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 the Cabinet Secretary, Alex Neil MSP. 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.
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 is currently facilitating regular meetings of Healthcare Professionals from across Scotland to develop and review Scottish protocols. The group is also looking at how the outcomes of the service can be meaningfully measured. Within the group we are working towards a National Managed Clinical Network for Bleeding Disorders to continue this work.
The Penrose Inquiry
We are a Core Participant in the Penrose Inquiry and are talking to members from across Scotland about what they are hoping the Scottish Government’s response to the Penrose Report will contain. We also take part in the Reference Group for the Scottish Government Scoping Exercise being conducted by our friends at the Scottish Infected Blood Forum.
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.
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