SMA-Focused Advice from Leading UK Neuromuscular Experts
Page last updated: 1st April 2020
The following guidance is based on advice from a group of neuromuscular clinical experts who lead the adult and children’s NorthStar and SMA REACH clinical networks and work across a wide range of neuromuscular conditions. All the patient groups have been asking, and continue to ask, more detailed questions. We are immensely grateful to the clinicians for providing answers on top of the very stressful caring roles they continue to fulfil.
We will add new Q&As that build on advice up to 29th March (see below). If you have a general clinical question about Covid-19 and SMA that you would like us to ask, please email: firstname.lastname@example.org
Q&As to 29th March
How vulnerable am I?
Currently there is no specific information on whether people living with a muscle-wasting condition are at increased risk of infection with COVID-19. However, the clinical expert group agree that people with any diagnosed or undiagnosed neuromuscular condition should consider themselves as being at high risk of getting seriously ill from coronavirus and they should practice shielding. This includes children, young people and adults who have SMA.
What is Shielding?
Shielding is a practice used to protect the “extremely vulnerable” from coming into contact with COVID-19 by minimising all interaction with other people, in case they are carrying COVID-19. This means that those who are extremely vulnerable should not leave their homes. Within their homes they should minimise all non-essential contact with other members of their household. At the moment this is expected to be for at least 12 weeks.
Advice from the Association of British Neurologists makes it clear that people with a ‘muscle disease’ may be significantly at risk of being severely ill from COVID-19. They state that:
Shielding is particularly important for people:
- at respiratory risk (ventilated (tracheostomy, BiPAP, CPAP), Forced Vital Capacity less than 60%, weak cough
- usually advised to receive the annual influenza vaccine
- who have difficulty swallowing
- with cardiac (heart-related) complications in their condition
- on oral steroids or other immunosuppressants (such as methotrexate). You should not stop treatment and, if possible, ensure that you have a supply at home. If you become unwell, you may need to increase the dose as advised by your specialist service.
- with risk of decompensation (functional deterioration of a bodily system) during infection such as mitochondrial disease.
If possible, all household members should adopt these shielding measures for themselves. Household members for whom this is not possible should stringently follow guidance on social distancing, reducing their contact outside the home to essential shopping. Handwashing and all other protective measures are vital. Follow the advice for everyone on the NHS Website and check our general advice page as well for useful summaries and links.
You can find more advice about shielding and how to manage this on the NHS website, here.
Letters were being sent out to those who are classed as “extremely vulnerable”. We're aware a few people have had letters; if you have not received a letter and feel you fit into this category, you may still want to contact your GP or health professional but you may also want to look at other ways of getting support. If you would like to talk this through with a member of our team, please contact us by emailing email@example.com or phoning 01789 267520 - please leave your number and we will call you back.
What about people coming into my home to support me?
These visits should continue, but Personal Assistants (PAs), carer and care workers must stay away if they are showing symptoms of COVID-19. You can find further advice in this section.
You should try to have an alternative list of people who can help you with your care if your main carer becomes unwell. You can also contact your local council for advice on how to access alternative care.
We are very aware that people who employ their own PAs and families who rely on grandparent and other help face worrying times if any of them fall ill. Muscular Dystrophy UK (MDUK) and the Patient Groups are trying to provide further guidance on this with the support of clinical specialists.
What help can I get with essential supplies?
People who are ‘extremely vulnerable’ can register for support, such as help with deliveries or getting essential supplies, via the Government website here. Clinicians, patient groups and politicians have strongly advised NHS England of the need to ensure people with neuromuscular conditions are regarded as ‘extremely vulnerable’ so that they can access additional support - but have not yet heard back. We suggest you anyway try to register as such via the online form and then when you get to the page entitled, "Do you have a medical condition that makes you extremely vulnerable to coronavirus?", try ticking point three from the bottom that starts, "have a rare disease...".
Can children go to schools and nursery?
All people in the household of someone with a neuromuscular condition should avoid nursery, school and college, even in cases where they have an Education Health Care Plan (EHCP) in place.
Parents who consent to changes to, or reductions in, their child’s provision during this outbreak will not be considered to have agreed a permanent change to what their child needs in their EHC plan.
I am a key worker and cannot work from home.
Let your employer know your position as a person who has SMA or someone who has to care for and shield someone who has SMA. If they require any evidence, give them the link to this website. GPs and health professionals must focus on caring and cannot be expected to provide written evidence. If you think SMA UK can help with a letter, contact us at firstname.lastname@example.org
Keeping you updated with any new advice
We are regularly updating this guidance. 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. We are forwarding any more general SMA clinically-related questions to MDUK who will email a compiled list twice a week to our panel of UK paediatric and adult neuromuscular experts. The responses will be posted on this page.
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.