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. 

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 (27.03.20) everyone is being told to socially distance by:

Shielding is the most effective form of infection prevention for all people with Dravet Syndrome, where practically possible.  Government guidance on shielding for people who are extremely vulnerable and at very high risk of severe illness from COVID-19 can be found here. If you are unsure whether or not a person with Dravet Syndrome is extremely vulnerable please consult with your clinician. The government has also issued guidance for residential care, supported living and home-care which can be found here. Helpful information for carers can 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

Q3: How do I register my child/adult with Dravet Syndrome on the 'extremely vulnerable' / 'shielded patient' list and how long does it take to receive a response?

Dravet Syndrome is a spectrum condition, meaning the risks from COVID-19 will vary depending on a person’s overall health (see Q1 above). If you consider your child/adult to be extremely vulnerable and have not received a communication from the NHS confirming they are on the 'shielded patient' list, the Government has a scheme to register those who need extra support. Click here to complete the online registration form.This system will connect you with a Local Support System to make sure those individuals self-isolating at home and who are without a support network of friends and family will receive basic groceries. Community pharmacies will support those who need help getting their medicines delivered.

Please be aware that the process may take several weeks to complete. Typically, we've heard that it may take up to two weeks to receive a text message confirming registration from your GP and another two weeks to receive the government letter. In addition, the process varies depending on which UK region you are living in. Our partners at the Genetic Alliance have compiled helpful regional information. Click on the links to find out details for EnglandWalesScotland and Northern Ireland

Q4: 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.

Q5: 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?

A: 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

Q6: 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: 

Q7: Is it safe to give ibuprofen to people with Dravet Syndrome and COVID-19?

We are aware that there have been some case reports suggesting that ibuprofen could aggravate the symptoms related to coronavirus infection. The World Health Organisation and the European Medicines Agency have both recently stated there is, as yet (23.03.20), no strong evidence establishing a link between ibuprofen and worsening of COVID-19. It is reasonable for patients affected by COVID-19 to primarily take paracetamol to control fever.  As always, treatment should be decided in consultation with your clinician taking into account the latest information from reputable bodies.  For further helpful information regarding ibuprofen and managing fever in children, please visit the Royal College of Paediatrics and Child Health (RCPCH) website here.

Q8: 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:

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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