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Inherited bleeding disorders

Published on 20 August 2020

This scheme pools funds for blood clotting concentrates and drugs for people with haemophilia and rare bleeding disorders resident in Scotland. People who receive products from the scheme will be registered with one of five haemophilia centres.

What are inherited haemostatic (bleeding) disorders?

Inherited haemostatic or bleeding disorders affect the blood clotting process. They can cause abnormal bleeding both inside and outside the body.

Some bleeding disorders only ever result in mild symptoms of bleeding. But, others are moderate or severe and will need regular treatment. Clotting factor concentrates or other products are used to prevent bleeding.

There are many types of inherited bleeding disorder. Haemophilia is the best known one. People with this condition often experience bleeding into joints and muscles. Those who have other disorders, such as von Willebrands, tend to bleed more typically on the surface of their body. For example, patients might get nosebleeds and cuts to the skin and gums.

Bleeding disorders care in Scotland

Specialist healthcare for people with bleeding disorders in Scotland is provided by two Haemophilia Comprehensive Care Centres (in Glasgow and Edinburgh) and three Haemophilia Centres (in Dundee, Aberdeen and Inverness).

Most people with severe bleeding disorders will be on regular prophylactic (preventive) treatment. The majority are able to self-administer treatment and can choose to have delivery of their bleeding disorder products to their homes.

Further information is available on the Scottish Inherited Bleeding Disorders Network website.

Risk sharing scheme

We have service agreements with NHS Greater Glasgow and NHS Lothian (on behalf of all East Coast Haemophilia Centres). Both health boards manage funds to buy and distribute blood clotting factors and other bleeding disorders drugs. The list of funded products is determined by NHS National Services Scotland (NSS) National Procurement contracts.

NSD contacts

Senior Programme Manager, Anke Roexe – anke.roexe@nhs.scot – 0131 3141053

Senior Programme Manager, Gordon Kirkpatrick – gordon.kirkpatrick@nhs.scot – 0131 2756456