The impetus for this smaller workshop of invited participants came from several different sources, and the convergence of these events suggested an opportune time for action to improve clinical services for rare disorders:
- Work by the Paediatric Society over many years aimed at improving services for children and young people, winning greater support within the Ministry of Health for implementation plans.
- Work by NZORD in partnership with various rare diseases groups to advocate for systemic solutions to problems identified in service delivery for rare disorders. This included support from the Health & Disability Commissioner for action to address issues raised by the cases we took to his office.
- Recent discussions at a political and policy level about clinical networks as a key to improve service delivery and efficiency in our health system.
The discussions are outlined in the workshop programme.
The workshop opened with the presentation of an open letter from Health and Disability Commissioner, Ron Paterson, offering his support to the discussions and identifying a number of important issues relating to rights and duties in health service provision, that are relevant to the topic of our workshop.
Presentations at the workshop identified a number of problems with current service delivery as well as solutions that are proposed or actually being implemented in various ways.
Central to these were the structural issues associated with District Health Boards and the difficulties they have in adapting their services to meet the needs of rare disorders across age ranges, across geographical boundaries, and across medical disciplines (paediatrics usually excepted here) when input and co-ordination from more than one discipline is required. Problems were also noted in the reluctance of DHBs to give appropriate attention to the needs of rare disorders, with “other priorities” often cited as the reason for this. We noted a particular example of this dilemma in the administration of funding of pre-implantation genetic diagnosis to avoid serious inherited diseases in pregnancies for at-risk couples, leading to serious inequities in access to PGD in different regions. However we noted the opinion of the Health and Disability Commissioner that there were counterbalancing responsibilities for DHBs to make reasonable provision for the needs of those with rare disorders. Clearly, neglect by lack of prioritisation was not an acceptable outcome.
An analysis of these problems suggests that service design and operations can be driven and prioritised by organisation-centred, clinician-centred, or patient-centred approaches. The examples we discussed showed clearly that we were often provided with DHB-centred or clinician-centred services, while the most pressing need and priority should always be patient-centred services to actually meet the needs of those they are intended to serve.
Fortunately we were able to identify a number of ways forward to solutions. The political and policy support for the development of clinical networks combined nicely with the weight of examples from support groups and clinicians on the need for change and improvement.
Interestingly, we noted the development of service improvements that arose primarily from support group initiatives that drew interested clinicians into developing a model of care specific to their needs. Examples were provided by Cystic Fibrosis Association of NZ and the DEBRA support group of service improvements that were being built from the ground up, rather than waiting for a top-down solution.
Read the workshop outcomes which summarise the conclusions from our discussion groups and plenary session. We concluded the day with a call for urgency to implement the genetic services report, which we noted had languished in the bureaucracy for many years, but was a fundamental step to ensure early and accurate diagnosis for rare disorders. We received a commitment from Murray Horn, Chair of the National Health Board, to consider specific proposals arising from our workshop for addition to the NHB work plan. This was significant progress given the tendency for even the freshest of initiatives to invariably focus on common conditions with large budget implications.