Patient care & support

Updated school/college guidance for children with DMD, Nov 2020

We have been given this update from North Star clinicians to address the concerns of the community following the new COVID-19 lockdown and confusion regarding advice for extremely vulnerable. We highly recommend reading this document.

Download document as pdf here.

Updated School/College guidance – 6th November 2020

The government is still advising that most children and young people should continue to attend school/college as per return to school guidance in September. This guidance includes children and young people with a neuromuscular condition. With the proposed new national lockdown commencing on November 5th, we understand there maybe anxiety in relation to continued attendance at school or college.

The new government guidance no longer includes the shielding of individuals, as it did during the April lockdown.  The current lockdown is to try and slow down the spread of the virus whilst protecting the vulnerable, predominantly elderly population. Only a minority of patients in the ‘extremely vulnerable’ group have been advised to shield during the current lockdown. These are patients who are severely compromised or undergoing cancer treatment. None of these criteria apply to our cohort of neuromuscular patients. However, we recognise that there may be specific circumstances that change the balance of risks for individual families. This may mean that after discussion with your clinical team, there is agreement that your child should not attend school at the current time.

Over the last few months, you will have read, seen, listened to and experienced a great deal regarding this virus. It has become increasingly clear that children and young people, even those with underlying health conditions, are at very low risk of  severe Covid19 infections but have suffered as a result of not being able to participate in their normal activities, especially in relation to attending school or college.

The government guidance does change frequently in relation to the pressures on health care provision and the economy as well as increasing awareness of the way in which infections occur and may be managed.  It is clear that the virus is still with us and not likely to disappear soon. There have been local tier restrictions and now a national lockdown with the likelihood of further local or national restrictions in the coming months. This obviously creates a lot of questions and further worry.

We will endeavour to update the advice we provide in light of the changing picture.

As you know, all schools have been issued with guidance and have developed  plans to put these into effect. Schools have implemented specific and potentially different strategies, depending on the structure, environment and size of school.

It is therefore important to liaise with school staff directly to ensure that you are happy with the plan in place for your child.

The advice below, issued in September is still accurate and should be followed


On a personal level:

The Public Health England FAQ page provides good general advice and is worth checking for many queries:


General Questions

  1. Is my child more or less risk of developing coronavirus than any other child.

Children do get coronavirus, but seem to be significantly less affected by it. During the end of the last school year out of a million children at school, less than 70 tested positive for coronavirus (PHE paper Aug23rd). During the peak of the pandemic – March to June 2020 – very small numbers of children, compared to adults, were admitted to hospital and most of these, about 80%, did not require any more than a general ward admission and went home within 72 hours (RCPCH data).   The vast majority of these children had no underlying conditions

It is reassuring that having analysed data from global databases, national networks and disease registries, it appears that children and young people with an underlying neuromuscular condition do not have a particularly increased risk of developing a severe Covid 19 infection

There is, however, evidence that the restrictions placed on children during the shielding period have not been without cost to their emotional and physical well-being and therefore it is clear that the balance of risks is now in favour of the majority of children, returning to more normal activities including school.


Is it safe for my child to go to school?

Yes. Although some children do get coronavirus, the evidence suggests that they do not transmit it as much as adults and they are not affected by it as much as adults. Age is the dominant risk factor. Unfortunately this means that teachers are more likely to catch coronavirus and pass it on amongst themselves. Parents and carers will also be at risk at the school gate. Therefore most schools will have put in plans to mitigate this risk such as staggered start and finish times for schools and reduced movement of staff and pupils between classes.

This means that everyone must continue to follow the general guidance when out of school or going to school:

Where possible, it would be best to avoid grandparents from collecting children from school as they are more at risk from having severe symptoms if they catch Covid19.


  1. How can I protect my child on the way to and from school?

Generally speaking “active transport” such as walking or cycling is recommended, although this may be challenging depending on your child’s exercise tolerance. If your child car shares with another family or uses public transport such as a bus, train or taxi, if they are able, they should wear a mask.

Where the local authority provides school transport then appropriate risk assessments and guidance should be put in place.

Physiotherapy/Personal care

  1. Will my child still be able to do their physiotherapy/Physical management programme at school?

We strongly recommend that where a child was doing physiotherapy at school before lockdown this should be continued. The government has issued guidelines to support this (PHE guidance).

In addition we would recommend for caregivers and teachers to wear a mask if social distancing cannot be adhered to for example during close one to one support. Your child should also wear a mask in these circumstances if he/she is older than 12 years.

When personal care activities are taking place it is good practice for staff to wear gloves, disposal apron, mask and to adhere to stringent hygiene practice.


  1. I thought teachers had been told they weren’t allowed to wear masks?

Currently, teachers in England have been advised not to wear masks when teaching as it inhibits communication. This does not prevent them from wearing masks when in close contact with children if it is felt appropriate.

In addition we would recommend for caregivers , teachers, and support staff  to wear a mask if social distancing cannot be adhered to  for example during 1:1 support in lessons, help with personal care, hoisting. The policy on the wearing of face masks by teaching staff may vary according to local school guidelines. So it is important to find out your childs local school policy.

