Freedom of Information Request – Ref: FOI 090-2025
Thank you for your recent Freedom of Information request. Please find our response below.
You asked:
1. The number of unique patients with a recorded diagnosis of Dravet syndrome in 2024-2025. Likely coded as ICD-10 code G40.3 or SNOMED code of 230437002, ideally separated by month.
Patient numbers segmented by age:
0-3 years old
4-8 years old
9-18 years old
18 years+
2. The number of unique patients with a recorded diagnosis of Lennox-Gastaut syndrome in 2024-2025. Likely coded as ICD-10 code G40.4 or SNOMED code of 230418006, ideally separated by month.
Patient numbers segmented by age:
0-3 years old
4-8 years old
9-18 years old
18 years+
3. The number of unique patients who have been treated with fenfluramine in 2024-2025, separated by month
Patient numbers segmented by age:
0-3 years old
4-8 years old
9-18 years old
18 years+
For these patients, how many of them had a diagnosis of:
Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002
Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006
For these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside fenfluramine, and indicate the number of patients receiving each
4. The number of unique patients who have been treated with cannabidiol in 2024-2025, separated by month
Patient numbers segmented by age:
0-3 years old
4-8 years old
9-18 years old
18 years+
For these patients, how many of them had a diagnosis of:
Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002
Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006
For these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside cannabidiol, and indicate the number of patients receiving each
5. The number of unique patients who have been treated with cenobamate in 2024-2025, separated by month
Patient numbers segmented by age:
0-3 years old
4-8 years old
9-18 years old
18 years+
For these patients, how many of them had a diagnosis of:
Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002
Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006
For these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside cenobamate, and indicate the number of patients receiving each
6. The number of unique patients who have been treated with rufinamide in 2024-2025, separated by month
Patient numbers segmented by age:
0-3 years old
4-8 years old
9-18 years old
18 years+
For these patients, how many of them had a diagnosis of:
Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002
Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006
For these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside rufinamide, and indicate the number of patients receiving each
7. The number of unique patients who have been treated with stiripentol in 2024-2025, separated by month
Patient numbers segmented by age:
0-3 years old
4-8 years old
9-18 years old
18 years+
For these patients, how many of them had a diagnosis of:
Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002
Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006
For these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside stiripentol, and indicate the number of patients receiving each
8. The number of unique patients who have been treated with clobazam in 2024-2025, separated by month
Patient numbers segmented by age:
0-3 years old
4-8 years old
9-18 years old
18 years+
For these patients, how many of them had a diagnosis of:
Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002
Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006
For these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside clobazam, and indicate the number of patients receiving each
9. The number of unique patients who have been treated with sodium valproate in 2024-2025, separated by month
Patient numbers segmented by age:
0-3 years old
4-8 years old
9-18 years old
18 years+
For these patients, how many of them had a diagnosis of:
Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002
Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006
For these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside sodium valproate, and indicate the number of patients receiving each
10. The number of unique patients who have been treated with levetiracetam in 2024-2025, separated by month
Patient numbers segmented by age:
0-3 years old
4-8 years old
9-18 years old
18 years+
For these patients, how many of them had a diagnosis of:
Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002
Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006
For these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside levetiracetam, and indicate the number of patients receiving each
11. The number of unique patients who have been treated with topiramate in 2024-2025, separated by month
Patient numbers segmented by age:
0-3 years old
4-8 years old
9-18 years old
18 years+
For these patients, how many of them had a diagnosis of:
Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002
Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006
For these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside topiramate, and indicate the number of patients receiving each
12. The number of unique patients who have been treated with lamotrigine in 2024-2025, separated by month
Patient numbers segmented by age:
0-3 years old
4-8 years old
9-18 years old
8 years+
For these patients, how many of them had a diagnosis of:
Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002
Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006
For these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside lamotrigine, and indicate the number of patients receiving each
Our response to all the questions above:
We do not provide the services mentioned on your request.
Regarding the treatments, we do not record or report the information in a way that would enable us to provide a response to this question.
Next steps:
Should you have any queries in relation to our response, please do not hesitate to contact us. If you are unhappy with the response you have received in relation to your request and wish to ask us to review our response, you should write to:
Louise Moss
Head of Legal Services / Associate Director of Corporate Governance
c/o Gloucestershire Health and Care NHS Foundation Trust
Edward Jenner Court
1010 Pioneer Avenue
Gloucester Business Park
Brockworth, GL3 4AW
E-mail: louise.moss@ghc.nhs.uk
If you are not content with the outcome of any review, you may apply directly to the Information Commissioner’s Office (ICO) for further advice/guidance. Generally, the ICO will not consider your case unless you have exhausted your enquiries with the Trust which should include considering the use of the Trust’s formal complaints procedure. The ICO can be contacted at: The Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF.