#LeftInLockdown – Pandemic Campaign and Research Overview

With vital support services like therapies, health appointments and respite care delayed or withdrawn, disabled children have faced the brunt of the pandemic. Conditions have worsened. Families are exhausted. They need targeted support from central and local government and the NHS to help them recover. 

 

Our #LeftInLockdown campaign exposes this reality. From surveying hundreds of parents carers during the pandemic, we have seen that the consistent delay of services has had a massive impact on the physical and psychological development of children, and grossly impacted the mental health of parents.   

Disabled children, young people and families can’t be left out of the national conversation on recovery. The government needs to implement targeted recovery policies to help them heal. 

Sign-up to the campaign.   

A large number of MPs and Peers from across the Conservatives, Labour, SNP, Liberal Democrats, Greens and others have signed up to become ‘Disabled Children’s Champions’ and back dedicated recovery for children and families. You can see if your MP has signed up – and if not, how to ask them to sign-up – here.

Our research 

Since the beginning of the pandemic, we have conducted lots of different types of research to track the experiences of disabled children and families.  

  • Then There Was SilenceSeptember 2021. Our final, holistic report on the pandemic, brings together all of our findings, including: all of our surveys, freedom of information requests, analysis of NHS data sets, and an evaluation of the charity sectors response to the pandemic. 

Then There Was Silence builds on a number of earlier reports: 

  • ‘Locked Out’: Digital Disadvantage of Disabled Children, Young People and Families during the Covid-19  PandemicAugust 2021. This report demonstrates how many disabled children, young people and their families experienced both positive and negative experiences of digital services during the lockdowns.  
  • Left Behind, June 2021. This survey report features responses from nearly 300 parent carers, as well as the findings from a series of FOI requests of local authorities and health service providers. 
  • No End In SightApril 2021A survey of over 400 parent carers revealed that – despite welcome government assurances that services should be reaching families – many families still could not access essential support.   
  • The Loneliest LockdownMarch 2021Focusing on the mental health and wellbeing of families this survey revealed that disabled children and their families are at risk of developing serious mental health issues as a consequence of the COVID-19 pandemic on their lives.   
  • The Longest Lockdown, January 2021. With responses taken during the third national lockdown, the findings reveal disabled children were not receiving support for their disability or medical condition via health services or their school placement. 
  • Back to school pollDecember 2020. Following the first national lockdown, we carried out a further poll of parents to see how things has changed, and in particular how the return to school had gone. 
  • #LeftInLockdown – Parent carers’ experiences of lockdown, June 2020. Our original survey of parent carers which received over 4,000 responses. They told us that in 76% of cases, the vital care and support they relied on had stopped altogether, leaving parents and young siblings taking on all care responsibilities around the clock. 

Key statistics from our research 

  • Nearly three quarters (71%) of disabled children have seen progress managing their conditions – and their overall development – regress in the pandemic. 
  • Over 70% of disabled children are still unable to access pre-pandemic levels of therapies and health services. 
  • As essential services were denied, more disabled children are also in pain – with the number of children visiting pain management clinics reducing by over 80% since before compared to before the pandemic. 
  • 7 in 10 NHS Trusts are failing to meet their targets for providing services for physiotherapy appointments and over half of local authorities have failed to meet their targets for providing vital Education, Health and Care plan assessments – leaving many disabled children unable to access vital services they need to manage their conditions.   
  • 40% of local authorities have cut respite care for families in the pandemic– despite the prevalence of relationship breakdown and social isolation in parents. 
  • 9 in 10 disabled children were socially isolated in June 2021, with three quarters (76%) seeing no improvement over the course of 2021 despite lockdown measures easing. 
  • Parental anxiety was consistently high in the pandemic with more than 80% of parent carers of disabled children having some form of anxiety despite the easing of restrictions.
  • 72% of parents report that their child is often unhappy, downhearted or tearful. 

Our recommendations   

In light of the significant detrimental impacts disabled children and their families have experienced throughout the pandemic.  Then there was silence includes five steps for central and local government to take to ensure that disabled children and families have the same opportunities for recovery as their peers.  These build on our existing calls for specific, funded recovery policies 

 Our five steps for government and the NHS are: 

  1. Prioritise the needs of disabled children and their families within covid recovery plans and programmes 
  2. Tackle the backlog in assessments and ensure that children’s needs are re-assessed in light of missed support during the pandemic.
  3. Ensure the right support is in place for all children and families, including education, health (including mental health), therapies and equipment 
  4. Take a whole family approach to assessments and support, including siblings. This should include the provision of respite/short breaks and opportunities for families to take part in activities to overcome the isolation felt by so many.
  5. Invest in disabled children’s health and care services through the Comprehensive Spending Review 

Then There Was Silence also highlights the invaluable role that the voluntary sector has played in supporting children and families during the pandemic.  It includes recommended steps for charities, funders, and the DCP to take to build on these experiences to continue to help families over the coming period. We have also produced a short briefing document on the findings, and one aimed particularly at charities and funders.

COVID-19 has merely shone a light on the existing inequalities that already existed in disabled children’s health and care services. The system is in desperate need of reform and additional funding so every disabled child can have access to the services they need to manage their condition and development, have a great education, and the best possible start to life. Read more about our campaigning for long-term reform in our ‘Three Pillars’ blog. 

Help us make this recovery happen. Join the campaign.