FOI release

Rare Disease Patients and Treatment

This request was refused in part, so we didn't provide some of the information the requester asked for. This may include information where we can neither confirm nor deny that we hold it.

Case reference FOI2026/03482

Received 27 July 2026

Published 21 August 2026

Request

REQUEST: Q1. How many total patients has the trust seen within the latest 24 months of available data (for any reason), with a recorded diagnosis of Dravet Syndrome (DS)

Q2. Of total DS patients, how many have been treated with Epidyolex (Cannabidiol) in the last 12 months?

Q3. Of total DS patients, how many have been treated with Fintepla (Fenfluramine) in the last 12 months?

Q4. How many total patients has the trust seen within the latest 24 months of available data (for any reason), with a recorded diagnosis of Lennox-Gasteau Syndrome (LGS)?

Q5. Of total LGS patients, how many have been treated with Epidyolex (Cannabidiol) in the last 12 months?

Q6. Of total LGS patients, how many have been treated with Fintepla (Fenfluramine) in the last 12 months?

Q7. How many adult (aged 18+) patients has the trust seen within the latest 24 months of available data (for any reason), with a recorded diagnosis of Dravet Syndrome (DS)

Q8. How many adult (aged 18+) patients has the trust seen within the latest 24 months of available data (for any reason), with a recorded diagnosis of Lennox-Gasteau Syndrome (LGS)

Response

REQUEST: Q1. How many total patients has the trust seen within the latest 24 months of available data (for any reason), with a recorded diagnosis of Dravet Syndrome (DS)

Answer - we are unable to identify Dravet Syndrome (DS) as there is no ICD10 code for that diagnosis.

Q2. Of total DS patients, how many have been treated with Epidyolex (Cannabidiol) in the last 12 months?

Answer - we are unable to identify Dravet Syndrome (DS) as there is no ICD10 code for that diagnosis.

Q3. Of total DS patients, how many have been treated with Fintepla (Fenfluramine) in the last 12 months?

Answer - we are unable to identify Dravet Syndrome (DS) as there is no ICD10 code for that diagnosis.

Q4. How many total patients has the trust seen within the latest 24 months of available data (for any reason), with a recorded diagnosis of Lennox-Gasteau Syndrome (LGS)? Answer – 32

Q5. Of total LGS patients, how many have been treated with Epidyolex (Cannabidiol) in the last 12 months?

Answer – <5

All values given as <5 are done so to prevent this data from being person identifiable. This is done under section 40 (2) of the FOIA. 

Q6. Of total LGS patients, how many have been treated with Fintepla (Fenfluramine) in the last 12 months?

Answer – <5

All values given as <5 are done so to prevent this data from being person identifiable. This is done under section 40 (2) of the FOIA. 

Q7. How many adult (aged 18+) patients has the trust seen within the latest 24 months of available data (for any reason), with a recorded diagnosis of Dravet Syndrome (DS)

Answer - We are unable to identify Dravet Syndrome (DS) as there is no ICD10 code for that diagnosis.

Q8. How many adult (aged 18+) patients has the trust seen within the latest 24 months of available data (for any reason), with a recorded diagnosis of Lennox-Gasteau Syndrome (LGS)

 

Answer - We are unable to identify patients diagnosed specifically with Lennox-Gasteau Syndrome (LGS), as that specific diagnosis falls within a group of other epileptic symptoms.

 

 

Documents

There are no documents for this release.

This is Oxford University Hospitals NHS Foundation Trust's response to a freedom of information (FOI) or environmental information regulations (EIR) request.

You can browse our other responses or make a new FOI request.