During the COVID-19 outbreak in the UK, we provided regular updates to the Duchenne community. This page received over 40,000 unique page views from across the globe, providing the international Duchenne community with easy to understand, straightforward advice and information.
Vaccine update – children
The Government has recently announced that some children aged 12-17 will be offered the Pfizer/BioNTech COVID-19 vaccine. Since the vast majority of children recover well from COVID-19 infection, only a small number of children will be offered the vaccine. Exactly who will be included is not clear yet. but will be announced soon.
We know that many children who were classified as clinically extremely vulnerable at the start of the pandemic will not be offered the vaccine. This is because experts have been updating those groups as knowledge about COVID-19 and who is most vulnerable has improved.
We also know that some children who are immunosuppressed (taking drugs that stop the immune system working properly) will be eligible for vaccination. However, because there are different levels and types of immune suppression we don’t know yet if that will include young people living with Duchenne who are taking steroids.
We’ll let you know when more details are announced.
Vaccine update – adults
The UK has approved and has started using the Oxford/AstaZeneca and Pfizer/BioNTech vaccines for COVID-19. Before being provided to the general population, the vaccines are initially being offered to older people, those aged over 16 who have an increased risk of developing complications of COVID-19, and those who provide care for other individuals.
There’s information about who is eligible here.
Virus variants
Before Christmas 2020 it was announced that there is a new variant of the COVID-19 virus had been found in large numbers of cases, mainly in South-East England.
What is a viral variant?
When a virus infects a cell, the viral genome has to be copied many times. This process isn’t 100% accurate (it is very close!) so the new copies may have slight differences to the virus that originally infected the cell. The new genomes are formed into virus particles, and viruses with genetic differences are called variants.
During an epidemic, or pandemic, new virus variants are constantly arising. Most variants won’t be seen in large numbers, but sometimes a variation helps a virus grow faster and infect more people and that variant can become the most common virus in an outbreak.
The new variant – numbers, symptoms and vaccines
At this point, we don’t have very much solid information about the new variant. It appears to be spreading faster than the previous one and in late December 2020 it made up over 60% of the virus in some areas.
Some people have suggested that this is because it infects children more readily, but there is only limited evidence of this at the moment – it is difficult to say whether just children, or everybody is more readily infected.
Some variant viruses could cause slightly different symptoms in infected people; sometimes these might be more serious, sometimes less serious. The symptoms caused by this new variant are still being investigated, but there have been no announcements that the symptoms or their severity have changed.
Another concern is whether the vaccine will protect people from the new variant. Sometimes changes in the virus can let a virus escape the protection offered by a vaccine. At this point, there is no evidence to say that the vaccine will not protect people from the new variant, but there isn’t enough evidence to say for sure that it will. Work is being done in several labs and by pharmaceutical companies to develop that evidence.
Resources for talking to and supporting your children
Internationally renowned Paediatric Psychologist and long-term friend of Action Duchenne, Dr David Schonfeld has kindly shared some resources which we hope you find helpful.
The first film focuses on helping children cope with crisis and loss during COVID-19 for both parents and teachers.
This second film is shorter and was filmed by Dr David early on in the pandemic. You will find out how to explain COVID-19 and is particularly aimed at parents of young children.
You can find further printed and recorded resources on Dr David’s website, and be sure to watch his session at the Action Duchenne International Conference.
Previously published information
Below, you can find the information that we published throughout COVID-19.
As of 4 January 2021 all parts of the UK are in lockdown with schools in many areas closed for most pupils.
It is difficult for us to give you exact information or advice on what you can and cannot do at this time because the rules vary across the UK. Broadly speaking, you should stay at home unless you need to go out for one of the defined reasons (like going to a hospital appointment). You can find the current guidelines for England, Scotland, Northern Ireland and Wales and always talk to your Doctor if you have any concerns.
In England, people on the shielding list will be advised to start shielding again. In other areas those on the shielding list receive letters offering advice on what they should do during lockdown.
Shielding – who should shield?
The Association of British Neurologists (ABN) said (on 21 March) that high risk Duchenne and Becker patients should avoid any contact with people outside their household. This is called shielding.
The original definitions of who should shield were:
- reduced lung function (FVC<60%)
- using non-invasive ventilation
- having a weak cough
- cardiomyopathy symptoms
Some people living with Duchenne will be told by their clinic to shield themselves even if they do not fit the definitions of a high risk individual. If you receive advice from your clinic, please follow that advice.
The ABN’s advice says that taking steroids (doses above 20mg per day) is an additional risk factor which means people at moderate risk should act as if they were in the high risk group.
Should I be shielding?
The latest guidance from the Royal College of Physicians and Child Health has said that some people who were initially told to shield might be able to stop shielding.
The advice says that people who use non-invasive ventilation or a cough assist machine or those who have reduced lung function or cardiomyopathy should continue to shield.
