Patient societies
Updated 6 July 2018
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This publication is available at https://www.gov.uk/government/publications/handbook-for-sickle-cell-and-thalassaemia-screening/patient-societies
The UK Thalassaemia Society (UKTS) and the Sickle Cell Society (SCS) are the national charities that represent people affected by thalassaemia and sickle cell disease respectively.
Both charities work closely with the NHS Sickle Cell and Thalassaemia (SCT) Screening Programme in areas such as public outreach, patient engagement, media support, social research, lobbying, campaigning and policy and resource development.
They support the SCT programme’s aim to offer informed choice to all couples at risk of having a child affected by a major haemoglobin disorder and the right of parents to exercise this choice.
Members of the public can self-refer to both the UKTS and SCS for support and advice about screening. Information about carrier status, and the options available to ‘at risk’ couples such as prenatal diagnosis (PND), or pre-implantation genetic diagnosis is also available.
The charities can provide valuable contacts and information for parents at risk of having a child with a haemoglobin disorder. This includes putting them in touch with other parents and/or affected adults who are successfully managing their condition. They provide evidence that people who have a haemoglobin disorder can, with effective medical management, enjoy similar expectations regarding education, careers and social relationships to the rest of the population.
The 2 organisations can connect people with peers in terms of language and culture. These contacts can help inform and reassure parents who have declined PND and decided to proceed with an affected pregnancy. This peer support is highly valued by service users.
The charities can also signpost parents to national sickle cell/thalassaemia centres and the Sickle Cell and Thalassaemia Association of Nurses, Midwives and Allied Professionals.
Health professionals who are in contact with carriers of a haemoglobin disorder, at-risk couples or affected individuals should give them the details of the relevant society and explain that these support services are available and free to service users.