Dear Oliver

Reference: FOI 422 016

Thank you for your request for information, which we received on 12
January 2023.  Please find below your request and our response.

Request / Response

1a. What number of unique patients have been treated for Lennox-Gastaut
syndrome, Dravet Syndrome and Tuberous Sclerosis Complex? Please give
answers for each condition separately.

Patient diagnoses are recorded using ICD-10 codes.  During the last 12
months there have been 3 service users with secondary diagnoses of the
code 'G40.4 other generalized epilepsy and epileptic syndromes' which
includes Lennox-Gastaut syndrome amongst other conditions.  We do not hold
more specific diagnoses.

There were no service users recorded with the other conditions listed.

1b. For each indication (Lennox-Gastaut syndrome, Dravet Syndrome and
Tuberous Sclerosis Complex), what number of these have been treated in a
paediatric environment?

2a. How many patients have been treated with Epidyolex in a paediatric
environment?

We do not provide paediatric services.

3a. Can you please detail which NHS Trusts/ Health Boards these patients
have been referred from?

All three patient mentioned above were the responsibility of NHS Sheffield
CCG/ICB.

I hope this information satisfies your request.  If you are not happy with
our response or the way your request has been dealt with you can ask for
an internal review of our decision or make a complaint.  You should write
to the Freedom of Information Lead at Sheffield Health & Social Care NHS
Foundation Trust, 1st Floor, 45 Wardsend Road North, Sheffield S6 1LX or
email [1][Sheffield Health and Social Care NHS Foundation Trust request email]  Please quote the reference number at the top of
the page in any correspondence.

If you are not satisfied with the outcome of the internal review, you have
a right to appeal to the Information Commissioner under section 50 of the
Freedom of Information Act and ask him to investigate whether we have
complied with the terms of the Freedom of Information Act.  Generally, the
Information Commissioner will not investigate a complaint unless an
internal review has been completed and / or our complaints process has
been exhausted.

The Information Commissioner can be contacted at: Information
Commissioner's Office, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9
5AF.

Telephone:  0303 123 1113   Website  [2]https://ico.org.uk/

Kind regards

Abdullah Ibrahim

Freedom of Information Administrator

Digital

Sheffield Health & Social Care NHS Foundation Trust

Email:  [3][Sheffield Health and Social Care NHS Foundation Trust request email]

Telephone: 0114 22 63966

[4]www.shsc.nhs.uk 

[5]Link to launch of SHSC Digital

References

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1. mailto:[Sheffield Health and Social Care NHS Foundation Trust request email]
2. https://ico.org.uk/
3. mailto:[Sheffield Health and Social Care NHS Foundation Trust request email]
4. http://www.shsc.nhs.uk/
5. https://jarvis.shsc.nhs.uk/news/introduc...