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.

 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 is still relatively limited and will be updated as more becomes available.

Recent research, published October 2020, indicates that people with Down Syndrome are at higher risk  of severe outcomes from COVID-19. This research has been published in the British Medical Journal  and Annals of Internal Medicine and 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.

This  information has 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 will have a significant impact on people’s lives and those affected, their families and carers should 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.

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 5.11.20

The RCPCH annual meeting which was due to be held 28-30 April 2020 has been postponed due to COVID -19

Please check back here or www.rcpch.ac.uk for future plans

The RCPCH annual meeting which was due to be held 28-30 April 2020 has been postponed due to COVID -19.

The session that that DSMIG  was to run jointly with  the British Association for  Community Child Health and the British Paediatric Respiratory Society , focussing on respiratory issues in Down Syndrome will there for not be going ahead on 29th April 2020.

We hope that this session will be rearranged as part of a  future RCPCH meeting.Please check back here or  www.rcpch.ac.uk for future plans