Membership
The NHS Haemoglobinopathy Screening Programme Steering Group will consist of representatives from professional organisations, voluntary sector, users/ patient representatives, expert advisors and observers. The representatives from the professional organisations, voluntary sector, users/ patient representatives will have equal voting rights. The Expert advisors and observers will have no voting rights. There shall be one chair and one lay member of the Steering Group nominated for the duration of the implementation programme.

Responsibilities of Steering Group Members and Declarations of Interest
Steering Group members should maintain professional standards of conduct and protect the reputation of the group, advancing the interests of their particular group.

Steering Group Members shall be required to provide written notice of private, personal or pecuniary interests that they may have to the Chair. Members that have an interest in the research tenders should declare their interest to the Chair before submission of proposals.

If an issue is to be considered in the area of interest the member should withdraw from the meeting whilst the matter is discussed, and not participate in any discussion or vote on the matter.

Meetings of the Steering Group
Meetings will take place quarterly. The quorum for meetings shall be 6 representatives from the Professional Organisations, Voluntary Sector or Users.

At least 3 months notice shall be given for full Steering Group meetings, agendas and papers will be dispatched at least 10 days in advance. Late or emergency items can be tabled at the discretion of the Chair.

The agenda and minutes will be published on this web site including recording of the members present, declarations of interest and decisions taken.

A subgroup of the Steering group comprising of 3 representatives from the Professional Organisations, 1 from the Voluntary Sector and 1 user, the chair and a representative from the expert advisors can meet to facilitate the business of the full Steering Group. Minutes and decisions will be circulated to the full Steering Group.

Equal Opportunities
The Steering Group should reflect all the stakeholders with an interest and role in haemoglobinopathy screening and develop practices that are inclusive, especially to those stakeholders that are usually excluded from the decision making process.

Sandra Anglin
October 2001