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 Update Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19: The government has updated its guidance for people who are shielding taking into account that coronavirus COVID-19 infection rates have decreased significantly over the last few weeks. This guidance remains advisory. The updates are detailed below and these will come into effect on 6 July and 1 August in England. We know that some people living with muscle-wasting conditions will welcome the prospect of ending shielding, while others will be 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 true as people contemplate returning to work or making decisions about sending children back to school. We strongly recommend you speak with your neuromuscular consultant if you have concerns about changing any shielding behaviour. 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 People who are shielding remain vulnerable and should continue to take precautions but may now choose to leave their home, as long as they are able to maintain strict social distancing. If you choose to spend time outdoors, you may do so with members of your own household. If you live alone, you can spend time outdoors with one person from another household or you may choose to spend time outdoors with one person from another household. Ideally, this should be the same person each time. If you do go out, you should take extra care to minimise contact with others by keeping 2 metres apart. This guidance will be kept under regular review. On 22 June the government set out a series of steps for further relaxing shielding guidance which will come into effect on 6 July and 1 August. From 6 July, the government will be advising: you may, if you wish, meet in a group of up to 6 people outdoors, including people from different households, while maintaining strict social distancing you no longer need to observe social distancing with other members of your household in line with the wider guidance for single adult households (either an adult living alone or with dependent children under 18) in the general population, you may from this date, if you wish, also form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other’s homes, including overnight, without needing to socially distance From 1 August the government will be advising that shielding will be paused. From this date, the government is advising you to adopt strict social distancing rather than full shielding measures. Strict social distancing means you may wish to go out to more places and see more people but you should take particular care to minimise contact with others outside your household or support bubble. In practice this means that from 1 August: you can go to work, if you cannot work from home, as long as the business is COVID-safe children who are clinically extremely vulnerable can return to their education settings if they are eligible and in line with their peers. Where possible children should practise frequent hand washing and social distancing you can go outside to buy food, to places of worship and for exercise but you should maintain strict social distancing you should remain cautious as you are still at risk of severe illness if you catch coronavirus, so the advice is to stay at home where possible and, if you do go out, follow strict social distancing The guidance for the clinically extremely vulnerable group remains advisory. More detailed advice will be updated in this guidance as the changes in advice come into effect on 6 July and 1 August. This guidance is for England, the RCPH has further advice and details for all UK countries. Please click on the links below to read the information we have shared for patients on coronavirus.