Head teachers may recommend that teachers, pupils and visitors wear face coverings in communal areas of the educational setting. This will also vary depending on the schools local guideline.

Your child should also wear a mask in these circumstances if he/she is older than 12 years.

  1. Why are young children advised not to wear masks?

Communication is important at school and seeing the whole face is important for communication.  Outside of schools, the current English guidance is that children under the age of 11 do not need to wear masks, but over the age of 11 they do. The advice is different in different parts of the UK, and WHO offers different advice. Therefore this guidance may change. In smaller preschool children, ie under the age of 5, masks are not recommended as they may cause distress to the child, the children may touch the masks frequently increasing risk of transmission and it maybe a choking risk.


  1. What do I do if my child gets a new cough or fever?

Isolate, inform the school and organise a Covid swab.

https://www.gov.uk/get-coronavirus-test – click on the green Start Now button half way down the page and put in your child’s name when it asks for your name on the next page. When you have completed the survey it will advise you of the nearest testing centre and available times.

This website tells you what is involved in Covid19 swabbing:



  1. My child gets coughs easily do they need to get a Covid swab every time they get a new cough?

Children in general get between 5-15 viral infections a year. Most are seasonal viruses such as RSV or influenza, or the common cold, often caused by rhinovirus. We do not know which cough is caused by Covid19. Covid19 causes particular problems for certain people and we do not want to put them at increased risk. It is therefore important for you and your community that everyone who gets a new cough self isolates and gets a Covid19 swab at this time.

  1. What happens if someone in my child’s class or year group bubble is positive for Covid?

Don’t worry.. The school will issue advice that will likely involve self-isolating for a period of time. The specific guidance is likely to vary from school to school

Unfortunately this is going to be a very disruptive time to anybody who has children and we hope employers will be sympathetic. It is likely that in large schools these episodes may occur more than once.

Testing, Immunity & Vaccines

  1. I had symptoms of Covid19 when testing wasn’t available. Why can’t I be tested for Covid19 antibodies?

Unfortunately Covid19 antibody testing isn’t widely available, although it is increasing. However, we still don’t know enough about the virus to truly know how useful this test is. For example we don’t know if a negative test means that you definitely haven’t had the virus but have undetectable immunity, or if a positive test means you definitely can’t be re infected

  1. Why can’t NHS staff/teachers/pupils have regular swab tests so my child is protected?

The swab only tells us if the staff member has Covid19 at that particular time point. Currently the swab test takes on average about 24 hours to come back. So for this to work the staff member would have to isolate form the point the swab is taken until they finish their run of shifts. This is impractical. Also the test may be falsely negative or positive in a small percentage of cases, providing false reassurance.

  1. Why is it taking so long to develop a vaccine when we have a new influenza vaccine every year?

The influenza vaccine is “tweaked” slightly every year depending on the strain of ‘flu that is around that season and so does not need new development or new extensive testing.

  1. How come they are able to develop a new vaccine for Covid19 so quickly? Will it be safe? Why can’t we have the Russian vaccine?

Immunisation development has advanced over the years. We now have new technology that enables us to know the genetic code and structure of this virus, which then allows us to make best guess approaches at which bits of the virus we need to use to produce the best immune response. We have developed different ways of carrying these bits into the body to produce the best response and we can test them out in the labs in new ways before doing animal trials. We can take lessons from previous coronavirus outbreaks (SARS1 and MERS) when vaccine development started that will apply to Covid19. As we know these methods to be effective and safe, it has allowed quick development of multiple trial vaccines that have then passed into safety trials. Unfortunately phase 2 and 3 trials will take longer and involve lots of people before the vaccine can be ensured to be safe for the general population. So it is unlikely there will be a vaccine available in the UK until next year. Scientists in the UK worry about the safety and efficacy of the Russian and other vaccines as they have been developed so quickly.


  1. What about this inflammatory disease?

We still don’t know much about this other than it seems to be a rare syndrome that may be a delayed reaction to having had Coronavirus. It has only affected a small number of children and not all of them have required treatment. There appears to be no specific risk factors, but the treatment (steroids, and if required, immunoglobulins) appears to be effective.

  1. Are there any treatments we can take if we think we have Covid19?

No. Like most viruses, Covid19 is managed mainly with supportive therapies: maintaining good fluid intake and antipyretics like paracetamol. The evidence so far for antivirals and hydroxychloroquine has been disappointing. Dexamethasone, a steroid, has been shown to reduce the time people need admission to hospital, but only in those who were unwell enough to need oxygen. It didn’t make a significant difference to those who didn’t need to be admitted.


  1. What else can I do to protect my child and my family as lockdown eases?

The general advice stands for everyone:

Some schools are recommending that children wear freshly washed uniform each day. If this is the case then wash the clothes on the highest temperature the clothing recommends.

If you work in a people facing role, if possible wash and change your work clothes either at work or before you collect your child from school. As a minimum, clean your hands as you leave work.

We hope this advice is useful.





Published on 6 November 2020

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