Teachers zone
EVERYTHING TEACHERS NEED TO KNOW ABOUT HAEMOPHILIA Looking after a pupil with haemophilia in the classroom shouldn't be a big worry
Haemophilia is a rare blood clotting disorder caused by a deficiency of a clotting factor in the blood. It usually occurs only in males (with very rare exceptions) and causes them to bleed for longer than normal after an injury.
About 6,000 people are affected with haemophilia in the UK. There are two types of haemophilia, the most common being haemophilia A, in which factor VIII is lacking. In haemophilia B, factor IX is lacking.
Haemophilia is said to be mild, moderate or severe. The severity is linked to the amount of clotting factor in the blood. People with mild haemophilia have a slight factor deficiency and have minimal trouble. Severe haemophilia is the result of a significant factor deficiency (less than 5% of normal). People with severe haemophilia are more prone to bleeds.
Many people think that a person with haemophilia will bleed to death from a minor cut. This is NOT true. Bleeding will stop: it just takes a little longer.
Cuts and grazes rarely cause problems and a little pressure and a plaster are usually enough to stop bleeding. The main problem for boys with haemophilia is internal bleeding into joints and muscles. Bleeds can occur spontaneously or as the result of trauma (surgery or injury) in joints, muscles and soft tissues. If left untreated these bleeds cause acute pain and severe joint damage leading to disability.
In the past, bleeding episodes caused difficulties with education and employment. However, these days preventative treatment (known as prophylaxis) allows people with haemophilia to lead virtually normal lives.
Nevertheless, there may be times when a pupil with haemophilia will experience difficulties with their condition. It is important to remember that each individual's experience is unique and someone with moderate haemophilia could have just as much difficulty with the condition as someone who has severe haemophilia. For a better insight into the effect that haemophilia has on a pupil, talk to his parents, haemophilia nurse or previous teachers.
Treatment for haemophilia consists of injections containing the missing clotting factor, given directly into the vein. Generally, young people with haemophilia receive regular preventative treatment 2 or 3 times a week to minimise the likelihood of long-term joint damage.
Younger children may also have a PORT-A-CATH® fitted to improve access to their veins. A PORT-A-CATH® is a type of catheter. Catheters are small tubes that are placed inside a vein and connected to a port. The catheter and port provide permanent access to veins, through which drugs can be injected or blood samples taken without the need for repeated injections. You will not be expected to use this device.
People with haemophilia have a personalised treatment plan, which is determined by a haemophilia specialist. Treatment is usually given at home before school by a parent or the pupil himself. Up until the age of nine, boys usually need the help of a parent during infusions; from nine onwards they will gradually learn how to infuse themselves.
People with haemophilia are advised to treat themselves on the mornings of days when they are likely to be most physically active, for example, on the days they do sport. This is because the treatment offers the best cover for the first eight hours following administration. It is important that you liaise with your pupil's parents so that they know which days their son participates in sport.
Your pupil may also need to keep factor and needles at school in case he develops a spontaneous bleed, which needs to be treated quickly. If he develops a bleed he may require time out of the classroom to administer treatment or one of his parents may need to come to the school to help him with his infusion.
Today's treatment is highly effective and significantly reduces the number of bleeds a young person may experience. You will never be expected to give your pupil an injection.
It is natural for teachers to be concerned about the safety of a pupil with haemophilia in their class. However, it is important to understand that a child with haemophilia is as physically able to participate in classroom activities as his classmates. There is nothing special you need to do and his condition is unlikely to impact on your classroom practices. As long as you understand the basics of haemophilia and know what to do in an emergency, having a child with haemophilia in your classroom needn't be a worry.
Your pupil may, or may not, wish for his classmates to know about his condition. Ensure you check with your pupil and his parents what their wishes are before discussing haemophilia in the classroom. They may want you to talk about certain issues and avoid others.
Bruising is a common symptom of haemophilia, especially in people with severe haemophilia. In the past, parents of children with severe haemophilia have wrongly been accused of child abuse because of the bruises their children develop. If a child with haemophilia in your class develops bruises, do not be unduly alarmed unless you have reason to believe that they could be at risk of child abuse at home.
Your pupil may also feel very self-conscious or embarrassed about any bruising they experience, and it may be something that other pupils notice, so it is important to address this issue sensitively. This is especially important during PE lessons when your pupil may wish to change in private or wear clothes that cover up any bruising.
