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Responses > Dravet Syndrome/Lennox-Gastaut Syndrome

Freedom of Information request Dravet Syndrome/Lennox-Gastaut Syndrome

Response published: 25 June 2025
Misc

FOI Request

I would like to submit an FOI request for the following data for Gloucestershire Health and Care NHS Foundation Trust: • The number of patients treated for Dravet syndrome in 2024, ideally separated by month, or quarter o Patient numbers segmented by age:  0-3 years old  4-8 years old  9-18 years old  18 years+ • The number of patients treated for Dravet syndrome in 2025, ideally separated by month, or quarter o Patient numbers segmented by age:  0-3 years old  4-8 years old  9-18 years old  18 years+ • The number of patients treated for Lennox-Gastaut syndrome in 2024, ideally separated by month, or quarter o Patient numbers segmented by age:  0-3 years old  4-8 years old  9-18 years old  18 years+ • The number of patients treated for Lennox-Gastaut syndrome in 2025, ideally separated by month, or quarter o Patient numbers segmented by age:  0-3 years old  4-8 years old  9-18 years old  18 years+ • The above data separated by treatment, focusing on the following treatments: o fenfluramine o sodium valproate o stiripentol o clobazam o cannabidiol o levetiracetam o topiramate o potassium bromide o Other treatments  carbamazepine  gabapentin  lacosamide  lamotrigine  oxcarbazepine  phenobarbital  pregabalin  tiagabine  vigabatrin  rufinamide • Numbers of patients moving from one specific treatment to another e.g. fenfluramide gains from cannabidiol, sodium valproate losses to cannabidiol • Alternatively, just the numbers of patients on each treatment for each month/quarter will be able to show how the numbers on each treatment are changing

FOI Response

Freedom of Information Request – Ref: FOI 080-2025

Thank you for your recent Freedom of Information request. Please find our response below.

You asked:

  • The number of patients treated for Dravet syndrome in 2024, ideally separated by month, or quarter
    • Patient numbers segmented by age:
      • 0-3 years old
      • 4-8 years old
      • 9-18 years old
      • 18 years+
  • The number of patients treated for Dravet syndrome in 2025, ideally separated by month, or quarter
    • Patient numbers segmented by age:
      • 0-3 years old
      • 4-8 years old
      • 9-18 years old
      • 18 years+
  • The number of patients treated for Lennox-Gastaut syndrome in 2024, ideally separated by month, or quarter
    • Patient numbers segmented by age:
      • 0-3 years old
      • 4-8 years old
      • 9-18 years old
      • 18 years+
  • The number of patients treated for Lennox-Gastaut syndrome in 2025, ideally separated by month, or quarter
    • Patient numbers segmented by age:
      • 0-3 years old
      • 4-8 years old
      • 9-18 years old
      • 18 years+
  • The above data separated by treatment, focusing on the following treatments:
    • fenfluramine
    • sodium valproate
    • stiripentol
    • clobazam
    • cannabidiol
    • levetiracetam
    • topiramate
    • potassium bromide
    • Other treatments
      • carbamazepine
      • gabapentin
      • lacosamide
      • lamotrigine
      • oxcarbazepine
      • phenobarbital
      • pregabalin
      • tiagabine
      • vigabatrin
      • rufinamide
  • Numbers of patients moving from one specific treatment to another e.g. fenfluramide gains from cannabidiol, sodium valproate losses to cannabidiol
  • Alternatively, just the numbers of patients on each treatment for each month/quarter will be able to show how the numbers on each treatment are changing

Our response:

The Trust does not provide the service mentioned on your request. Please contact Gloucestershire Hospitals NHS Foundation Trust.

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.