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Page last updated: 2nd December 2022

It’s recommended that you choose the centre nearest to you to avoid unnecessary travel and to ensure that you receive care for all aspects of your SMA from a team who is familiar with both you and managing SMA.

Treatment centres for adults and children >

The criteria in the Managed Access Agreement for Nusinersen and the Managed Access Agreement for Risdiplam are to be used consistently across the country, therefore it’s unlikely that one centre will consider that someone is not eligible, and another will think otherwise. However, although there is no formal appeal process, you can seek a second opinion from another treatment centre.

You will need to ask your GP to refer you to another centre on the list of agreed providers and you will need to ask your treating centre to pass on relevant clinical information to the treating centre where you are seeking the second opinion. If the second centre agrees that you should have access to treatment, there will need to be a discussion between the two clinical teams and with you to decide on the best location for treatment.

The NHS England SMA Clinical Panel can also offer advice to individual treatment centres on:

  • diagnosis
  • the MAA Starting and Stopping Criteria
  • administration of the drug.

NHS England uses its usual contract management routes to ensure that each centre is delivering a high-quality service.

The MAA Oversight Committee for Nusinersen and The MAA Oversight Group for Risdiplam, chaired by NICE, oversee the operation of all aspects of the Data Collection Arrangements (DCA). If a centre is not collecting the MAA information that it should, this will be followed up with that individual centre.

This will depend on what priority you have according to:

  • your treatment centre’s capacity
  • how many others are on the list for treatment at the Centre.

You can ask your treatment centre to give you an idea of how long you will need to wait.