Your child's appointment at the Rett clinic

The Rett clinic is a specialist outpatient clinic for children with Rett syndrome.

It runs on the second Monday of every month, 1.30-5pm. Three appointments are available in each clinic.

How do I get an appointment?

We accept medical referrals of any patient with genetically confirmed Rett syndrome or clinical features suggestive of Rett syndrome up to the age of 16.

Changing or cancelling your appointment

If you need to change or cancel your appointment please contact either the Rett clinic secretary on 020 7188 4003, or the children's appointments office on 020 7188 4000 / paediatricappointmentsneurology@gstt.nhs.uk.

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

Before your appointment

Once a referral for your child has been received you will be sent a pre-clinic questionnaire to complete.

Please fill this in with as much information as possible and return by email to gst-tr.elchpaedneurodisabilityreferrals@nhs.net or, by post to:

Rett clinic coordinator
Children's Neurosciences Centre (Newcomen Centre)
1st floor, South Wing
St Thomas' Hospital
Westminster Bridge Road
London SE1 7EH

Before your appointment we will try to gather as much information about your child, from the various health professionals involved with their care.

During your appointment

The Rett clinic is a 'multidisciplinary' clinic, which means there will be a neurodisability consultant, occupational therapist, physiotherapist and speech and language therapist present. They will ask you questions and will help to assess your child.

There will also be a representative from the charity Rett UK present to help support you and provide any further information required.

The appointments are individual and led by the main issues raised by you, the parents.

We are a teaching hospital, so often have students or visitors with us who observe appointments. They may want to observe yours. If you’re not happy with this please say so.

After your appointment

We will send out a report written by the whole team summarising our findings and recommendations made during your appointment.

This will be sent to the referrer, your GP and yourselves, along with any professionals involved with your child’s care that you wish to receive a copy.