SMA-Focused Advice from Leading UK Neuromuscular Experts

Pages in this section last reviewed /updated: 2nd November 2020

We have been liaising with other neuromuscular charities and the clinicians about the Government’s changes to shielding advice. 

As national and local restrictions change, the government says it will only reintroduce formal shielding advice for clinically extremely vulnerable people in the very worst affected local areas and for limited periods of time. If you are in this group, you or your child will previously have received a letter from the NHS or GP telling you this. The government will write to you separately to inform you if you or your child are advised to shield again.

If you or your child are not told to shield, you may still come under the group defined as clinically vulnerable.

We know that some people welcome the prospect of not having to shield, while others are concerned about what this could mean for them and their families and may wish to continue taking extra precautions to avoid exposure to COVID-19. This is particularly relevant if people are expected to return to work or children to attend school.

It is advisable you contact your neuromuscular specialist to discuss your individual / family approach to shielding, as there are many factors that contribute to the level of risk you face. These include your neuromuscular condition as well as factors such as other health conditions you may have and your age. Your neuromuscular specialist will have knowledge of your individual health and circumstances and is best placed to provide specific advice. Please note that services are likely to be receiving a high volume of enquiries and may also adapting to a new way of working with some staff seconded to other roles.

The additional guidance below is advice gathered in April and May 2020 from the neuromuscular clinical experts who lead the adult and children’s clinical networks. It provides much useful information should it be needed. We are immensely grateful to these clinicians for responding to the Community’s questions on top of the very stressful, caring roles they continued to fulfil.

The FAQs have been grouped by the main issue being addressed, but please be aware there may be overlap. The date of the advice appears at the end of each question / answer.

Risk, Vulnerability and Protection

SMA-Specific information to have at hand 

Access to medical and clinical care, including critical care

Respiratory Issues 

Action taking place to address concerns about NHS and Social Care Covid-19 Policies

  • If you or your child are on nusinersen treatment, you will find the latest information on this page. You may find it helpful to watch our webinars about virtual assessments and coming to clinic.  
  • The British Paediatric Neurology Association (BPNA) has developed a guidance document for paediatric neurology services about the management of paediatric neurology patients during the coronavirus pandemic
  • The Association of British Neurologists (ABN) have published detailed Guidance on COVID-19 for people with neurological conditions, their doctors and carers through a link on their page here
  • If you have questions about health and social care packages and how these may be impacted, go here.

We are regularly updating these pages. We, and other patient groups, are streamlining the queries that clinicians are getting to help them juggle requests for information with the enormous task of providing care to patients. 

If you have a question, please email:

If you have specific queries relating to your personal 
healthcare or treatment that is not covered here, please contact your own specialist neuromuscular service.