Parents &
Carers
Specialist healthcare professionals
Haemophilia is a lifelong condition that requires lifelong care and supervision by a team of specialist healthcare professionals. Everyone with moderate or severe haemophilia should be registered with a CCC for regular review by a dedicated, multi-disciplinary team of professionals skilled in a range of specialities.
These are the people who can give advice on all areas of haemophilia and answer any day-to-day questions that may come up. This team consists of a specialist doctor, nurse, physiotherapist and counsellor. The core team can also be helped by other specialists at the centre.
Specialist doctors
A doctor specialising in blood disorders is known as a haematologist. In any specialist care team for haemophilia, the haematologist has overall responsibility and makes the decisions about tests and other specialists you might see.
For children with haemophilia, the doctor may be a paediatric haematologist who is both a specialist blood doctor and an expert in the care of children.
Specialist nurses
The haemophilia nurse is the team member you will generally have the most dealings with on a day-to-day basis. The nurse will organise tests and arrange meetings with other members of the team. It is also the nurse who will most likely give the first few injections of factor and train you and/or a carer to administer subsequent injections. As well as providing care at the CCCs, haemophilia nurses also make home visits and provide care in Haemophilia Centres.
Nurses are often the first port of call for advice about haemophilia. If necessary, the nurse can also make visits to schools or nurseries (to educate staff etc.). The haemophilia nurse is vital to the team and should be approached with any worries or queries, no matter how trivial they might seem, they won’t be surprised or shocked by anything that you might say.
Physiotherapists
The physiotherapist has two main jobs in the team. They give advice about exercises that can strengthen muscles and keep them flexible in order to help protect them from injury.
This is particularly important in growing children who want to run around and play sport with their friends. The physiotherapist can also treat bleeds by using ultrasound.
Social workers
Where available, the social worker in the team is there to give advice on how to cope with some of the potential stresses of living with haemophilia. Generally, the social worker provides advice to the families or carers of people with haemophilia.
In addition to the specialist nurse, the social worker can provide another port of call for everyday problems or any crises that might arise. They can also give advice on benefits and grants that are available.
Other specialists
Other specialists that may be seen include dentists who specialise in bleeding disorders, and if the Haemophilia Centre does not have one they can recommend a dentist who knows about haemophilia.
