The department of health has been consulting on the draft national framework for children and young people’s continuing care. The framework will be used by clinical commissioning groups and other professionals in addressing health needs of children and young people, not currently met by existing or specialised services. You can read the draft here (consultation now complete)
Whilst there are positive aspects to the document, such as the inclusion of a single point of contact for continuing care, we feel that the needs of children with undiagnosed genetic conditions need to be addressed more thoroughly, so that they do not face barriers to receiving the care and support they need. We feel that it is really important that neither assessments nor access to continuing care services should rely on having a diagnostic label, and this needs to be reinforced in the framework.