Haemoglobinopathy

Approximately 80 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

Patients are transferred to the service at the Royal Hallamshire Hospital at the age of 16.

Haemoglobinopathy clinic

• Thursday mornings 10am-12.30pm
• review and follow-up appointments
• growth and measurement review
• trans-cranial Doppler screening
• links with other services available

Haemoglobinopathy nurse counsellor

Our specialist nurse counsellor provides a high quality counselling service to individuals identified as carriers of haemoglobin disorders, as well as to couples whose pregnancy may be at risk from serious inherited haemoglobin disorder.

She also provides ongoing support to patients with sickle cell and thalassaemia disorders, and to their families and carers.

The service is based at Sheffield Children’s Hospital and works at the Jessop Wing, the Royal Hallamshire Hospital and in the community.

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