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Your child's appointment with the sickle cell and thalassaemia service

This page explains what you and your child can expect at your sickle cell and thalassaemia appointment.

How do I get an appointment?

You and your child will usually come to us following diagnosis as part of the National Sickle Cell and Thalassaemia Screening Programme

Cancelling or changing your appointment

If you need to change or cancel your child’s appointment for any reason, please contact the service on 020 7188 4000.

Please tell us as soon as possible so we can offer the appointment to another patient. 

Before your appointment

Please bring along your child’s red book (personal child health record) to your appointment.

It is also helpful to bring with you a list of any medication your child is using. 

During your appointment

You and your child will be seen in a clinic by a 'multidisciplinary' team. This means that you will see a specialist consultant and other health professionals such as nurse specialists, community nurses and psychologists. All of these people work together to support and care for your child and family.

During your visit to the clinic, we may need to arrange for your child to have a blood test or a scan to check the blood flow to their brain. These tests will be carried out at the clinic during your appointment.

As we are a teaching hospital, students and visitors may be observing the team. We will always ask your permission for them to observe your appointment.  

After your appointment

The consultant or doctor you see will decide when you will need to come back to the clinic for your next appointment. Usually, we see patients every one to six months, depending on their needs.

After your appointment, we will write to your child’s GP. We will send a copy of this letter to you and to any other professionals involved in your child’s care. 

If necessary, we may arrange for you and your child to see other specialists at Evelina London.

If you have any questions or concerns about your child’s health, please call 020 7188 7774.

Useful organisations

  • Sickle Cell Society: provides support for individuals and families living with sickle cell disease. Visit the sickle cell society website or call the free helpline on 0800 001 5660.
  • The Sickle Cell and Thalassaemia Centre: provides information about sickle cell disease. Thalassaemia counsellors offer support and information. The centre can direct you to local services. Tel: 020 7414 1363.
  • South Thames Sickle Cell and Thalassaemia Network (STSTN): produces a newsletter for patients three times a year. This is a new collaboration led by doctors from Evelina London Children’s Hospital, Guy’s and St. Thomas’ Hospitals and King’s College Hospital,. More information can be found at www.ststn.co.uk.
  • Sickle Cell and Thalassaemia conference: this annual international conference is held at the Guy’s and St Thomas’, with world experts in haemoglobinopathies. For more information visit http://www.scorecharity.com/ or www.ststn.co.uk. If you are interested in attending, please email Dr Inusa

Contacts

How to find us

We hold our clinics on the ground floor of Evelina London.

Level 0 – Ocean
Evelina London Children's Hospital
Westminster Bridge Road
London SE1 7EH

How to get to Evelina London.

Support groups

Parent peer support group

When: third Monday of every month, 10am-12.30pm

Where: Mary Sheridan Centre

Call 020 3049 5993 for more information.

Welfare support drop-in sessions

When: fourth Friday of every month

Where: Evelina London Children's Hospital

Call Daniel Nyakutsey on 020 3049 6088 / 5993 for more information.

©  Guy's and St Thomas' NHS Foundation Trust.
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