Wales is following England’s guidance as to who may have access.

Newly diagnosed Welsh infants will be referred to Cardiff for the genetic test to confirm SMA.

• Infants living in South / Mid Wales will then be referred to University Hospitals Bristol and Weston NHS Foundation Trust
• Infants living in North Wales will be referred to Manchester University NHS Foundation Trust

The Healthcare Professional at Bristol / Manchester has to submit an Individual Funding Request (IFR) to NHS Wales who have confirmed that they will provide an answer within 5 working days. Once the IFR has been approved by NHSW, the infant is then referred to Bristol / Manchester. There will be a discussion at the National Multidisciplinary Team about what benefits and risks zolgensma treatment would present for the infant and, if approved by the NMDT, an infusion date / centre would be confirmed.

The infusion centre and Cardiff, liaise over AAV9 testing and pre / post-infusion bloods.

Our summary guide, discussing all the potential treatments, may also be useful, even if you live elsewhere: Drug Treatments for Children in England who have SMA.

We understand that Northern Ireland will follow England’s guidance as to who may have access.

Any infant that is under 7 months and has had no previous treatment is treated at Belfast Children’s Hospital at the discretion of the lead clinician. Funding approval is applied for via a Cost Per Case (CPC) basis via the Health and Social Care Board (HSCB) for NI commissioning team.

If an infant is 7 months or older and fulfil the English criteria they are referred to the National Multidisciplinary Team for advice. Once the NMDT gives positive advice, then funding approval from the HSCB for NI is given, again via the CPC route.

Our videos (please see below) and our summary guide Drug Treatments for Children in England who have SMA may also have useful information, even if you live elsewhere.