FOI – 2024-000159 Congenital Hyperinsulinism (CHI) Treatment (HTML)

Date received – 15 April 2024 | Date responded – 02 May 2024

Request

I am looking for:

Out of all the births that were registered in the whole of Scotland in the whole year from January 1st 2022 to December 31st 2022, how many babies received congenital hyperinsulinism (CHI) treatment?

Then likewise for the years 2019 and 2018. I do not wish for any personal details, I am looking only for numbers, no other details please.

Response

I refer to your freedom of information request that we received on 15 April 2024 requesting the following information:

I am looking for:

Out of all the births that were registered in the whole of Scotland in the whole year from January 1st 2022 to December 31st 2022, how many babies received congenital hyperinsulinism (CHI) treatment?

Then likewise for the years 2019 and 2018. I do not wish for any personal details, I am looking only for numbers, no other details please.

We have now completed the search of our records and can provide you with the following information:

Under Section 17 of the Freedom of Information Act, 2002 (FOISA), an organisation does not have to provide that information if it does not hold it. NHS National Services Scotland (NSS) does not hold the information you have requested. NSS, National Services Division (NSD) do not commission or provide clinical services where infants are treated for hyperinsulinemia.

We can advise that NSS NSD manage the Scottish Paediatric Endocrinology Network (SPEG) which involves clinicians from Scotland collaborating on various pieces of work to improve the diagnosis and management of endocrinological problems in children and young people. Since SPEG was established, we are aware of approximately 50 children of various ages with a diagnosis of hyperinsulinemia across Scotland.

For more information I would advise you to contact each territorial health board. Email addresses are as follows:

• Ayrshire and Arran - foi@aapct.scot.nhs.uk
• Borders – foi.enquiries@borders.scot.nhs.uk
• Dumfries and Galloway – dg.feedback2@nhs.scot
• Fife – fife.foirequestfife@nhs.scot
• Forth Valley – fv.freedomofinformation@nhs.scot
• Grampian – gram.foi@nhs.scot
• Greater Glasgow & Clyde – foi@ggc.scot.nhs.uk
• Highland – nhsh.foirequestshighland@nhs.scot
• Lanarkshire – foi@lanarkshire.scot.nhs.uk
• Lothian – foi@nhslothian.scot.nhs.uk
• Orkney – ORK.FOIrequests@nhs.scot
• Shetland – shet.foi@nhs.scot
• Tayside – tay.informationgovernance@nhs.scot
• Western Isles – wi.foi-requests@nhs.scot

I trust you will find the information of assistance and if you require any further information, please do not hesitate to contact us.

If you are unhappy with any aspect of how we have dealt with your request, you can make representations to us asking us to review the handling of your request.

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Contact

Address

If after a review you are still unhappy, you also have the right to apply to the Scottish Information Commissioner, who can be contacted at Kinburn Castle, St Andrews, Fife, KY16 9DS, or via their application form.

National Services Scotland (NSS) is committed to publishing all information released in response to Freedom of Information requests. You can view all FOI responses within our FOI Publications repository.