Great Ormond Street Hospital (GOSH) is a national centre providing specialist treatment in the management of haemophilia and other rare bleeding disorders.
What is haemophilia?
Haemophilia is a bleeding disorder caused by a genetic defect. It is an X-linked recessive disorder which means that boys have the condition and girls are carriers. It is caused by a deficiency of either factor VIII (Haemophilia A) or IX (Haemophilia B). These are proteins in the blood which are needed for clotting. Treatment consists of regular injections of the deficient factor to reduce the frequency of bleeds. The majority of bleeding episodes occur in joints and muscles, which benefit from physiotherapy to improve recovery.
Haemophilia physiotherapy services at GOSH
The haemophilia physiotherapy team work closely with other specialist services within GOSH such as, Rheumatology, Orthotics, Orthopaedics and the Botulinum toxin service. The team has access to the latest research, specialised equipment, a large hydrotherapy pool and a physiotherapy gym.
The physiotherapists work very closely with the multidisciplinary team, giving a holistic approach to care. The physiotherapy assessment can help make a diagnosis or help plan further treatment or investigations. Often, the physiotherapists will provide an individualised treatment programme following the assessment.
The physiotherapists have an excellent relationship with other hospitals and physiotherapy teams throughout the UK, and often make referrals to local hospitals and community centres so that treatment can be continued nearer to the child’s home. They are also skilled in giving advice and support to other physiotherapy teams.
What does the physiotherapist do and how will it help?
The physiotherapist has an active role in minimalising or preventing secondary complications of the musculoskeletal system. This system involves your joints, muscles, ligaments and nerves and allows you to move, walk and be active. Bleeding into joints and muscles can cause pain, loss of range of movement, muscle weakness and loss of functional skills.
The majority of children are seen as outpatients. A comprehensive musculoskeletal assessment is carried out to monitor joint health and function. The physiotherapist will look at joint range, muscle strength, co-ordination, balance, walking, running and hopping. These assessments ensure any problems with joints or muscles are identified early to minimise further bleeding episodes. Occasionally a bleed can occur in the brain, which can cause problems with control of muscles.
The physiotherapist will ensure the appropriate support and treatment is in place, which may involve a referral to a child’s local team. Patients and families also receive ongoing advice, promotion of exercise and appropriate activity, along with education on the recognition and management of an acute bleed.
What sort of things might physiotherapy involve?
To help manage an acute joint or muscle bleed, a physiotherapist may advise PRICE (protection, rest, ice, compression, elevation), use splints, crutches, stretches or strengthening exercises. Some of these activities may be carried out in the gym, haemophilia centre, hydrotherapy pool or at home. The physiotherapist aims to return any joint or muscle to its previous function and will approach this in an age-appropriate and child-friendly manner.