Covid-19: People with Neurological Conditions

Baroness Eaton Excerpts

Thursday 27th May 2021 Grand Committee

[Baroness Eaton (Con) [V]]

My Lords, 22q11 syndrome is a common neurodevelopmental disability hiding in plain sight because it is massively undiagnosed, yet 128,000 people in the UK are estimated to be affected. A prevalence of one in 500 of the population is reported—twice that of Down’s syndrome and almost six times that of cystic fibrosis. Its effects, unique to each individual, range from fatal heart defects, catastrophic immune deficiency and severe learning difficulties through to mild behavioural problems, speech and language issues and facial characteristics. Neurodevelopmentally, these children have challenges in learning, with developmental delays in speech, cognition and motor development. Many are affected by behavioural and psychiatric issues. It is a multisystem disorder and the greatest genetic risk factor for schizophrenia.

The lack of awareness of 22q11 syndrome means that there is an extreme lack of specialist services and, often, a lack of understanding of children’s learning challenges. Many were asked to shield during the pandemic and the services they need were greatly affected. Appointments were either lost completely, with hospital clinics shut down and therapy services unable to proceed, or substituted with telephone conversations. Many missed months of school due to their medical issues. Home-schooling packs were often inadequate for meeting their needs and did not cover the requirements under their educational healthcare plan or individual education plans. Their mental health often suffered and parents reported more behavioural issues. Progress was already slow, compared with their peers, and many have fallen back even further educationally.

The long-term outcomes will likely prove more severe than previously expected, meaning a greater difficulty in attaining the baseline levels required to enable them to progress into post-16 education. Given the difficulties for children and young people affected by neurodisabilities such 22q11 to catch up and recover lost education, how will the Government support them to ensure that they achieve their best possible educational outcomes? What reassurances can my noble friend the Minister provide to those families that support will be forthcoming?