Patient and Parent Support Coronavirus Resources Patient Information We know there is a lot of worry and confusion in the Duchenne community about the risks of coronavirus (COVID-19) for people with Duchenne muscular dystrophy. We are in contact with the key clinicians in the UK to make sure we are sharing with you the most up to date guidance. Please contact us if you have any questions or need advice: [email protected] Useful resources: Education webinar with Decipha: duchenneuk.org/webinar-with-decipha Emergency website duchenneemergency.co.uk Family guide https://bit.ly/dmdfamilyguide Government website www.gov.uk/coronavirus NHS website https://www.nhs.uk/conditions/coronavirus-covid-19/ My Cortisol App for advice on using your hydrocortisone pack WDO website https://www.worldduchenne.org/news/live-covid-19-coronavirus-and-duchenne-becker-muscular-dystrophy/ The British Paediatric Neurology Association guidance document for the management of paediatric neurology patients during the coronavirus pandemic Updated Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19: The government has shared updated guidance for protecting people who are clinically extremely vulnerable people in line with new national restrictions for November 2020. You can read this in full here: https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19 It is important to highlight that not every person living with Duchenne is considered clinically extremely vulnerable. If you have Duchenne or care for someone with Duchenne, and are unsure on whether this is applicable, we urge you to contact your neuromuscular consultant for personalised advice. The updated guidance, which clinically extremely vulnerable individuals are strongly urged to follow, includes: socialising: stay at home as much as possible, except to go outdoors to exercise or attend health appointments. People can exercise with those they live with or in their support bubble work: if people cannot work from home, they should not attend work. They may be eligible for Statutory Sick Pay, Employment and Support Allowance, Universal Credit or the Coronavirus Job Retention Scheme during this period of national measures. People in the same household who are not clinically extremely vulnerable can still attend work, in line with the new national restrictions school: as evidence has shown there is a very low risk of children becoming very unwell from COVID-19, most children originally on the shielded patient list no longer need to be and therefore can still attend school. If they are unsure, parents should contact their child’s usual GP or hospital clinician to check whether they should still be considered clinically extremely vulnerable. If a GP or clinician has advised that a child should remain on the shielded patient list, they are advised not to attend school. Children who live with someone who is clinically extremely vulnerable, but aren’t themselves, should still attend school going outside: avoid all non-essential travel – they should continue to travel to hospital and GP appointments unless told otherwise by their doctor. They are strongly advised not to go to any shops or to pharmacies https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19 We strongly recommend you speak with your neuromuscular consultant if you have concerns. There are many factors that contribute to the level of risk you or your child may face. Please bear in mind different hospitals are giving different care advice. Your neuromuscular specialist will have knowledge of your individual health and circumstances and is best placed to provide specific advice. Please note that services will be receiving a high volume of enquiries following the announcement of changes to the guidance on shielding and are also adapting to a new way of working with some staff seconded to other roles. For more guidance and advice for other UK countries please visit the RCPCH website: https://www.rcpch.ac.uk/resources/covid-19-shielding-guidance-children-young-people#frequently-asked-questions-on-shielding Please click on the links below to read the information we have shared for patients on coronavirus.