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Providing vital funding for projects that help improve patient care.
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Haemoglobin disorders rank as one of the most common genetic disorders in the UK. Evidence suggests that the knowledge of health care professionals involved in the care of this client group is limited, so there is a strong case for investing in improving knowledge of sickle cell disorders.
Primary healthcare workers play a very important part in helping to recognise symptoms at an early stage and managing the condition at home. If there are problems, speedy treatment can make the difference of being managed at home or being admitted to hospital. It can also determine the length of stay in hospital and occasionally the difference between life and death.
For disadvantaged groups such as asylum seekers, the main point of contact with health care professionals may be with the GP or Health Visitor and if they have to move to a different location, the only information they carry with them may be the child health care record.
This project aims to empower patients, carers and health professionals to support children with haemoglobin disorders in the community, in order to improve their quality of life and reduce hospital admissions. It also sought specifically to improve the understanding of the condition in schools. Better understanding and small adjustments can make a huge difference to the quality of life of children with sickle cell disease during the school day. It can also help to reduce absenteeism and improve educational as well as health outcomes.
Support from the QNI enabled us to produce an insert for the child health record, and an information pack for teachers and school nurses to ensure that children with sickle cell disease receive a better and more consistent standard of care in schools.