Promoting Sickle Cell and Thalassaemia through the Carers Forum
The Carers Forum builds on the good practice and success of the 2003 self-help group pilot project for people with Sickle Cell and Thalassaemia and is sponsored by Oscar Sandwell.
The Carer’s Forum represents individuals and carers of those affected by Sickle Cell or Thalassaemia blood disorders. Since 1999, OSCAR Sandwell has always been an important part of the community as a resource centre for local people, not just for Sickle Cell and Thalassaemia Sufferers.
The Carer’s Forum aims to:
- Provide local people with sound and accurate information about their conditions and will increase their confidence and sense of well-being.
- Empower them to take action on their own health and how to support others, especially those from the black and ethnic minority communities.
- Address barriers that currently prevent people from accessing services and information and will work with local professionals and agencies to increase awareness of the needs of people affected by Sickle Cell and Thalassaemia and other life-limiting illnesses.
The Forum is more than just a continuation of the self-help group as it will also focus on additional areas of work:
- Strengthening the patient voice at a local level in partnership with health professionals and within medical settings
- Community research to find out more about the disease.
- Encouraging increased take-up of screening services.
- Working with local agencies and professionals to improve awareness and provide training on Sickle Cell and Thalassaemia and other chronic diseases.
- Ensuring the services and activities provided by Oscar Sandwell are inclusive and accessible.