For parents/patients
What is Haemophilia?
Haemophilia is a genetic condition that affects
the body's ability to control clotting of the blood. This means
people with Haemophilia may suffer internal or external bleeding.
The severity of symptoms varies from person to
person.
What does the physiotherapist do and how will it
help?
Whilst working closely with other members of the
haemophilia team, the physiotherapist has an active role in
minimising 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 twice a year, usually when you attend
clinic. 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.
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
a program of exercises if this is required and 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 physiotherapy department, or at home. These are carried
out until the joint or muscle is back to its previous
function.
Physiotherapy Contact
Lucy Buckley - 0117 342 8525
Team Contacts
For the haemophilia nurse, please call 0117 342 8721
- (If there is no answer during the day please contact 0117 342
8145)
Night time and weekend emergency contact, please call the
hospital on 0117 923 0000 and ask for the On call Registrar for
Paediatric Oncology or go to the Accident and Emergency department,
Bristol Royal Hospital for Children, telephone 0117 342 8666
If you are a GP, please bleep the on call Paediatric Oncology
Registrar.
Feeling unwell?
If you have a bleed and need to come to the centre for
treatment, please telephone beforehand to let staff know you are
coming. If you are not sure whether you have a bleed or need
treatment, please telephone the team for advice.
If you have an accident
You should go to the Accident and Emergency Department at the
Bristol Royal Infirmary. Please show them your bleeding disorder
card so that staff can be advised by the centre about
treatment.
If you are admitted to another hospital
Please show them your bleeding disorder card so that staff
can be advised by the centre about treatment.
The follow information leaflets are available to download:
More information about haemophilia and other bleeding
disorders, along with details on local support groups for your area
are available from the UK Haemophilia Society at www.haemophilia.org.uk.
