Assessment is multi-disciplinary and holistic in its approach, completed using a combination of internet-based questionnaires, audio-conferencing, wearable sensor technology and face-to-face review including blood tests and ECGs. Patients will then be managed over time using audio-conferences for regular monitoring and face-to-face visits based on clinical need. In addition, support is offered to parents/carers where required, and consultation and supervision is offered to local services to help them to modify interventions in view of the individual’s complex profile.
For CCG referrals, please contact the CPMRS team directly: firstname.lastname@example.org
If you are the parent or carer of a child or adult with Rett Syndrome or a related disorder and would like the person to be remotely monitored by the CPMRS, please email: email@example.com
For any questions please email firstname.lastname@example.org
Once you have completed these questionnaires, the CPMRS team will analyse your responses and they will get in touch to let you know next steps within approximately 4-6 weeks of receipt of your completed questionnaires. The CPMRS will always aim to assess children, young people and adults as soon as possible but this will also be determined by clinical need and risk. Therefore, they will also always ask parents/carers to continue monitoring via online questionnaires on a three-monthly basis if you are awaiting assessment.