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 a a newly identified disease, caused by a type of coronavirus not previously seen in humans. It primarily affects the respiratory system.

There is no evidence at the moment of people who have Down syndrome being at particular risk of this coronavirus , though of course people who have Down syndrome may be more at risk from infections generally and respiratory infections in particular.However there is evidence to suggest it may pose a greater risk to those with other chronic health conditions, including pre-existing respiratory conditions, heart disease, diabetes, and immunodeficiency. A number of children and adults who have Down syndrome will fall within these higher risk groups.
Those at higher risk may be advised to “shield “ or socially isolate to minimise risk of infection. COVID -19 shielding advice for children and young people has been written by the RCPCH. This describes 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 follow  advice on avoiding exposure to infection as for the general population which  includes handwashing, use of face masks, avoiding exposure to those known to be affected and social distancing . Details on NHS website

It is 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 .

The T21 Research Society is undertaking an international study looking at the effects of COVID-19 in people who have Down syndrome.  DSMIG is supporting this study.

The study is collating data from across the globe and aim to update the results every 4-8 weeks. Please follow the link https://www.t21rs.com/covid-19/  for updates

The three main clinical research questions are:

1.      Whether individuals with Down syndrome are more vulnerable to severe outcomes because of co-occurring conditions

2.      Whether those with Down syndrome are at an increased risk for complications arising in the context of SARS-CoV-2 infection

3.      Whether there are atypical responses to treatments of COVID-19 among individuals with Down syndrome, including their response to future vaccines?

 

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.

 

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 3.7.20

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