The Impact of COVID-19 in Individuals with Down Syndrome

The following information has been provided by André Strydom, a professor in intellectual disabilities at King’s College London and one of the authors of the research paper outlined below.

“As you may be aware, NHS England has announced that people with Down syndrome should be added to the clinically vulnerable list due to recent reports showing that they may be at increased risk for poor outcomes following a COVID-19 diagnosis. We have yesterday published our preprint report based on work done within the T21RS which may be good to circulate.

The preprint report is open access and available here https://www.medrxiv.org/content/10.1101/2020.11.03.20225359v1

The report contains information on symptoms, risk factors and outcomes following a COVID-19 diagnosis in people with Down syndrome.

Key findings are that, similar to the general population, the most frequent signs and symptoms of COVID-19 were fever, cough, and shortness of breath. Pain and nausea were reported less frequently (p<0.01), whereas altered consciousness/confusion were reported more frequently (p<0.01). Risk factors for hospitalization and mortality were similar to the general population (age, male gender, diabetes, obesity, dementia) with the addition of congenital heart defects as a risk factor for hospitalization. Mortality rates showed a rapid increase from age 40 and were approximately three times higher than for controls even after adjusting for known risk factors for COVID-19 mortality. The risk in those over age 40 was comparable to individuals in the general population aged 80 and older.

However, individuals under age 40 were approximately 90% less likely to die than those over age 40. Furthermore, few children age 19 and younger were severely affected, suggesting that the risk in children and young people could potentially be balanced against quality of life.

We would like to recommend that in addition to individuals with Down syndrome being offered flu vaccinations, vitamin D supplementation and the pneumococcus vaccine should also be considered this season, and we are working with Down syndrome organisations to have this considered – we would welcome the LD senate’s views on these recommendations.”

Learning Disability Liaison Nurse Review

Health Education England have published reports regarding learning disability liaison nursing. The full report, as well as appendices and easy-read version can be found below.

Research: Accessible Tourism for People with Disabilities

[Posted on behalf of Freya Rattenbury]

Hello!

We are a group of final year Surrey University students working on a consultancy project alongside Kent County Council with an aim to make countryside tourism accessible to the disabled market. We are therefore researching into the disabled market in aim to understand their accessibility needs. We also need to have a better understanding about the most effective marketing strategies for this audience. We are reaching out to you as charities in hope that you can aid us with our secondary research and would consider a short constructive interview regarding this market, marketing strategies, their needs and overall to help enable us to improve access to the Kent Countryside. If you would be happy to cooperate over an interview, please respond with a telephone number or appropriate email. 

We have also constructed a market survey that we hope will give us a deeper understanding of our audience. The survey looks to gain an understanding of your past experiences when engaging with tourist destinations, where you would look for tourist destinations and how you feel about what is currently available to you. 

It would be massively appreciated if you could share this survey with your contacts, directly to disabled people or carers, assisted living, residential or care home partners, and local charity branches. 

Please click here for the market survey link.

We very much look forward to hearing back from you.

Research Call – Parents of Children with Learning Disabilities and Feeding Difficulties

Suzy Mejia-Buenano, a PhD student at the Tizard Centre, University of Kent is conducting a study exploring parents’ views of feeding difficulties and related supports in their children with learning disabilities. This study has been approved by Tizard Centre Ethics Committee and is being supervised by Dr. Nick Gore and Dr. Ciara Padden.

Taking part in this research will involve participating in a recorded, online 1-1.5 hour interview through Microsoft Teams with Suzy. You will also be asked to provide some short demographic information. All you need to take part is a mobile, tablet, laptop or computer with internet access. You do not need any apps or software; a link will be provided, and you will just have to click the link.

You can participate if your child is between the ages of 1.5 and 18 years, has a learning disability or global developmental delay, and a behavioural feeding difficulty (food refusal, selective eating, or challenging mealtime behaviours). Your participation is entirely voluntary.

If you or anyone you know is interested in participating, please do not hesitate to get in touch with Suzy (sm2197@kent.ac.uk) and we can have an initial discussion and provide an information sheet with more details about participating. Please feel free to share this research information widely. 

Thank you in advance for your support and interest in this research.

Contact details: Suzy Mejia-Buenano (sm2197@kent.ac.uk)