The network was formally established on 1st April, 2011.
The definition of a Managed Clinical Network is:
“linked groups of Health Professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, unconstrained by existing professional and Health Board boundaries, to ensure equitable provision of high quality clinically effective services throughout Scotland”
The network’s aims are:
- To provide links to the Newborn Screening Programme to ensure sensitive and timely confirmation of diagnosis, and early access to clinical care package for all infants suspected of having a major haemoglobinopathy.
- To ensure prompt diagnosis and access to treatment for cases detected beyond the new born period.
- To ensure access to appropriate and prompt acute care when required for all children and adults, particularly effective acute pain management services.
- To ensure access to multidisciplinary health care professional team who are knowledgeable about these conditions.
- To facilitate provision of specialist investigations as defined in national care guidelines.
- To ensure access to a support network/charitable network who will be able to offer guidance on day to day living.
- To ensure access to services in a location that is suitable for their needs as close to home as possible.