How to make a referral
Please send written referral by email or post using the details in the referral contacts box on this page.
Ideally referrals should come from the secondary level paediatrician, since he or she will continue to lead care locally. However, we will also accept GP referrals.
Where we receive a GP referral, we will seek permission to contact the child’s paediatrician in order to get information on previous assessments and ongoing treatment, as well as to liaise regarding any recommendations that we make.
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.
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 occupational therapy support for splinting and optimising hand use
- scoliosis advice and surgery as appropriate
- 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.