If you have a child with haemophilia at school it is important that all members of staff have a basic understanding of haemophilia and know which pupil has the condition so that they know what to do if there is an accident in the classroom or playground.
As the teacher of a child with haemophilia it is good practice to keep permission forms, contact phone numbers of the child's parents and haemophilia centre, and notes regarding his parents' wishes together so that you have access to them in case of emergency. Although it is unlikely there will ever be an emergency, it is important to be prepared just in case.
Children with haemophilia are able to take part in most school sports. In fact, they should be readily encouraged to take part in as much sport as possible because it strengthens joints and muscles, and improves coordination and stability, which can help to reduce the risk of bleeds. For more information on the benefits of exercise, visit the medical centre section on this website.
Children with haemophilia are particularly encouraged to take part in swimming, gymnastics, badminton and cycling. For most other school sports – including football at a non-competitive level – the benefits outweigh the risks and should also be encouraged. It is recommended that the child completes a full warm-up session prior to commencing any sport and that he has an infusion of factor on the day of his training session. Contact sports such as rugby and martial arts should be discouraged, as should any sports that involve excessive contact at a competitive level.
There is a risk associated with every sport. The level of risk is dependent on the severity of a child's haemophilia. The risk rating below is for guidance only but may help you risk assess the sports on offer at your school. A child should discuss the risks with their haemophilia nurse or physiotherapist prior to taking part in sport.
Sports that are not recommended
- Boxing
- Hockey
- Ice hockey
- Lacrosse
- Martial Arts (contact)
- Rugby
Children with haemophilia shouldn't be treated differently to their classmates during P.E. lessons. Other than taking the usual precautions, such as ensuring that pupils warm up properly and that they have adequate clothing and safety equipment (i.e. shin pads, gum shields, gym mats etc.), there is no need to make any additional adaptations for a child with haemophilia.
If you have a pupil in your class with haemophilia, the child's parents will advise you what to do if he has a bleed at school. The child will be able to tell when he is having a bleed even before any symptoms occur.
The medical centre section of this website contains additional information on the symptoms of both joint and muscle bleeds.
General first aid procedures for a bleed are:
- Protect the limb
- Rest the limb
- Add an ice pack to reduce the swelling
- Add a compression bandage to the limb
- Elevate the limb
- Ensure the child receives factor replacement therapy
If the child is old enough to self-administer treatment, he will need time out of the classroom to treat himself. Alternatively, you may need to contact his parents or guardian so that they can come to the school to administer treatment.
Paracetamol is commonly used for pain management. Your pupil's parents will advise you whether the child can have paracetamol to alleviate pain.
Never give aspirin to a person with haemophilia
The storage of factor replacement therapy depends on which brand your pupil has been prescribed. Some factor needs to be stored in a fridge whilst other brands can be stored at room temperature. Your pupil or his parents will be able to inform you of any specific storage requirements for the medication.
Factor is administered via intravenous infusion so the vials of factor and the needles used for the infusion should be kept well away from other children, preferably in the school's medical room or staff room. Ensure that your pupil with haemophilia and other staff members know where his factor is stored in case he needs to self-administer factor during school hours. The expiry date on the factor should also be checked regularly.
Out of date factor should never be used
The needle used in the infusion should always be disposed of in a yellow sharps box. If your school doesn't have a sharps box, speak to your pupil's parents or haemophilia centre about how to purchase one. If the factor exceeds its expiry date, let your pupil or his parents know so that they can return it to the haemophilia centre.
Needles and medication should never be disposed of in domestic waste
Your pupil with haemophilia will have minor cuts and scrapes just as any other child his age. Shallow cuts are not life threatening. The cuts may take longer to stop bleeding but they will stop bleeding eventually. Administer standard first aid in this instance.
Emergencies include head injuries such as falling from play apparatus, bleeding into the nose or throat cavity (minor nose bleeds are not generally a problem) and any sudden, severe pain such as a headache or abdominal pain. Blood into these regions can be life threatening and should be checked immediately.
Emergencies are extremely rare. However, you should know what to do, just in case. If you are unsure whether or not a situation should be treated as an emergency, seek advice from the child's haemophilia centre. They will be able to advise you whether or not the child should go to hospital.
After a bleed, a child will be unable to take part in sport for a while. The length of time depends on the severity of the bleed. The child's parents will be able to advise you when the child is able to take part in sport again.
