How we're campaigning for a post-pandemic world that works for people with neurodevelopmental conditions

The COVID-19 pandemic has affected us all, but the particular impact on people with neurodevelopmental conditions is often overlooked. For many, the lifting of the first lockdown did nothing to improve their lives.

We're working together to highlight these experiences and ensure people with neurodevelopmental conditions are not left behind again during and after the pandemic.

Our Select Committee responses

During the first wave of COVID-19 in the UK, we submitted evidence to various Parliamentary Select Committee inquiries into the Government's handling of the pandemic. These are available to read below:

Women and Equalities Select Committee (28 April 2020)

Health and Social Care Select Committee (5 May 2020)

Department for Culture, Media and Sport Select Committee (22 May 2020)

Education Select Committee (24 June 2020)

Campaigning for the right to life-saving healthcare

In March 2020, NICE guidance recommended the use of a decision-making tool called the Clinical Frailty Scale, which could have denied life-saving ventilator support to healthy people with neurodevelopmental conditions in the event that they contract COVID-19. At the same time, reports began to surface of people with neurodevelopmental conditions being pressured to sign Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders.

Embracing Complexity and our members worked quickly to raise these issues with NICE and NHS England. In response, the NICE guidelines were urgently revised and all primary, community and acute NHS services in England were warned against using DNACPR orders across blanket groups.

Further support

Our host charity, Autistica, have created a list of organisations offering support on a range of issues during the COVID-19 pandemic

Support during COVID-19

COVID Complexity

Many people with neurodevelopmental conditions have been hit exceptionally hard by the COVID-19 pandemic - and for most, little changed as the first lockdown eased. At the same time, remote participation has enabled some to thrive.

Our survey of 160 people with NDCs, relatives and carers highlights why the post-pandemic world must do more to support all people with NDCs.

Challenges facing the charity sector

When the pandemic took hold, charities faced a huge reduction in income just as their support was needed most. Ahead of a House of Lords debate in April 2020, we highlighted the experiences of our member charities in this briefing.