Next DSMIG meeting Thursday 17th June 2021 to be held jointly with BACD and BSPGHAN at the RCPCH online conference

Register now

The next DSMIG meeting will be held as part of the RCPCH online conference which has now been rescheduled for June 2021.

This year there will be a joint meeting with DSMIG, BSPGHAN and BACD with a general theme of gastrointestinal issues in children who have Down Syndrome and also parent perspectives of having a child with disability during COVID. I am sure a lot of information and experiences can be generalised to other children that we manage in our clinical practice.

The date of the meeting is Thursday 17th June 2021 15:30-18.00 and details for registration will be on the college website.

https://www.rcpch.ac.uk/news-events/rcpch-conference

Please see the attached RCPCH Flyer June 2021 Please do share this flyer within your local networks.

World Down Syndrome Day (WDSD) 2021

DSMIG supports World Down Syndrome Day (WDSD) 2021

WDSD is a global awareness day recognised since 2012 by the UN, which takes place on 21 March every year.

On WDSD people who have Down syndrome, their families, friends and advocates, work to raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people who have Down syndrome play a vital role in lives and communities.

The theme for WDSD 2021 is ‘CONNECT’ – the focus will be about improving connections to ensure that all people who have Down syndrome can CONNECT and participate on an equal basis with others.

The COVID-19 pandemic has forced many of us, individuals and organisations, to adapt the ways that we connect and communicate with each other.

It is important to find new ways of connecting that are accessible to everyone.

Find out how you can get involved here: World Down Syndrome Day | Down Syndrome International (ds-int.org)

Medical vulnerability of individuals with down syndrome to severe COVID-19 – data from the trisomy 21 research society and the UK ISARIC4C survey published by The Lancet

International study finds increased COVID-19 mortality among adults with Down syndrome

Research by the Trisomy 21 Research society (T21RS) found increased COVID-19 mortality among adults with Down Syndrome compared to the general population, supporting the need to prioritize vaccination for those with the genetic disorder.

The results of the study were published this week in The Lancet’s EClinical Medicine.

Please note, we do not yet have the evidence related to children less than 16.

 

NEXT DSMIG meeting Thursday 17th June 2021 to be held jointly with BACD and BSPGHAN at the RCPCH online conference

The next DSMIG meeting will be held as part of the RCPCH online conference which has now been rescheduled for June 2021.

This year there will be a joint meeting with DSMIG, BSPGHAN and BACD with a general theme of gastrointestinal issues in children who have Down Syndrome and also parent perspectives of having a child with disability during COVID. I am sure a lot of information and experiences can be generalised to other children that we manage in our clinical practice.

The date of the meeting is Thursday 17th June 2021 15:30-18.00 and details for registration will be on the college website.

DSMIG are welcoming abstracts for poster or oral presentation and I would be grateful if you or your colleagues (including multidisciplinary team members) would consider submitting these. Please do share this flyer within your local networks.

Abstracts submission deadline is 4 weeks away on 10th March!  Further info on abstract submissions below:

https://www.rcpch.ac.uk/news-events/rcpch-conference

COMING SOON – New RCPCH Digital Growth Chart Project to include Down syndrome Growth Charts

The Royal College of Paediatrics and Child Health has developed an API ( Application Programme Interface). This is a national , web-based tool that will allow those wishing to use online growth charts, including the developers of electronic patient records to build accurate, validated  growth charts , with associated calculations into their applications.

DSMIG is working with the RCPCH to include the UK Down Syndrome Growth Charts in this product .

The Digital Growth Charts will launch in early 2021, and we will provide updates  about the  Down syndrome charts as they become available.

In the mean time more general information about the RCPCH Digital Growth Chart for potential users and developers can be found using the links below.

Presentation ” Digital Child Growth Assessment- from print to digital “

Demonstration site  https://rcpch-dgc-react-client-unstable.azurewebsites.net/

Open forum including information for developers https://openhealthhub.org/c/rcpch-digital-growth-charts/47

Any enquiries – growth.digital@rcpch.ac.uk

 

 

 

 

New Covid-19 Information – vaccine and UK variant

Covid-19 Update – New UK Variant and Vaccines

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 as part of that group. 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. For further detail see here

There is very limited evidence of the safety or efficacy of the vaccine in children, and it should not be offered. It may be considered on an individual basis for older children/young people ( Over 12 years) who are extremely vulnerable and at high risk of exposure to infection. See here for further detail.

All information relating to Down syndrome and COVID -19 can be found here. This is being updated to take account of new research findings and updated UK government advice as it becomes available .

28.1.21

NEW Guidelines on thyroid disorder in children and young people with Down syndrome: Surveillance and when to initiate treatment

NEW Guidelines on thyroid disorder in children and young people with Down syndrome: Surveillance and when to initiate treatment now available

Further details also available on Thyroid disorder topic page

The new thyroid guidelines  were officially launched on Friday May 22nd 2020

The event  also introduced the 2020 update of the Parent Held Child Health Record insert.

 

 

Growing concerns regarding late presentation for medical help for non-COVID related illness

There is growing concern that parents of  children who develop medical problems during the current Covid-19 epidemic may not be accessing medical advice early enough and as a result are becoming seriously unwell  with non-COVID related illness, which is amenable to treatment.

This may be particularly relevant for children ( and adults ) with Down syndrome who already have or may be vulnerable to a range of medical  problems that are associated with Down syndrome .

Parents and Carers should be reminded that if they are worried about their child they should seek prompt medical advice via their GP , or 111 or in an emergency their local hospital Emergency Department .

For further information please see the COVID-19 Statement on delayed presentations from the Royal College of Paediatrics and Child Health( RCPCH ).

A poster has been produced by the RCPCH advising parents on when they should seek medical help during the Covid 19 epidemic  – Advice for parents when child unwell or injured  poster

 

Updated 11.4.20

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