Other families might want to stop shielding because they think this would be better for your child. Whether this can be recommended will depend on your individual situation and you should talk to your neuromuscular clinician on an individual basis. Those who are able to stop shielding will be removed from the Government’s shielding list and be able to attend school and follow rules for the general population.
It’s important to note that the Government’s current advice is that everybody must maintain steps to minimise social contact.
What should I do if I am shielding?
Those who are most at risk should shield themselves. The Government advice on shielding can be found here.
In England, you should expect to shield until at least the end of June, although it is likely this will be extended. In Scotland, people have been advised to shield until at least 31 July and in Wales, August 16th.
If you are shielding, you can exercise outside anywhere in the UK. You can go with someone you live with but should maintain strict social distancing – keeping at least 2 metres – from everybody else. If possible, you should try to choose times and areas that are quiet and remember to wash your hands for at least 20 seconds as soon as you get back home.
In Wales, you may also meet another local family if you are outside and maintain social distance – stay at least 2m away from others.
Latest advice for everybody else
Some people living with Duchenne are not in the highest risk group. Others may be able to stop shielding after discussing their individual situation with the clinician. These people should follow the Government’s advice for the general population as carefully as they possibly can.
We’re now seeing different advice given to people living in the devolved nations of the UK. You can find the current guidelines for England, Scotland, Northern Ireland and Wales.
Importantly, people living with Duchenne who are not in the high risk group above may still be vulnerable to serious symptoms if they are infected and they should follow the guidelines as stringently as possible.
A good explainer on social distancing and how it works can be found here
Will taking steroids increase my chance of infection?
At the moment, there is no evidence that taking steroids increases the risk of infection with the COVID-19 virus.
However, taking corticosteroids might be an additional risk factor for developing more serious symptoms if you are infected. Initial advice from the ABN said that people at moderate risk, who are taking steroids (doses above 20mg per day), should consider themselves in the high risk group.
There is some debate as to how immunosuppressed patients taking steroids are, so the guidance given by different consultants may vary. Action Duchenne is aware that some centres are promoting shielding while others are not.
As such, please follow the specific advice given to you by your consultant. If you have not been given specific advice then please use your best judgement or request specific advice.
At this time, refresh yourself with the advice on stress dosing with steroids and importantly, DO NOT stop taking steroids or alter the dose without consulting your specialist clinician. This process MUST be managed very carefully to prevent serious side effects.
Dr. Wong gives a fantastic overview of Steroids and COVID-19 in the most recent WDO webinar.
What are the symptoms of COVID-19?
The virus causes mild symptoms in most people. People have reported symptoms similar to a cold – fevers and a cough.
Some people, especially those with some underlying health issues are more likely to experience difficulty breathing which can be serious and may need support in hospital.
People living with Duchenne may experience more serious breathing issues, but there is as yet no evidence to confirm this.
You can find more information about symptoms on the NHS website.
If somebody living with Duchenne experiences these symptoms, always call NHS Direct on 111 or talk to your neuromuscular or respiratory consultant.
If somebody is admitted to hospital remember to take your red A&E book or have the Duchenne Emergency bookmarked in your phone to help treating clinicians.
What should I do?
The most important thing is to follow the guidance distributed by the Government on the NHS website. You can expect this advice to change – this is because understanding of the virus is constantly improving and the ongoing response will be tailored to the nature, number and location of cases in the UK.
Different advice is now being issued for people with underlying health conditions. People living with Duchenne should follow this advice rather than the advice given to the general public.
Similarly, if you are given Duchenne-specific advice by one of the consultants you or your child sees, you should follow this advice.
You should also think about what you might need if you are asked to isolate yourself and your family. This might include making sure you have a supply of any medicines you and your family need and any repeat prescriptions are organised – some companies may be able to deliver medicines if you cannot collect them.
It’s important to think about how this might affect carers and personal assistants, and consider forming an action plan with them before it is needed.
To minimise the chance of infection, if somebody living with Duchenne needs to attend a clinic appointment, wherever possible try not to take other siblings or any more people than are necessary for the appointment.
Need more information?
As the nature of the response changes, the government will keep updating their advice and we will update this page as required – including FAQs to the list below. If you have any questions, please email Neil or call us on 02072508240.
There have been 4 webinars from the World Duchenne Organisation (14 March and 21 March) and from PPMD (19 March and 27 March) Please remember that some of the advice in these webinars might not be applicable to the UK.
Frequently asked Questions
We’ve received lots of questions from the community about the Coronavirus outbreak currently affecting the UK and rest of the world. In this document we’ve tried to answer the questions we’ve received, and we’ll keep updating this document as required.
At the moment it’s difficult to answer these questions, or to say anything specific for people living with Duchenne because there is no conclusive evidence of what infection might mean for people living with the condition. That’s simply because there has been only a single reported case of COVID-19 in people living with Duchenne (the individual recovered from the infection following hospitalisation).
It’s important to remember that different countries are at different stages in the outbreak and you will see different advice being given to people in different countries and advice in the UK will change over time.
What is COVID-19?
An excellent interactive explainer on the New York Times can be found here.
