How to make a referral
Please send a written referral by email or post using the details in the referral contacts box on this page.
Referrals should come from the secondary level paediatrician, since he or she will continue to lead care locally. We also accept tertiary medical care referrals, but don’t accept GP referrals.
Referral criteria
We accept 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 question around the clinical diagnosis of Rett syndrome.
Specific indications for referral are as follows:
- assessment and advice on movement disorders and / or paroxysmal events, many of which are not epileptic in origin
- advice and/or management of breathing disorders
- management of screaming episodes and sleep disturbance
- advice on communication and feeding
- advice on complex seating issues, as well as support for splinting and optimising hand use
- advice on broader aspects of motor management
- assessment and advice on patients not demonstrating the typical mutations and/or undergoing an unusual disease progression
- general advice on prognosis or the broader management of the condition.