Submission for Health and Disability Commissioner Act and Code review consultation
5 Sep 2024
Rare Disorders NZ made a submission for the Health and Disability Commissioner Act and Code review consultation.
To
support better and more equitable complaint resolution for people
living with rare disorders we would like to see more promotion of the
rights of people living with rare disorders to both health and
disability services and the community. This would include a focus on
what the right to services of an appropriate standard (right 4) would
entail for someone presenting with an undiagnosed rare disorder, as well
as how right 4 and the right to be fully informed (right 6) may apply
in situations where there has been a misdiagnosis or delay in diagnosis
of a rare disorder. Similarly, a focus is needed on how rights 4 and 6
apply to the management of a rare disorder for which there is not
readily available expertise in GP, emergency and/or specialist settings.
Rare disorders NZ would welcome working with the HDC to create resources tailored to the rare disorder community.
Read the full submission here.
