SCSI Stakeholders

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Currently, SCSI works with various individuals, groups and organisations in Ireland, and hopes to broaden the stakeholder base during the period covered by the Strategic Plan. The following are current and prospective stakeholders:

Primary Stakeholders: These include organisations and groups that have a major interest in the success of SCSI’s projects and are directly affected by the outcomes, positively or negatively. They include:

  • Individuals living with sickle cell and their families/friends, who directly benefit from SCSI’s work;

  • Health care providers, including both medical and allied health professionals,  whose work impacts on the lives and well-being of people living with or affected by sickle cell, e.g. Irish Blood Transfusion Services (St. James’s Hospital); Crumlin Children’s Hospital; Royal College of Surgeons Ireland; and other hospitals in various counties in Ireland;

  • Community representatives, including daycare workers, school teachers, employers and others;

  • Statutory agencies who impact on the lives of people living with sickle cell and their families, in particular the HSE; the Department of Health; the Department of Social Protection;

  • Non-Governmental Organisations (NGOs) whose work directly impact on the lives and well-being of people affected by sickle cell;

  • Sponsors: funders and donors; and

  • SCSI directors, project managers, and team members.

Secondary Stakeholders: These are groups or organisations who are not directly affected by SCSI’s work, but who interact with it and can also act as intermediaries in the delivery process.  They include:

  • NGOs, such as Irish Haemophilia Society (IHS), and migrant-led associations whose efforts can impact on SCSI’s work in the drive to achieve a better life for individuals affected by sickle cell;

  • Academic and research institutions whose research/work contributes existing knowledge about sickle cell and the human rights of people affected by the condition, e.g. Worldwide Initiative on the Social Study of Haemoglobinopathies (WISSH); Unit for the Social Study of Thalassaemia and Sickle Cell at De Montfort University, UK; School of Applied Social Sciences, University College Dublin; School of Social Work and Social Policy, Trinity College Dublin; and Irish Royal College of Surgeons.

  • SCSI’s external partners and groups who advocate for the rights of people living with cell, especially Sickle Cell Society UK; PESCA; Global Sickle Disease Network (GSCDN);

  • Irish Trade Unions, such as SIPTU and ICTU;

  • Lobby and advocacy groups, whose work/campaign impacts on SCSI’s efforts towards the creation of a policy on sickle cell in Ireland.

Tertiary Stakeholders: These are groups who are not involved or affected by SCSI’s work, but can influence opinions about its work: They include:

  • The wider Irish public