DSMIG Winter Meeting 4th November 2021

This year’s DSMIG Winter Meeting will be held on 4th November. Please find the agenda below or download a flyer here. Please do share this information with your local networks.

 Time
 9.00-11.15 Members meeting (DSMIG MEMBERS ONLY)
 9.00  Annual General Meeting
10.00 Break
10.05 Case discussion – members’ problem cases & recent queries handled by the DSMIG team
11.15 Coffee break
11.45-4.15 Open meeting – Welcome from President and Chair, Shiela Puri
 11.50 Updates from the Immunology Clinic in Children With Down Syndrome Professor Eleanor Malloy, Neonatal Consultant and Professor of Paediatrics & Child Health, Trinity College, University of Dublin
 12.30 The Voices of Young People With Down Syndrome Through the COVID 19 Pandemic
Eddie McConnell – Chief Executive, Down Syndrome Scotland
 13.10 Lunch
 13.50 Feeding and Nutrition in Children with Down Syndrome
Himali De Silva – Highly Specialist Speech and Language Therapist,
Evelina London Children’s Hospital
 14.30 Reducing the Impact of Sepsis on Children with Down Syndrome Dr Elizabeth Herrieven – Consultant in Paediatric Emergency Medicine, HUTH NHS Trust
 15.10 Coffee break
15.20-16.20 Current Research, Audit and Guidelines Update
15.20 Update from the Feeding and Autoimmunity in Down Syndrome Evaluation Study (FADES), Georgina Williams, University of Bristol
15.50 Update on COVID 19 infection in children with Down Syndrome and other Current Global Research Projects
Professor Monica Lakhanpaul, Professor of Integrated Community Child Health UCL Great Ormond Street Institute of Child Health
16.20 Closing remarks

The cost of the event is £50 for doctors and trainees and £25 for Allied Health Care Professionals.

RCPCH has approved this activity for CPD in accordance with the current RCPCH CPD Guidelines.

Please note that the Winter Meeting has now been confirmed as a VIRTUAL event.

Please book your tickets for the open meeting here

Once you have registered and paid you will be sent the relevant Zoom link in the week prior to the Winter Meeting. Please note that there will be a separate Zoom link for DSMIG members to attend the AGM in the morning and a separate link for those joining the (open) academic meeting at 11.45am.

Target Audience for the Open Meeting:

Doctors and nurses with an interest in Down Syndrome.

Paediatricians (Community and Acute), Allied Health Care Professionals who work with adults and children with Down Syndrome (DS) e.g. Speech and language therapists, physiotherapists and occupational therapists, student and trainee doctors and nurses

Other professionals welcome:

Teachers and educational psychologists involved with CYP with DS.

Aims
  • The audience will gain an update on the recent immunology research and its clinical impact
  • The audience will gain an understanding of the experience impact of the COVID 19 from the perspective of young people with Down Syndrome.
  • The audience will gain an insight of work done to reduce the impact of sepsis in Children with Down Syndrome
  • The audience will gain understanding of feeding and nutritional difficulties for children and young people with Down Syndrome
  • The audience will gain an update on the latest information from the FADES study and discuss local clinical application
  • The audience will be updated on the most recent clinical health research on COVID 19 in people with Down Syndrome and other current global research projects.

Covid-19 and Down Syndrome

Information about Covid-19, how it may affect people who have Down syndrome and resources for health professionals and families.

Please see the latest update related to Covid-19, below. Please see here for general information.

The JCVI is advising that children at increased risk of serious COVID-19 disease are offered the Pfizer-BioNTech vaccine.

That includes children aged 12 to 15 with severe neurodisabilities, Down syndrome, immunosuppression and multiple or severe learning disabilities.

The JCVI also recommends that children and young people aged 12 to 17 who live with an immunosuppressed person should be offered the vaccine. This is to indirectly protect their immunosuppressed household contacts, who are at higher risk of serious disease from COVID-19 and may not generate a full immune response to vaccination.

The T21RS data suggests that young people who have Down syndrome are at a greater risk of developing complications related to COVID-19, although the numbers were low and the evidence relates to data collected during the first wave of COVID-19 i.e.  till June 2020.

The vaccine is being offered to decrease the severity of COVID-19  disease, if contracted.

Real-world data on the safety of COVID-19 vaccines in children is currently limited, but there have been extremely rare reports of myocarditis (inflammation of the heart muscle) and pericarditis (inflammation of the membrane around the heart) following the use of the Pfizer-BioNTech and Moderna vaccines in millions of younger adults. We do not know why this occurs, an underlying cardiac condition does NOT make the person more vulnerable.

The vaccine prevents severe disease, but does not necessarily prevents anyone from getting COVID-19 or PIMS.

It is important to reassure families that being offered vaccination is not equated with being Clinically Extremely Vulnerable. The vast majority of children with severe disabilities are not CEV and it is important that the families do not go back to shielding and children not going to school. The decision if a child/ young person is clinically extremely vulnerable is dependent on their underlying associated medical condition e.g. receiving chemotherapy or immunosuppressive medication etc.

We are aware that children and young people with a severe and moderate intellectual disability, would find it a challenge to maintain measures to prevent contracting COVID-19,  e.g. tolerance to wear a face mask and strict hand hygiene measures and in addition may find hospitalisation a more challenging experience. It is for these reasons young people with a significant intellectual disability are being offered the vaccine.

We are unaware of any deaths from COVID-19 in children with Down syndrome in the U.K.

For further information visit the JCVI site https://www.gov.uk/government/news/jcvi-issues-advice-on-covid-19-vaccination-of-children-and-young-people

12.8.2021


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 (T21RS)  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. T21RS are also undertaking research into COVID-19 vaccines.

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

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