COVID-19 Guidance - FAQs & Webinar Series

Looking for Dravet-specific advice on coping with COVID-19? This resource provides the answers to Frequently Asked Questions, developed in consultation with our Medical Advisory Board, chaired by Professor Helen Cross, and links to our ongoing webinar series. 

As with any general medical guidance it is important to consult with your clinician before starting, stopping or changing individual treatment plans. This guidance is correct to the best of our knowledge at the time of publication (Friday 26th June). However, we are mindful this is a rapidly evolving context and guidance may change as more information becomes available. 

Q1: Are people with Dravet Syndrome at high risk from COVID-19?

Dravet Syndrome is a spectrum condition, meaning the risks from COVID-19 will vary depending on a person’s overall health.  Whilst fever sensitive epilepsies have been assessed as being low risk by the Association of British Neurologists (26.03.20), people with Dravet Syndrome have other health problems known as comorbidities.  People with Dravet Syndrome may be at higher risk if their comorbidities mean they have compromise of the respiratory function such as recurrent chest infections, scoliosis or swallowing difficulties in the absence of a feeding tubes.  A determination of low, medium or high risk should be clinician led.  Guidance from the Association of British Neurologists on the risk from COVID-19 for people with neurological conditions can be found here.  Guidance from the Government on people who are at very high risk of severe illness from COVID-19 and classified as extremely vulnerable can be found here

Watch our 'Dravet Syndrome in the COVID-19 pandemic' webinar with Professor Helen Cross

On Monday 30th March, Professor Cross, a globally-recognised authority on Dravet Syndrome and Chair of our Medical Advisory, presented a webinar on the implications of COVID-19 for Dravet individuals.

Watch the video

Q2: What measures should be taken to protect people with Dravet Syndrome from COVID-19?

Advice on the measures needed to protect against infection from COVID-19 is being regularly updated.  The two main sources of information are the NHS website and the Government’s website.  Currently (14.07.20) everyone is being told to socially distance by:

In guidance issued on 6 July, the Government said the majority of children currently considered extremely clinical vulnerable to COVID-19 will be able to be removed from the shielded patient list. However, children will only be removed from the shielded patient list by their GP or specialist doctor, following consultation with the child and their family.

We know some families have been asked by employers to return to work, despite advice that they should continue shielding their child/adult with Dravet Syndrome. If you're in this situation and are looking for guidance, we recommend seeking advice from ACAS (the Advisory, Conciliation and Arbitration Service). You can contact ACAS via their website or by calling their helpline: 0300 123 1100.

From Saturday 1 August the official guidance on shielding is being relaxed so clinically extremely vulnerable people will no longer be advised to shield. Public Health England has published a summary of the up-to-date guidance for people who have been shielding setting out the recent changes, including that from 1 August:  

Food and medicine box deliveries organised through the National Shielding Service will stop from 1 August. The last boxes of basic supplies will be sent out by 31 July 2020 for which new registrations will close on 17 July. People with priority access to supermarket deliveries will be able to keep these priority slots after 17 July. There is more information about this on the Government website.

As Dravet Syndrome is a spectrum condition, the risks from COVID-19 infection will vary according to each individual. If you have any worries or concerns about the end of shielding you should raise these with your medical team. 

Q3: Now lockdown restrictions are easing, is it safe for carer's to come into the home and/or for my Dravet child/adult to return to respite care?

If your child/adult is NOT on the clinically vulnerable list (confirmed by a text and letter from your GP) and provided carers/respite follow the latest government guidance (see below), the risks of COVID-19 infection remain low, so if families feel their child and the family as whole would benefit from a return to care or respite, they should feel comfortable in doing so.

Information for carers:

Carers should make sure they know which of their clients are on this list before your duties. The government has issued guidance for residential care, supported living and home-care, which can be found here. If you're a carer, your organisation should have a list of all clients who are shielded and in the clinically extremely vulnerable group, so you do not need to make an assessment yourself. Helpful information can also be found on the Carers UK website.

Watch our 'Family Wellness During COVID-19' webinar with Neil Williamson

On 25th April 2020, Neil Williamson, who is an Epilepsy Nurse Specialist and member of the DSUK Medical Advisory Board, hosted a webinar for Dravet families, which focused on family wellness through COVID-19, with practical tips and Dravet-specific advice for coping with the virus outbreak.

Watch the video

Q4: Are there any issues children/adults with Dravet Syndrome needing to wear a mask?

There should be no contraindication for individual with Dravet Syndrome to wearing a mask. Should a convulsive seizure occur it is advised that someone removes the mask with caution to ensure optimal airway function. 

The US Centers for Disease Control and Prevention (CDC) recommends that ‘cloth face coverings should not be placed on young children younger than 2 years of age, anyone who has trouble breathing, or is unconscious, incapacitated or otherwise unable to remove the cover without assistance.

However, we understand that mask wearing may not be tolerated even in older children with Dravet Syndrome due to sensory and other issues. Parents/carers may need to be prepared to explain this in situations where mask-wearing is requested. For public transport, exemptions for the use of face coverings apply to those with certain health conditions, disabled people and children under the age of 11 (find out more here). Some organisations are offering 'face-covering exempt' lanyards (find out more here). 

Q5: Is it safe for my child/adult with Dravet Syndrome to return to school/care settings?

Because Dravet Syndrome is a spectrum condition, the extent to which each individual child/adult is at risk of COVID-19 infection will vary (see Q1 above). In new guidance issued on 6 July, the Government says that the majority of children currently considered extremely clinical vulnerable to COVID-19 will be able to be removed from the shielded patient list, and return to school (when the rest of their class goes back). 

