Update on Spinraza and adult services

Published Date
Jonathan Kingsley
Spinraza SMA treatment

During an election period, Government Departments are restricted in the announcements that they are able to make or the information that they are able to publish.

The ongoing communication between NHS England and the Patient Advocacy Groups (PAGs) about implementation of the Managed Access Agreement (MAA) has recently been focused on identification of hospitals with the right expertise to treat eligible adults who have SMA with Spinraza (nusinersen).

As a part of the process hospitals were invited to submit an ‘expression of interest’ to include setting out both their expertise in treating patients with SMA and their potential ability to administer nusinersen.

This exercise has now concluded and at this stage, eight hospitals have met NHS England’s criteria for delivery of this service and have been selected:

  • Nottingham University Hospitals NHS Trust
  • Oxford University Hospitals NHS Foundation Trust
  • Salford Royal NHS Foundation Trust
  • Sheffield Teaching Hospitals NHS Foundation Trust
  • St George’s University Hospitals NHS Foundation Trust
  • The Newcastle upon Tyne Hospitals NHS Foundation Trust
  • University College London Hospitals NHS Foundation Trust
  • University Hospitals Birmingham NHS Foundation Trust

NHS England has advised these hospitals that they can now start to set up their MAA nusinersen treatment service.

It is important to note that NHS England is currently investigating whether these hospitals will be able to offer treatment to all eligible adults across the country. This includes considering geographical coverage (particularly East and South West) and any gaps. If the needs are not fully satisfied then a further selection exercise may be conducted.

Whilst NHS England and the PAGs are well aware of the travelling challenges presented if more hospitals are not added to this list, NHS England must ensure that any hospital they commission can meet the criteria set and fully meet the needs of people receiving the treatment. Their overarching aim is to ensure quality and equitable access of service.  In the coming weeks, NHS England will be talking with the providers who do now have contracts about what coverage they can offer, as well as with other potential providers about addressing the possible service gaps.

We are aware that adults have been waiting patiently for news and of the level of anxiety about access and the possibility of having to travel for treatment. However, we support NHS England to follow through with their plans which should result in a clearer picture of adults’ nusinersen treatment delivery by the end of December. At this point we should also have the answers to the many questions raised in July about the MAA and how it will work for children, young people and adults.

Further information

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