NICE has begun the process to review data collected as part of the Managed Access Agreement (MAA) for nusinersen. Specifically, it will consider whether people who have SMA Type 3 who are unable to walk can benefit from the treatment and therefore should be included in the MAA. NICE expects to publish a final decision in 6 months.

NHS England and the Neuromuscular Centres need to be ready for the possibility of a positive recommendation for change. As it's important that everyone who might be eligible is contacted, SMA UK has agreed to put out this brief survey via the Patient Groups, even though a positive recommendation may not be made. Whether you are known or not to a Centre, please let us know if you would want nusinersen treatment so that we can pass this information on to help with service planning.

Please note your response to this survey is not a referral for individual treatment, which must be via a medical team. If the outcome of the review does recommend a change in the MAA, other eligibility /starting criteria will still be in place and you will need to be assessed by a medical team at one of the specialist neuromuscular treatment centres.

Your response to this survey will help link you with NHS England and the Neuromuscular Centre(s) that would provide this service if it is recommended, but it does not commit you to any decisions or preferences you express – you will be able to change your mind.

SMA UK will collate all responses to this survey and share the information with NHS England and the Neuromuscular Centres.

You will be asked at the end of the survey what information you consent to being shared.

It should take around 5 - 10 minutes to complete.

The closing date for this survey is Sunday 13th December 2020.

Thank you. 

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* 1. Please tell us who is completing this survey

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* 2. Please confirm that the person who has SMA Type 3 lives in England before you carry on with this survey. 

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* 3. How old is the person with SMA Type 3?

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* 4. Please give the first half of the person with SMA Type 3's postcode (letters/digits).

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* 5. Does the person with SMA Type 3 have a scoliosis / spinal intervention (had or planned) that may prevent a clinician from being able to safely administer nusinersen treatment via lumber puncture?

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* 6. The Centres listed below currently have a contract that allows them to offer treatment with nusinersen. Please tick any ones which provide you with care and management for your SMA. 

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* 7. The Centres listed below currently have a contract that allows them to offer treatment with nusinersen. Please tick the one that is nearest to you and, if different, the one you would like to attend if you were eligible for  treatment. 

  Nearest Preferred
Bristol North NHS Trust
Kings College London NHS Foundation Trust
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, London NHS Foundation Trust
Southampton NHS Trust
The Newcastle upon Tyne Hospitals NHS Foundation Trust
University College London Hospitals NHS Foundation Trust
University Hospitals Birmingham NHS Foundation Trust

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* 8. Do you have  your own transport and support to get you safely to and from appointments at the treatment centre(s) you have selected?

  My nearest Centre My preferred Centre
Yes
No 
Don't know 

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* 9. If you said 'no' or 'don't know' to Q.8, what transport and /or support would you need to get you safely to and from treatment appointments?

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* 10. Is there anything else you would like to tell us?

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* 11. Please let us know if you are willing to share your name and contact details with NHS England and the treatment centre(s). This will be a huge help for planning purposes. We will not share this information with anyone else.

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* 12. If you would like to tell us who you are, please complete the details below. We will make sure to follow the instruction you have given us in your answer above.

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