FOI 6992 - Dravet syndrome
Date: 29 December 2021 to 29 December 2023
I am writing to you under the Freedom of Information Act 2000 to request the following information from neurology or psychology departments treating patients with Dravet syndrome, for the purpose of researching the services provided for patients with this condition.
Please detail:
- What services are provided by your hospital for patients with Dravet syndrome?
- Treatment initiation
- Titration of dose (consider both starting and maintenance treatment)
- Monitoring (incl. echocardiographies, liver function tests, etc.)
- Review of clinical presentations (frequency, duration)
- On-going prescription of treatments
- Completing the Blueteq forms
- Other ….
- If services are not provided at your hospital
- Where are patients referred to?
- What services do they receive at the other location (see above list for examples)?
We would like to later publish the information provided in your response, in line with Re-Use of Public Sector Information Regulations (18th July 2015). Information will be reproduced accurately and not used to mislead.
- Request ID:6992
- Category:Clinical - Service Activity Data
- Response:
December 2021
Thank you for your recent request under the Freedom of Information Act 2000.
The information you have requested is as follows:
I am writing to you under the Freedom of Information Act 2000 to request the following information from neurology or psychology departments treating patients with Dravet syndrome, for the purpose of researching the services provided for patients with this condition.
Please detail:
? What services are provided by your hospital for patients with Dravet syndrome?
o Treatment initiation
o Titration of dose (consider both starting and maintenance treatment)
o Monitoring (incl. echocardiographies, liver function tests, etc.)
o Review of clinical presentations (frequency, duration)
o On-going prescription of treatments
o Completing the Blueteq forms
o Other ….
? If services are not provided at your hospital
o Where are patients referred to? All specialist care is provided by the Evelina Children’s Hospital (London) until 18 years, with local support from Medway NHS Foundation Trust.
o What services do they receive at the other location (see above list for examples)?
We would like to later publish the information provided in your response, in line with Re-Use of Public Sector Information Regulations (18th July 2015). Information will be reproduced accurately and not used to mislead.
