Prognosis & Duration

• Haemophilia
• Von Willebrand’s disease
• Development of Inhibitors
• Other clotting factor deficiencies
• Female haemophilia carriers

Haemophilia

People born before 1970 are likely to have disabling problems related to joint damage and multiple joints are likely to be affected.

People born before 1991 may have contracted one of the blood borne diseases associated with clotting factor replacement.

Younger people may have no or minimal joint damage because they have received prophylactic (preventative) clotting factor treatment from a young age thereby reducing bleeds and long-term damage. Prophylactic therapy was not used throughout the UK until the mid to late 1990s. Anyone born before then may have disabling problems related to joint damage. People with haemophilia born since then are unlikely to have significant joint damage unless they have an inhibitor.

Mild Functional restriction

Care and mobility needs related to neurological damage are indefinite and so indefinite awards are recommended.

As joint damage is less widespread in this group, joint replacement can significantly improve mobility. Awards should be reviewed after hip or knee replacement surgery. Joint replacement in the upper limbs will not significantly improve function and awards made related to upper limb arthritis and deformity should be indefinite.

Moderate Functional restriction

Care and mobility needs related to neurological and joint damage are indefinite and so indefinite awards are recommended.

Severe Functional restriction

Care and mobility needs related to neurological and joint damage are indefinite and so indefinite awards are recommended.

Von Willebrand’s disease

The majority of people will have mild disease. In some cases, drug treatment to reduce bleeding will be necessary. No care or mobility needs are anticipated in this group.

In more severe cases, where treatment with clotting factors is required to control either spontaneous bleeding or bleeding after trauma or surgery, there may be joint damage or neurological damage as in haemophilia. Assessment of care and mobility needs in these cases should be carried out as for haemophilia.

Supervision by others does not prevent bleeds or prevent adults with normal cognitive function from sustaining injuries. Adults are able to recognise the onset of bleeding and seek help or self-treat.

Where needs arise because of neurological impairment or joint damage related to episodes of bleeding follow the guidance for haemophilia. Care needs are likely to be indefinite for neurological and multiple joint damage.

Development of Inhibitors

Indefinite awards are recommended whether treatment for inhibitor is effective or not. This is because damage caused by uncontrolled bleeding is a permanent effect even though the cause of it (inhibitor) may have been effectively treated. Care and mobility needs related to neurological damage are indefinite and joint replacement does not improve mobility or range of movement.

Other clotting factor deficiencies

These are rare conditions and the effects will be variable. When assessing mobility, evidence of neurological impairment and joint damage related to bleeding should be assessed as for haemophilia.

Indefinite awards are recommended.

Female haemophilia carriers

No care or mobility needs are anticipated.

All information must be taken into account when considering the duration of disabling effects and the duration of disabling effects must be based on the particular circumstances of the individual claimant.

Amended November 2009