Covid-19 and Down Syndrome

Information about the new Coronavirus pandemic , how it may affect people who have Down syndrome and resources for health professionals and families is now available.

The UK Joint Committee on Vaccination and Immunisation (JCVI) have now recommended  that vulnerable young people at greatest risk from Coronavirus can benefit from COVID-19 vaccines. Young people with Down syndrome aged 12 and over are included in this recommendation, alongside others with immunosuppression, multiple or severe neurodisabilities.

The Pfizer/BioNTech vaccine has been approved by the MHRA as safe and effective for those over 12.

Details about how this recommendation will be implemented by the NHS are awaited.

There is no current evidence that the new UK variant of COVID-19 strain is worse than the previous COVID-19 strain, in terms of severity of illness or risk of death. However, it does spread much more easily, and therefore it is really important to take strict precautions to prevent the spread of the virus. This includes maintaining strict hand hygiene, social distancing and wearing a mask.

There is no evidence to suggest that the vaccine poses any additional concerns for people with Down syndrome compared with the general population.

COVID-19 is an infectious disease  caused by a type of coronavirus (SARS-CoV-2) not previously seen in humans, primarily affecting the respiratory system. As it is only recently identified we are still learning about COVID – 19. We have included  here information about  COVID-19 and how it relates to people with Down syndrome. The information will be updated as more becomes available.

Research, published October 2020, indicates that people with Down Syndrome are at higher risk of severe outcomes from COVID-19. Research published in the British Medical Journal  and Annals of Internal Medicine, found increased risk of hospitalisation and serious illness in adults (aged 18 and above) with Down syndrome. There were similar findings in a study published  in Genetics in Medicine .The increased risk is age related, and mainly relates to older adults and those with other medical conditions that also increase the risk from COVID-19. Research published July 2021 in the British Medical Journal also showed increased risks for people with Down syndrome.

This  information led to the U.K. Department of Health and Social Care issuing new guidance on 4th November 2020 to include adults with Down syndrome on the list of those considered clinically extremely vulnerable to COVID-19. This advice had a significant impact on people’s lives and those affected, their families and carers were advised to discuss the implications of this with their GP or other health care professional, taking into account their individual health needs and personal circumstances.

The Trisomy 21 Research Society  has published findings of an international study which has similar findings but does also include children. The data on children and young people is still  limited, but suggests that children with Down syndrome are not at the same increased risk as older adults, and should not be included in the clinically extremely vulnerable list , except for a very small number who may be included because of  an associated medical condition, (essentially only those on immunosuppressive drugs or severe immunodeficiency). COVID -19 shielding advice for children and young people has been written by the RCPCH describing which children should be included in the highest risk groups.

The majority of children and young people with Down syndrome will not be in those high risk groups and should still be able to attend school or college,  following government advice on use of face masks, handwashing, avoiding exposure to those known to be affected and social distancing.  Details on NHS website.

It is important for people who have Down syndrome and their families to understand the implications of the government advice. This is available in an easy read format on the Down’s Syndrome Association, Down’s Syndrome Scotland  and Down Syndrome Ireland websites.

People with Down syndrome may be at greater risk of other infections aside from COVID-19. It is therefore also important to maximise other measures recommended to minimise the risk of infections including routine and additional immunisations, and treatment of other medical problems that may predispose to infection.

There is no current evidence that the new UK variant of COVID-19 strain is worse than the previous COVID-19 strain, in terms of severity of illness or risk of death. However, it does spread much more easily, and therefore it is really important to take strict precautions to prevent the spread of the virus. This includes maintaining strict hand hygiene, social distancing and wearing a mask.

As adults with Down syndrome are included in the list of people classed as clinically extremely vulnerable, they should be offered Covid 19 vaccine according to the prioritisation set out by the UK Joint Committee on Vaccination and Immunisations.

Further information can be found in the Immunisation against infectious disease Green book Chapter 14a and the RCPCH Coronavirus vaccination programme statement.

As the Covid-19 pandemic develops we will develop a greater understanding of how the disease affects different groups of people, including those with other health conditions and for those who have Down syndrome. We will endeavour to keep health professional colleagues working with people who have Down syndrome with information as it becomes available.

Below we have collected some resources that we feel are useful.

General advice

Up to date advice is available via the NHS website.

Advice also available via UK Government website.

Advice for Health professionals

Comprehensive advice has been prepared by the Royal College of Paediatrics and Child Health COVID-19 guidance for paediatric services.

Resources for Community Paediatricians are available on the British Association for Community Child Health website.

NHS England has produced a Clinical guide for front line staff to support the management of patients with a learning disability, autism or both during the coronavirus pandemic – relevant to all clinical specialities.

Article on Guidance for the Treatment and Management of COVID-19 Among People with Intellectual Disabilities

Advice for parents, carers and people who have Down syndrome

There is useful information on the website of the Down’s Syndrome Association ( DSA) which includes an easy read guide about coronavirus , and advice on hand washing.

There are two recent  DSA Journal articles Preventing infection in children with Down’s syndrome and Recognition of Serious Illness in Children with Down’s syndrome.

Advice on infections is also included in the new 2020 version of the Personal Child Health Record DS insert on pages 9 and 16.

Similar useful information is also available on Down Syndrome Ireland website

General information about Coronavirus for parents can be found here

Wide ranging advice, with links to national and regional resources , and  helplines has been compiled by the Disabled Children’s Partnership

Up-to-date Government guidance and information for practitioners and parents and carers on issues related to education, health and social care to help support  disabled children during the Coronavirus outbreak has been collated by the Council For Disabled Children

Include Me Too have developed COVID 19 Hospital Communication Passport for disabled children, young people & adults .Providing vital information to support their safety, dignity, access, communication, sensory, physical & personal care needs.

If you have any further suggestions of information about COVID-19 or useful resources we should put on the website please email info@dsmig.org.uk

Last update 19.7.21