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New Zealand Organisation for Rare Disorders
PO Box 38-538,
Wellington Mail Centre
Phone: +64 4 471 2226
Email: enquiries@nzord.org.nz
Charities Commission Registration CC22512
National Health Board hits the ground running with important health initiatives
Action at last on some rare disease priorities – June 2010
After decades of frustration with bureaucratic delays in the health sector, and frequent postponement of plans to improve services for rare diseases, we seem to have at last found common sense and prompt decision making in the new National Health Board.
Though only formed for about 5 months, the NHB has already ticked off plans for national planning and funding of genetic services, and major service improvement initiatives for neurosurgery and paediatric oncology. The NHB has also authorised a much needed rejig of how funding of pre-implantation genetic diagnosis is managed, and set in place a plan to secure a number of vulnerable paediatric specialty services.
NZORD has called for many years for more central leadership and direction of services that need national co-ordination. Past reliance on District Health Boards working together to address these issues, resulted in unacceptable delays and little progress. DHB strengths are in delivering on local health initiatives, but putting aside local interests to agree on central services, especially for complex and rare conditions, was never one of their strong points.
The rapid progress from the National Health Board to provide these urgent service improvements is very pleasing to see. It demonstrates a determination to address long-standing problems and produce solutions that have been obvious in their need and their design for many years, but unachieved because of conflicted roles and lack of focus from DHBs.
NZORD welcomes the initiatives taken by the National Health Board and looks forward with interest to the next set of health service improvements on its agenda.
