While we are all different, the fact that our lives are touched by a bleeding disorder means we have a lot in common. We all want to see the best possible treatment and care available to everyone in Scotland with a bleeding disorder and high quality support in place for their families.
By working together in Scotland we believe we can give you a strong voice with decision makers. That means we engage with a wide variety of organisations on your behalf to make sure the patient point of view is always part of the discussion. A strong and constructive relationship between patients, parents, healthcare professionals and policy makers can be a powerful driver of improvements. These are just some of the ways we are representing you.
The Scottish Government
We are grateful for the support we receive from the Scottish Government and in particular from successive Cabinet Secretaries for Health and Sport. As well as vital funds, the Scottish Government are open to ideas about the how to keep improving the quality of care for people with bleeding disorders in Scotland and that ongoing dialogue.
The Scottish Parliament
We are actively involved in the Cross Party Group for Rare Diseases and spoke at this year’s Rare Diseases Day reception at the Scottish Parliament. We also recently responded to the Scottish Parliament Health and Sport Committee’s call for evidence for their short Inquiry into the impact of early intervention on health inequalities.
National Services Division (NSD)
NSD manage the risk share agreement between Health Boards which mean that everyone in Scotland has access to specialist Haemophilia Services regardless of where they live. NSD manage the Scottish Inherited Bleeding Disorders Network. This is a national bleeding disorders committee for Scotland and brings everyone involved in treatment and care in Scotland together to work on continuous improvement of treatment and care. There are patient representatives involved in all aspects of the work of the Network.
As a Scottish charity our focus in naturally on Scottish institutions. However, we often work with Scottish MPs on issue that affect the whole of the UK. As part of this work we encourage MPs to join the All Party Parliamentary Group on Haemophilia and Contaminated Blood.
To make the most of these opportunities we need more patients and parents who would like to be representatives. If you are interested in getting involved in any aspect of our advocacy work then please get in touch. You are a expert by experience and your ideas can make a huge difference.