Advocacy

Everyone who spoke at the Rare Diseases Day reception at the Scottish Parliament in 2014 (Claire Tennant Photography)

Everyone who spoke at the Rare Diseases Day reception at the Scottish Parliament in 2014 (Claire Tennant Photography)

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 Cross Party Group on Rare Diseases marking the 'No Party' birthday of the CF Trust.

The Cross Party Group on Rare Diseases marking the ‘No Party’ birthday of the CF Trust.

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.

In this section

The Penrose Inquiry
All Party Parliamentary Group on Haemophilia and Contaminated Blood

One comment

  • Hi this is Michael Smalley current advocate for the Forgotten Victims of Tainted Blood U.S.A. I am writing you today on behalf of a group of widowed families who would like the world to know Just how badly our Government and the NHF have treated the American Victims of this tragedy and their widowed families. Our members have been systematically harassed, restrained, discredited, and their literary works banned from public publication in America if they do not fall in line with the rosy, everyone’s happy version of events. My job put simply, is to keep talking about these events until the whole world hears. These victims will not be silenced and simply forgotten. We would like to thank you for keeping this subject in the worlds ear. Our best chance for justice here in America is if every nation knows how totally these slime-balls have crushed America’s victims and their widowed and orphaned families. Thank you for your help in bringing their immoral and unethical practices to light. Brought to you in loving memory of our Forgotten Victims of Tainted Blood World wide.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s