Children will only be removed from the shielded patient list by their GP or specialist doctor, following consultation with the child and their family.

In accordance with the guidance on self-isolation, children with symptoms (or who live with anyone with symptoms) of COVID-19 should stay at home.

If you feel it would be too high risk to send your child to school because they, or someone else in your family, is at particularly high risk, there is no requirement to send your child in before the summer holidays. 

If your child is not within the category that requires a formal risk assessment the school may agree to conduct one and the guidance on implementing protective measures in education and childcare settings states that:

Ultimately, the decision to return to school should to take into account the overall needs of not only the young person with Dravet Syndrome, but also the needs of your family as a whole. There are many factors to consider including health-related needs, social care and, importantly, mental well-being. Take time to discuss options with your medical and social care team, and with other members of your family, before ultimately making the decision that feels the right one for you, your Dravet child/adult and other family members, such as siblings.

For further detailed information on SEN provision during COVID-19, visit the IPSEA website, which has lots of helpful guidance.

Q6: My child/adult needs emergency care that I would normally go to A&E for.  Should I still go to A&E if it is not COVID-19 related?

If a child/adult with Dravet Syndrome needs A&E then they should go to A&E and not avoid or delay due to COVID-19. Hospitals are still fully open and responding to all emergency situations, despite the COVID-19 situation, so it is important to follow your normal escalation procedure.

Children or adults with complex health needs and disabilities, such as Dravet Syndrome, may have their ‘own normals’. If as a parent or carer you feel your child is sicker than they normally are, are getting worse, or they have any new symptoms, trust your instincts and seek medical advice urgently. The Royal College of Paediatrics and Child Health (RCPCH) has some helpful guidance on seeking help - click here to view.

Q7: I’ve heard that the Coronavirus Act 2020 could lead to my local council suspending its social care duties for adults with disabilities. Should I be concerned about the impact this will have regarding social care provision for my son/daughter with Dravet Syndrome?

So far, there are very few examples of local authorities taking the decision to ease social care duties for adults with disabilities, as a result of the new Coronavirus Act.

Government guidance states that a local authority should only take a decision to begin easing Care Act duties if there is no alternative. In other words, a 'tipping point’ needs to be reached, where the workforce is significantly depleted, or demand on social care increased, to an extent that it is no longer reasonably practicable for the local authority to comply with its duties or to do so would lead to urgent or acute needs going unmet, risking life.

If you are concerned about any changes, do speak to your social care team. Any decision to reduce or suspend care cannot be made without approval by the Director of Social Services and Department of Health, and it must be reviewed every two weeks.

For more insights from Fiona Scolding, a leading family lawyer, please do check out our ‘Focus on Adults’ webinar; the relevant section starts at around 44 minutes into the webinar: A more detailed presentation on the Coronavirus Act and its impact on adult social care is also available. Click here to view:

Watch our webinar - 'COVID-19: Focus on Adults with Dravet Syndrome'

On Saturday 25th April, Professor Sanjay Sisodiya, an adult neurologist, and Fiona QC, a leading family lawyer, jointly presented a webinar focused on meeting the medical needs and safeguarding the rights of Dravet adults.

Watch the video

Q8: What treatment plans will people with Dravet Syndrome need for COVID-19?

Any treatment plans for people with Dravet Syndrome and COVID-19 should be decided in consultation with clinicians, taking into account the latest information from reputable bodies.  As people with Dravet Syndrome have fever sensitive seizures, the main issue is the likelihood of fever reported to be present for 65% to 80% of all people infected with COVID-19.  We would expect treatment plans to be as follows: 

Q9: Is it safe to give ibuprofen or other NSAIDs to people with Dravet Syndrome and COVID-19?

Ibuprofen, naproxen sodium and other non-steroidal anti-inflammatory drugs (NSAIDs) can relieve pain and fever; they also reduce inflammation. Another drug, paracetamol (also known as acetaminophen), controls pain and fever but does not affect inflammation. Although there have been concerns circulating about a risk of more severe infection with nonsteroidal anti-inflammatory drugs there is no definitive evidence to support this.

If your chid/adult has a fever or body aches, you can take one of these drugs for relief, as long as you follow the dose instructions.

Q10: Will the situation with COVID-19 lead to shortages of anti-seizure medicines?

Epilepsy Action and the Epilepsy Society both have helpful guidance on the availability of anti-seizure medicines.  According to Epilepsy Action (27.03.20): “The Department of Health and Social Care is working with drug companies to minimise any impact of coronavirus on drug supplies. Drug companies have already built up stockpiles of medicines in preparation for Brexit and have now been asked to maintain this level of stockpiling. This should mean medicines will continue to be available, even if there are temporary disruptions to the supply chain. We don’t currently know of any coronavirus-related drug shortages.  If we find out about any shortages of epilepsy medicines, we will post these on our Drugwatch webpage.”

Further information:

For more information about the impact of coronavirus on people with epilepsy and their families, visit the ILAE (International League Against Epilepsy) COVID-19 resources.

Please check for the latest government guidance on social distancing. More information is available on coronavirus here

For more information about our Medical Advisory Board, click here.

We will continue to monitor developments closely with the support of our Medical Advisory Board and through information provided by Public Health England and bring you further updates on a regular basis. In the meantime, please keep safe, keep well and stay at home. 

Are you a Healthcare Professional looking for information on Dravet Syndrome?

Visit our healthcare professional section for more resources, including information on common drug-drug interactions for Dravet Syndrome and COVID-19.

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