The Rett clinic is a specialist outpatient clinic for children with Rett syndrome.
It runs every other Monday, with appointments at 1:30pm and 3:00pm.
How do I get an appointment?
We accept secondary or tertiary care medical referrals of any patient with genetically confirmed Rett syndrome or clinical features suggestive of Rett syndrome up to the age of 16. We also accept referrals where there is a query around the clinical diagnosis of Rett syndrome.
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 gstt.elchpaedneurodisabilityreferrals@nhs.net or by post to:
Rett clinic secretary
Evelina London Children’s Hospital
Children’s neurosciences,
Becket House level 2,
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 consultant paediatric neurologist, 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, as well as by the referrer.
We are a teaching hospital, so may have students or visitors with us who observe appointments. 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.
More information
Rett UK charity website – a national charity seeking to make a difference for people living with Rett syndrome.