Thalassaemia and sickle cell disease

About the service

There are over 100 children registered at this hospital with a red cell disorder or Haemoglobinopathy.

Most of the of our children have sickle cell disease or thalassaemia major.

The clinic is open from Monday to Friday between 9am and 5pm.

The Haematology Ward (Ward 6) is open 24 hours a day. Children with haemoglobin conditions have direct access for admission to the Ward.

Blood transfusions are given on the Day Ward.

Haemoglobinopathy

A haemoglobinopathy is a disorder of the blood. The red blood cells have a substance called ‘haemoglobin’ which carries oxygen around the body.

The Haemoglobinopathy clinic is on Thursdays from 10am till 1pm. The clinic offers:

• reviews and follow up appointments
• growth and measurement review
• transcranial doppler (TCD) screening

It also links you with other services.

Sickle cell disease

Children with sickle cell disease will usually manage most of their care at home, and come to the clinic for check ups every 3 months, or as needed.

We would like you to contact us in between your clinic appointments if you have concerns about any of the following:

• pain that is not controlled by usual medication
• chest pain
• breathlessness
• tummy pain or swelling
• jaundice or general unhealthy look
• headache or drowsiness with other signs of stroke
• Facial weakness, weakness in the arms or slurred speech
• High temperature or fever

Thalassaemia

Children with beta thalassaemia major need to attend Ward 3 and 4 weekly for their blood transfusion and to collect their prescription for their iron chelation.

The clinic is every 4 months to review progress and treatment.

In between these visits, please contact us with any concerns about the following:

• high temperature or fever (particularly in children with port-a-caths)
• feeling unwell after transfusion
• jaundice or general unhealthy look after transfusion
• problems with chelation

The specialist nurses are available for support and advice about your condition. They can also discuss holidays and school events to minimise disruption to family life. Home and school visits can be arranged as needed.

Other services

Other services that are available include:

• Hearing services for hearing tests as needed
• Dietitian for advice on diet and vitamin supplementation
• Genetics for counselling and information about genetic conditions such as sickle cell disease and thalassaemia
• Eye department for eye tests and monitoring as needed
• Pain team for expert advice on pain management
• Pharmacists for advice on medication
• Physiotherapists for problems with movement or mobility
• Psychology for support with living with a life long condition and help to develop coping strategies to deal with effects of the condition on daily life

Interpreters are also available for consultations. We must have this information with enough notice before booking your appointments so that we can book this for when you attend our clinic.

We can also make referrals to bone marrow transplant, endocrinology, ENT, respiratory and surgical teams if needed.

We have links with schools, direct with school nursing service, and with the haematology Ward (Ward 6) teachers.

The local support group South Yorkshire Sickle Cell Organisation (SYSCO) can offer further help and assistance.

We have links with consultants at the Royal Hallamshire Hospital for advice for teenagers when transitioning to adult services.