Every family album has a first-day-at-big-school picture in it. Tom, aged 4, in school uniform big enough for him to grow into. Beautifully pressed short trousers. Smart school tie. Socks. Clean shoes. It doesn't last long.

First days away from home are always a wrench. Hopefully, by the time of the start of his formal education the boy with haemophilia will have had plenty of opportunity to play and mix with other children. Nursery or playschool should have defused his mother's initial fears of letting other people look after her child - and her child's bleeding disorder. This earlier informal education makes the start of primary schooling easier. Parents will have confidence that their son is able to cope for short periods of time without them. They will know that he can be trusted to the care of others. The boy is used to the discipline of structured play with other children, and will have survived more than one scrap.

Before that first day his parents should have made sure that the teachers are both aware of his haemophilia, and are comfortable with the diagnosis. This can only happen if they have up-to date information from the family and from the haemophilia centre. All teachers are used to coping with a wide range of disorders at school. For instance, asthma, diabetes and epilepsy are all more common than haemophilia. It really takes an awful lot to faze the average teacher! But they do need that up-to-date briefing, and they need to know what to do if Tom presents them with a problem.

The best way I have found to do this is to give a personal letter about the child to his parents. They then take the letter when they go to see the teachers. The message is clear. They, the parents, are in control of all decisions taken about their son.

A typical letter is shown in the box. It sets the scene for progress by emphasising normality, and stressing the things the boy is able to do with his friends. It starts with some personal details about him. The diagnosis is then given and the fact that usual first aid measures apply is stressed. This is important because all teachers have knowledge of first aid and will be reassured; they don't have to learn anything new.

Some people still think that boys with haemophilia are likely to collapse in pools of blood and spoil the carpet, and the knowledge that most bleeds are internal is important. Because of this the teachers will need to know how to spot bleeds. The knowledge that the boy himself can tell when he is bleeding before there is anything to see will also be reassuring to them. Silly though it seems, some people also think that haemophilia can be caught. Teachers need to be told that it is not contagious and cannot affect other children, if only to reassure their parents. A very important part of the letter is to explain who to contact should any problems arise, and how to do this. I append a card with the names of staff and telephone numbers to the introductory letter. In this way contact can be made directly with the centre if a parent is not available either at home or on a telephone pager. In the UK families with haemophilic children under the age of 16 years can benefit from a valuable free service called "Armourpage", which is sponsored by the Armour Pharmaceutical Company in association with B.T. and the Haemophilia Society.

The next section of the letter deals with activities and sports and again stresses normality. Normal development depends on continuing exploration of the world. Only the individual can eventually decide what is right for him in terms of work and leisure. Unnecessary restrictions hinder this progress. Children wanting to do the same things as their friends will eventually either reject restrictions directly, or hide the fact they are disobeying their parents in order to avoid retribution. Far better to let them learn within sensible limits what is right for them and for their haemophilia. The only restrictions I recommend are that boys should not box or play rugby football, and the letter explains why. Finally, I ask to be kept up to date with the boy's progress. This is because I want to make sure that decisions which could affect his future and which are unduly influenced by the diagnosis are not taken at school.

In addition to the letter and the card, Haemophilia Society literature about schooling is helpful, as are some of the leaflets now available from the pharmaceutical companies. Occasionally either the parents or the teachers ask for all this information to be followed up by a visit to the school by a member of the centre staff. This can be extremely helpful if there are special difficulties, for instance the presence of high titre inhibitors.

Nowadays the great majority of boys with haemophilia can attend normal school and compete as equals with their peers. It is not very long ago that this was not the case, and in some countries it is still more usual for special schooling to be recommended for haemophilia. If this happens it is very important for the family to discuss the recommendation with centre staff and with representatives of the Education Authority before making a final decision.

The boy with haemophilia deserves the best education that is available. His future happiness and prosperity depend on schooling which has allowed him to thrive outside the diagnosis of haemophilia, which is only one of the many facets that influence decisions about an eventual career. The choice of that career is crucial to him. Although modern treatment allows him to do most jobs, whether they depend on strength of mind or strength of body, he will be competing with others without haemophilia. He has to prove to himself and to others than he is the best candidate for the job, with or without the bleeding disorder.

I thought I should drop you a note about Tom. He is a fine boy who is developing normally. He has a younger sister, Anne, and the family live in Newtown, where his father is a plumber. You will know from his parents that Tom has severe haemophilia. This is caused by the deficiency of one of the blood clotting ingredients. Because of this deficiency blood does not clot as quickly as it should following injury. Children with haemophilia bleed no faster than other children; their bleeds simply last longer. This distinction is an important one. It means that there is always plenty of time to seek help if it is needed, and it means that the first aid measures used with any child who is injured still apply. Most bleeds in haemophilia are internal. If they show at all it is usually as bruises, most of which are superficial and of no consequence. Bleeds into muscles and joints do need treatment. Tom knows when he is bleeding and will tell his teacher. Treatment of haemophilia itself is easy. The missing ingredient is replaced in the form of a blood product given into a vein. Tom's parents have been taught to do this themselves. If they are not available when Tom needs them, all you have to do is to ring the Centre; the names and telephone numbers of staff are appended. A member of staff is always available during school hours. Tom is a healthy and active little boy. His parents have been very sensible, and have not tried to restrict his activities. We advise that he should be allowed to participate in everything his friends do at school. As he grows, he should be encouraged to develop skills in sport (especially swimming and team sports) and physical education, as well as crafts like woodwork and metalwork. If trips away from school are planned, the address of the nearest haemophilia centre and the name of the doctor concerned are available. For long trips or visits to other countries, we will supply a holiday kit, together with a letter for the Customs, details of treatment facilities, and, when required, help with travel insurance. The only restrictions affecting Tom are that he should not box or play rugby football. This is because of the special risks to the head and neck involved in these sports. Head injury in haemophilia can be serious, and immediate referral to the centre is necessary.

Message of the day... plan ahead for his future.

Published in 1994