At the Foundation we have been highlighting the issues faced during the pandemic by our community by Covid-19 itself but also the unintended consequences of the pandemic such as delay in assessments for dual diagnosis, health screening or routine care.  We’re excited to highlight these new surveys and encourage you to share your experiences.

New Survey on the impact of the COVID-19 pandemic on children under 11 years old who have Down Syndrome

Are you a parent/carer of a child under the age of 11 who has Down Syndrome or know someone who is? Do you live in the UK?

Led by Professor Monica Lakhanpaul (UCL) has teamed up with the Down’s Syndrome Association and Trisomy 21 Research Society to develop a survey to understand the impact that the pandemic has had on children under the age of 11 who have Down Syndrome. They hope that this information will teach them how best to support children with Down Syndrome and their parents/carers going forward.

The survey covers a variety of areas that you may have noted a difference in your child since the pandemic.

If you qualify to take part, take 15 mins to answer this survey and/or share with those who may be eligible:




MyNeuroSurvey from the Neurological Alliance

Getting the right care, treatment and support at the right time can make a life changing difference when you have a neurological condition, like epilepsy, ASD or ADHD. But there are huge variations across the UK – not everyone with a neurological condition in the UK has access to the same high quality, joined up care and support.

By sharing your experiences, you’ll help to gather the evidence to make the case for change. My Neuro Survey is completely anonymous and secure. Suitable for adults and children.

Or call the survey partners, Quality Health on 0800 783 1775 (Freephone) to:

  • hear and complete the survey over the phone in 150 languages
  • ask for a paper copy to be sent to your address
  • ask for a large print version
  • ask for an Easy Read version of the survey

The survey takes around 20 minutes to complete. Your answers will help improve services for people with neurological conditions across the UK.

Data from previous surveys has been used to improve services in hospitals, develop new specialist centres, and spark debate in Parliament. The survey takes around 20 minutes to complete. Please take part and make your voice heard.

Thank you to everyone who has taken part so far – your responses make the neuro community heard and seen.


Did you see?

Our chair recently co-authored a paper  The COVID-19 pandemic should be last orders for poor care of people with neurodevelopmental disorders.” with Professor Andre Strydom and Dr Anne-Sophie Rebillat. 

You can read it here.