Tel: 01789 267520

Invitation to the Scottish SMA Community to voice your views

19 December 2017

The Scottish Medicines Consortium (SMC) will shortly be assessing the treatment nusinersen (SpinrazaTM) to decide whether it can be used by NHS Scotland for the treatment of SMA Types 1, 2 and 3. 

We have been invited to make a Patient Group Submission (PGS) to the SMC, as have the charities Muscular Dystrophy UK and the SMA Trust. We are working with them and TreatSMA, the campaign group. The SMC will not accept submissions from individuals, therefore people’s views must be expressed via one of the charity groups invited to make a submission.

The SMC wants to understand how SMA affects children, young people and adults with the condition, who live in Scotland, and their families in their day-to-day life - both practically and emotionally. It also wants to hear about their priorities and preferences and whether they think nusinersen treatment could make a difference (and if so, in what way).

We have agreed with the other charity groups, that we will contact as many people as possible in Scotland for their views.

To help you to do this, you are invited to complete the survey that best describes your circumstance.  If you follow the links below, you can download a copy of the appropriate one for you to preview / print out or complete it electronically.

If you need a printed copy sent to you, please contact us on 01789 267520 or but please note our office closes on Thursday 21st December 3.30pm and does not re-open until Tuesday 2nd January 9.00am.

Closing date to complete your survey is Friday 12th January.

If the child, young person, or adult with SMA has not received the treatment nusinersen

If your child with SMA is receiving / has received the treatment nusinersen at any time