Patient care & support

Updates and advice from Duchenne UK's cofounders on coronavirus (COVID-19)

23rd March 2020

Over the weekend, the Government updated its advice on protecting vulnerable people, who are believed to be at most risk from coronavirus, and provided guidance for their family, friends and carers.

We wanted to share this advice with you and offer some guidance and comfort during these very uncertain and frightening times.

Yesterday’s update from the Government announced measures that are far reaching and require those at risk to “take themselves out of society” for at least 12 weeks. The measures are known as SHIELDING.

What is shielding?

The strategy is known as shielding and the aim is to protect lives. Cases of coronavirus are rapidly increasing in the UK, which suggests it is circulating in the community and spreading from person to person. 

While everyone is being advised to keep their distance from other people to help stop the spread, some people with underlying health conditions need to take even more precautions to protect themselves.

What is the Government advice on shielding?

The Government did not specifically name Duchenne muscular dystrophy (DMD) in the list of those at risk. However, we believe that the best, and right course of action, is to assume that our community should follow the guidance relating to vulnerable people.

The guidance is as follows:

  1. Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or a new and continuous cough
  2. Do not leave your house
  3. Do not attend any gatherings. This includes gatherings of friends and families in private spaces for example family homes, weddings and religious services
  4. Do not go out for shopping, leisure or travel and, when arranging food or medication deliveries, these should be left at the door to minimise contact
  5. Keep in touch using remote technology such as phone, internet, and social media
  6. Do use telephone or online services to contact your GP or other essential services. 

You can read in full on the government's website: 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 

What is the Government defining as serious underlying health conditions?

On Sunday, the Government said it would be contacting 1.5 million people in England thought to be in the vulnerable groups. Around 40% of these will be 75 or older.

The Government did not specifically name Duchenne muscular dystrophy (DMD) in the list of those at risk, which we have put below. However some of our community fall into number 3 listed below, and those who are taking corticosteroids (Deflazacort or Prednisolone) MAY fall into number 5 listed below. Last week, the government website specifically mentioned corticosteroids tablets as an immunosuppression therapy. However this advice is no longer on the website. We’re not sure what number 4 means as, although DMD is a rare disease, it is not caused by errors of metabolism. 

We are trying to get clarity on all of these issues as soon as possible.


So we are recommending that all of our community should follow the guidelines on SHIELDING.

The groups defined as “extremely vulnerable” who will receive the letter are:

  1.  Solid organ transplant recipients
  2. People with specific cancers:
    1. people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
    2. people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
    3. people having immunotherapy or other continuing antibody treatments for cancer
    4. people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
    5. people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
  3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
  4. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
  5. People on immunosuppression therapies sufficient to significantly increase risk of infection.

Women who are pregnant with significant heart disease, congenital or acquired.

Receiving instructions from the NHS:

The Government has stated that if you HAVEN’T received a letter by Sunday 29th March, you should contact your hospital clinician or GP.

We understand that some families have already received letters and texts from their Neuromuscular Clinics telling them that their child is in the vulnerable group.

We are working hard to find out when and if all families will receive these letters.

Guidance for carers and family members:

The Government advice on carers and family support is clear: it says that visits from people who provide essential care, SHOULD continue. However carers and care workers must stay away if they have any symptoms of coronavirus (COVID-19). Please ensure they follow the guidance from the Government on home care provision. The most important thing to remember is that ALL people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival to your house and often whilst they are there.

Family members do NOT need to adopt the shielding strategy. However, you do need to follow guidance on social distancing. You should follow the below specific advice from the Government for a vulnerable person living in your household:

  1. Minimise as much as possible the time other family members spend in shared spaces such as kitchens, bathrooms and sitting areas, and keep shared spaces well ventilated.
  2. Aim to keep 2 metres (3 steps) away from people you live with and encourage them to sleep in a different bed where possible. If you can, you should use a separate bathroom from the rest of the household. Make sure you use separate towels from the other people in your house, both for drying themselves after bathing or showering and for hand-hygiene purposes.
  3. If you do share a toilet and bathroom with others, it is important that they are cleaned after use every time (for example, wiping surfaces you have come into contact with). Another tip is to consider drawing up a rota for bathing, with you using the facilities first.
  4. If you share a kitchen with others, avoid using it while they are present. If you can, you should take your meals back to your room to eat. If you have one, use a dishwasher to clean and dry the family’s used crockery and cutlery. If this is not possible, wash them using your usual washing up liquid and warm water and dry them thoroughly. If you are using your own utensils, remember to use a separate tea towel for drying these.

We understand that it will be difficult for some people to separate themselves from others at home. You should do your very best to follow this guidance and everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces.

If the rest of your household stringently follow advice on social distancing and minimise the risk of spreading the virus within the home by following the advice above, there is no need for them to also shield alongside you.

Support from Duchenne UK:

Duchenne UK staff are all working from home and we will do our very best to keep you informed with the most up-to-date and clear information on care and medical advice coming from the Government.

We understand that this a hugely stressful time for families, worried not just for the wellbeing of their family members with DMD, but also the impact that coronavirus will have on jobs, homes and mental health. There are many questions that our community and the wider population have about all of these issues. The Government will be seeking to answer these in the coming days.

We will be planning some online events to try and help you through this difficult time.

On Wednesday we will be hosting a webinar with Prof Francesco Muntoni from UCL/GOSH and would urge you to send us in your questions on the medical and clinical issues concerning coronavirus by emailing [email protected]

Please do also reserve your space by registering here: https://zoom.us/webinar/register/WN_4Vvs08FtQ1CwTGXdnwxsCA

These are challenging times but if we work together to protect our loved vulnerable ones and do all we can to prevent the spread of coronavirus, then we will emerge together as a community to fight to improve and extend the lives of everyone living with DMD.

Emily & Alex   

Cofounders of Duchenne UK

Published on 23 March 2020

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