The Neurological Alliance has recently confirmed its Terms of Reference, Mission and Purpose. Our action plan for 2009 covers the goals and strategies we use to achieve our Mission.

We are concerned that existing systems for consumer consultation and participation in the health and disability sector are not a particularly useful vehicle for achieving their objectives. We noted that advisory or consultation committees within DHB's, Pharmac, Disability Services Directorate and NASC's tend to have agenda setting determined by the agency, have limited opportunity for consumer engagement on policy and changes we would like to see, and tend to catch sector representatives in a cycle of briefings and discussions about systems and communications.

There is limited opportunity for consumers to set the agenda or raise matter that seek to influence policy. In some committees the terms of reference actually exclude such discussions. Overall the outcomes can be very time consuming and disempowering, calling into question the value of participation and the value of the significant expenditure on such forums.

We noted the success achieved when support groups organise themselves as a distinct group with a clear agenda and terms of reference, and engage as independent groups with government and agencies. The New Zealand Carers Alliance and the Access to Medicines Coalition were noted as good examples of this approach, and we noted the significant input of the Neurological Alliance to both of these groups.

We concluded that our action plan for the year should be to focus on building the Neurological Alliance as a distinct group, raise its profile, and engage with government and its agencies either in our own right or through wider alliances and coalitions of support groups that meet our interests and engage as an independent voice on that agenda.

We noted that this strategy implies a strategic withdrawal from, or declining Neurological Alliance representation on, a range of consumer consulation forums if they are not seen to be useful to either our consumers or us in achieving our mission.