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.
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.
There is no evidence to suggest that the vaccine poses any additional concerns for people with Down syndrome compared with the general population, and all eligible adults should be offered and encouraged to have the vaccine.
There is very limited evidence of the safety or efficacy of the vaccine in children, and it should not currently be offered. It may be considered on an individual/off licence basis for older children/young people (over 12 years) who are extremely vulnerable and at high risk of exposure. 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
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 email@example.com
Last update 28.1.21