Should we be self isolating now? How long should you self isolate for?
People living with Duchenne who are in a high risk category should be self isolating (called shielding) as above.
Remember that good hygiene – washing hands, avoiding touching the face and keeping surfaces clean is important and can minimise the spread of the infection.
The most important thing is to keep watching and follow the Government’s advice which is being updated regularly and will change over time as the outbreak evolves.
Also, remember that the outbreak is at a different stage in different countries and even different parts of different countries. This means that advice given out by people and Governments in other countries might not be applicable in the UK.
Can my carers/PAs still visit if I am shielding?
The World Muscle Society suggests that carers/PAs should be in-house if possible, and essential visiting caregivers should wear Personal Protective Equipment (or PPE) where it is not.
We know that PPE is currently in very short supply in the UK, but the Government are currently making arrangements to make equipment available. In the meantime, if you have access to suitable masks and gloves you should ask carers/PAs to wear them according to the manufacturers instructions.
How can we exercise if we are self isolating?
The current advice in the UK is that everybody should reduce social contact with others. If you are self isolating (or shielding) you can leave the house to exercise. You should maintain social distance from everybody else and keep to quieter areas where possible.
If you are not in the high risk group you should remember you should still follow the guidance on social distancing – keep at least 2 metres away from other people, and keep well away from anybody showing symptoms of infection. Avoid crowded areas and public transport.
What are my rights around work/ time off and sick pay if I need to keep my child at home?
The 2020 budget announced what benefits would be available for those unable to work because of coronavirus. Its guidance states:Statutory Sick Pay (SSP) will now be available for eligible individuals diagnosed with COVID-19 or those who are unable to work because they are self-isolating in line with Government advice. This is in addition to the change announced by the Prime Minister that SSP will be payable from day 1 instead of day 4 for affected individuals.People who are advised to self-isolate for COVID-19 will soon be able to obtain an alternative to the fit note to cover this by contacting NHS 111, rather than visiting a doctor. This can be used by employees where their employers require evidence. Further details will be confirmed shortly.
Is there a vaccine?
There is no vaccine against the COVID-19 Coronavirus. Scientists are currently working to develop a vaccine, but it will be some time before one is available.
Existing vaccines (for example pneumonia or flu vaccines) do not protect against the Coronavirus. However, they may prevent somebody getting a second infection at the same time as Coronavirus, which might be useful.
How will our older boys be treated in hospital if the beds are full?
The Government’s response is designed to spread the coronavirus outbreak over a longer period of time. By slowing the spread of the disease, they hope to keep the number of patients needing hospitalisation below the number of beds available.
Is it like flu in terms of how risky it is for people with Duchenne? Which is worse?
There is not enough evidence for us to answer this question yet. We know that the symptoms of COVID-19 are different to flu, but nobody is sure what COVID-19 will mean for somebody living with Duchenne. That’s because there have been no reports as yet of anybody living with Duchenne being infected with Coronavirus.
Should we continue to go to our routine hospital appointments?
This is something that families will need to consider on an individual level. Going to a hospital probably increases the risk of infection, and you should also consider things like how you get to hospital. It’s also important to consider the number of cases in your area and the importance of the appointment.
To reduce the risk of infection, some hospitals are now offering telephone and video consultations where possible. It’s important to say that different hospitals will start to use these systems at different times and not all appointments can be conducted remotely, so please check with your hospital before your appointment.
For some appointments it will be vital that you attend hospital, and for those appointments we would recommend that only people required for the appointment should go – so avoid taking siblings and other family members wherever possible.
If you do visit hospital, you should expect to be given a mask to wear. If it is needed, it should be provided by the hospital when you arrive.
Should we avoid our hospital as there has been a nurse confirmed with Coronavirus?
All hospitals will have plans in place to deal with this situation. If you’re worried, talk to the hospital or your consultant. As above, some hospitals are now offering remote appointments and more hospitals will be doing this over the coming weeks.
How about travel abroad to go to the clinical trial we are on? What will happen to the trials if we can’t get to the trial site?
If you are thinking about travelling abroad you should look at the guidance given by the UK Foriegn Office. This lists countries around the world where travel is advised against. Travel might be made more difficult by restrictions on flights and other transportation made by Governments and companies.
If you are taking place in a clinical trial abroad, you should talk to the clinical trial site or company if you foresee any difficulties. Trials will have protocols in place about missed clinic visits and the centre will be able to advise on these.
How vulnerable are carriers and manifesting carriers?
This is an incredibly difficult question to answer because all manifesting carriers experience different symptoms at different ages. If you are concerned, talk to your clinician, who will be able to offer advice.
If I have had Coronavirus, will I have an immunity and can I continue to mix with people who don’t have it without infecting them?
Once people have had the infection, their immune system should prevent them being infected a second time. In terms of mixing with others, the key thing is to follow the Government advice on what to do when you have symptoms. This is likely to include staying away from everybody else for a certain amount of time to prevent you from passing on the virus to others and will slow down the spread of the virus.
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