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FOI release

FOI – 2025-3182 Cross Border Care agreements - Specialism: Inherited Metabolic Diseases or Metabolic Medicine (HTML)

Published on 09 December 2025

Date received – 12 November 2025 | Date responded – 09 December 2025

Request

How many adult patients under IMD or Metabolic Medicine specialists received cross-border care from Scotland to elsewhere within the UK?

How many paediatric patients under IMD or Metabolic Medicine specialists received cross-border care from Scotland to elsewhere within the UK?

Please provide individual data for each adults and children, year on year for the past 10 years.

Response

I refer to your freedom of information request that we received on 12 November 2025 requesting the following information.

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

Under Section 17(1) of the Freedom of Information Scotland Act, 2002 (FOISA) an organisation does not have to provide that information if it does not hold it. NHS National Services Scotland (NSS) are unable to provide data on the number of adult or paediatric patients who have received inherited metabolic disease cross-border care elsewhere within the UK.

National Services Division (NSD), part of NSS manages risk share arrangements for highly specialist care that is not available in Scotland. These arrangements are strictly financial in nature and NSD is not involved in the clinical decision-making or referral process. The patient’s NHS Board of residence maintains clinical responsibility for their patients and may also consider funding their patients to inherited metabolic disease services elsewhere in the UK. While NSD may fund referrals for some inherited metabolic services, we are not involved in the physical referral process and do not routinely track the patient journey following funding approval.

We would advise you to contact each individual NHS Board who may be able to provide you with the requested information, email addresses are as follows:

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.

If you require any further information, please contact the Associate Director Governance and Board Services (Board Secretary) within 40 working days of the date of this correspondence.

Contact

Email: nss.foi@nhs.scot

Address

NHS National Services Scotland
Headquarters
Gyle Square
1 South Gyle Crescent
Edinburgh
EH12 9EB

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.

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