Haemoglobinopathy

Approximately 140 patients with a red cell disorder or haemoglobinopathy are registered at Sheffield Children’s Hospital.

Referrals come from the whole of the South Yorkshire, North Derbyshire and North Lincolnshire.

Most patients have sickle cell disease or thalassaemia major and a small number have less common haemoglobinopathies.

Specialist nurses are available for support and advice about your child’s condition. Arrangements for holidays and school events are discussed to minimise disruption to family life. Home and school visits are arranged as required.

Sickle cell disease

Patients with sickle cell disease will usually manage most of their care at home, coming to the clinic for check-ups as required.

We advise patients/parents to contact us in between clinic appointments if they have concerns about any of the following:

• pain that is not controlled by usual medication
• chest pain or breathlessness
• abdominal pain or swelling
• jaundice or pallor
• headache or drowsiness with other signs of stroke e.g. facial palsy, weakness in the arms, slurred speech
• high temperature / fever
• Thalassaemia and other rare anaemias

Most patients attend the Haematology Day Care Unit to receive their transfusions every three to five weeks. Patients also attend the haemoglobinopathy clinic three times per year. In between any clinic or transfusion visits patients can contact us on the details below with any problems.

Patients are transferred to the service at the Royal Hallamshire Hospital between the ages of 16 and 18 after undertaking a period of transition which involves meeting the team from Sheffield Teaching Hospitals and visiting the unit.

Haemoglobinopathy clinic

• Monday and Thursday, from 9.30am – 1.30pm
• review and follow-up appointments
• growth and measurement review
• trans-cranial Doppler screening
• links with other services available
• specialist support from psychology and Citizens Advice Service

We work closely with midwives, paediatric and adult haematology services, general practitioners, health visitors and school nurses, as well as the regional screening unit.