The specialist nurse for haemoglobinopathies works with families and individuals with sickle cell disease, thalassemia and other haemoglobinopathies to achieve optimum health, prevent complications and reduce hospital admissions.
Haemoglobinopathies are a group of recessively inherited genetic conditions affecting the haemoglobin component of blood. They are caused by a genetic change in the haemoglobin.
What we offer
- Partner testing for antenatal women who are carrier/trait status and counselling for couples found to be at risk.
- Guidance and support for parents and carers throughout the process of diagnosis, planning care and liaising with other health professionals.
- Home visits to offer support, encouragement and empowerment.
- Health promotion advice to parents or carers whose children have been found to be carriers/trait.
- Health care plans for children in nursery or school diagnosed with health needs that may impact on their wellbeing.
- Attendance at health reviews with the paediatric consultant.
- Assistance in the transition from paediatric care to adult care
- Training sessions for various agencies, families and establishments to inform and educate attendees of children in their care
- Information about benefits patients may be entitled to.
- Community events in collaboration with voluntary agencies to raise awareness of the disorders