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

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

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

The Healthcare Professional at Bristol or Manchester submits an Individual Funding Request (IFR) to NHS Wales who  provide an answer within 5 working days.

Once the IFR has been approved by NHS Wales the infant is then referred to the Bristol or Manchester Infusion Centre. There is a discussion at the National Multidisciplinary Team about what benefits and risks zolgensma treatment would present for the infant. If approved by the NMDT, an infusion date  and centre would be confirmed.

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

Northern Ireland follows 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. This is via the Health and Social Care Board (HSCB) for NI Commissioning Team.

If an infant is 7 months or older and fulfils 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.