Responses

Dear FOI team for Gloucestershire Health and Care NHS Foundation Trust,

Where possible, I would be grateful if the requested data could be provided in an editable format (e.g. .xlsx or .csv). If this is not feasible, a table format would also be acceptable, and example layouts are suggested below for reference.

For all questions, patient numbers should represent unique patients within the specified reporting period. Where a monthly breakdown is not available, please provide unique patient numbers aggregated by quarter instead. If the tables below are not showing correctly due to formatting issues, then please let me know and I can send them in a word document.

Priority questions:

1. The number of patients under the trust’s care with a recorded diagnosis of Dravet syndrome in each month of 2025 (January–December). Patients may be counted in more than one month. Likely coded as ICD-10 code G40.3 or SNOMED code 230437002.
a. Patient numbers segmented by age:
i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ 2. The number of patients under the trust’s care with a recorded diagnosis of Lennox-Gastaut syndrome in each month of 2025 (January-December). Patients may be counted in more than one month. Likely coded as ICD-10 code G40.4 or SNOMED code of 230418006. a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ Example table for Q1 & 2: Age/Month Jan-25 Feb-25 Mar-25 Apr-25 May-25 Jun-25 Jul-25 Aug-25 Sep-25 Oct-25 Nov-25 Dec-25 <2 years old 2-8 years old 9-17 years old 18+ years old 3. The number of patients under the trust’s care who have been treated with fenfluramine in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 Example table for 3 – 12 a)i – b)ii Age group / Month Jan-25 Feb-25 Mar-25 Apr-25 May-25 Jun-25 Jul-25 Aug-25 Sep-25 Oct-25 Nov-25 Dec-25 <2 years Total patients Dravet syndrome Lennox–Gastaut syndrome 2-8 years Total patients Dravet syndrome Lennox–Gastaut syndrome 9-17 years Total patients Dravet syndrome Lennox–Gastaut syndrome 18+ years Total patients Dravet syndrome Lennox–Gastaut syndrome c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. 4. The number of patients under the trust’s care who have been treated with cannabidiol in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. 5. The number of patients under the trust’s care who have been treated with cenobamate in in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. 6. The number of patients under the trust’s care who have been treated with rufinamide in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. 7. The number of patients under the trust’s care who have been treated with stiripentol in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. Good to know questions: 8. The number of patients under the trust’s care who have been treated with clobazam in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. 9. The number of patients under the trust’s care who have been treated with sodium valproate in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. 10. The number of patients under the trust’s care who have been treated with topiramate in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. 11. The number of patients under the trust’s care who have been treated with lamotrigine in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. Many thanks,

Dear Sir or Madam,

I am writing to make a request under the Freedom of Information act

I am seeking hospital-level activity data within your health authority, as outlined below.

Dataset 1: ICD-10 Diagnosis Data

For each hospital, please provide:
• From 2022 up to the latest data available, preferably by calendar year
• Primary (first) diagnosis ICD-10 codes (three or more characters), chapters A–Q only, including patients outsourced to the private sector
• Number of cases per ICD-10 code
• Hospital name and postcode

Dataset 2: Procedures / Surgery Data

For each hospital, please provide:
• Years: 2020 up to and including 2024, preferably by calendar year
• Primary procedure OPCS codes, all chapters, including patients outsourced to the private sector
• Number of cases per OPCS code
• Hospital name and postcode

With regard to case numbers for both ICD-10 and OPCS data, we recognise that disclosure controls may apply where case numbers are fewer than five. In such instances, please indicate the value as “<5” or similar format, depending on your small-case policy. We would be grateful if the data could be provided in a machine-readable format (for example, CSV or Excel), if possible. For context, we already hold comparable datasets for most European countries. This information is collected and processed for research and pharmaceutical organisations, where it is used for market analysis and clinical trial planning. We hope this explains the purpose and potential value of supplying the requested data. Please let us know if any clarification is required. I look forward to hearing from you.