone: 0171-976 7640.
Email: info@pia.org.uk
The only charity supporting all people with primary immunodeficiencies in the UK and representing their interests to the Government and the medical profession. Publishes a wide range of literature on the primary immunodeficiencies. Also funds research into the treatment and potential cure of these conditions.
Action for Sick Children
29-31 Euston Road, London NW1 2SD.
Telephone 0171-833 2041.
A charity that campaigns for the benefit of all sick children and offers parents advice or help with the care of their children in hospital.
Association for Children with Life-threatening or Terminal Conditions and their Families (ACT)
65 St Michael's Hill, Bristol BS2 8DZ.
Telephone 0117 922 1556.
A charity concerned with the needs of children and young people who have conditions that are likely to limit their life-span.
Contact a Family
170 Tottenham Court Road, London W1P 0HA.
Telephone 0171-383 3555.
A charity that provides support for families who care for children with special needs.
Genetic Interest Group (GIG)
Farringdon Point, 29-35 Farringdon Road, London EC1M 3JB.
Telephone 0171-430 0090 Fax 0171-430 0092
Email 101366.760@compuserve.com
A charity that works to benefit all people affected by genetic disorders. Has produced a cross-curricular resource pack for teaching genetics in secondary schools.
In Touch Trust
10 Norman Road, Sale, Cheshire M33 3DF.
Telephone 0161-905 2440
A charity that provides support for families who care for children and adults with special needs and rare disorders.
National Association for the Education of Sick Children
18 Victoria Park Square, Bethnal Green, London E2 9PF.
Telephone 0181-980 8523.
A charity that works for equal access and entitlement to a good education for all sick children.

This pupil has the following medical condition:
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Basic symptoms:
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Medicines, tablets etc. taken:
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Name: _____________________________
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Special first-aid treatment:
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In emergency, please contact:
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For more detailed information, please see:
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