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87 Experiences of families with children in Bristol, United Kingdom with neurodisability during the COVID 19 pandemic restrictions
  1. Alexandra Nettleton,
  2. Caroline Bodey
  1. UK


Background Due to the COVID 19 pandemic from March 2020 until June 2020 the United Kingdom was under a National lockdown, with many health services and allied health professional services significantly impacted. We wanted to capture the experiences on children with disabilities and their families during this time.


  1. To assess the effects of the restrictions due to the COVID19 pandemic on children with disabilities and their families.

  2. Improve our understanding of the issues faced to enable us to support them.

Methods Telephone questionnaire interviews to eleven parents of children under the care of community child health with a neurodevelopmental disability.

Results Children’s access to therapy was significantly impacted with the majority of children not receiving their usual therapy. Access to the GP was reportedly more difficult and hospital appointments delayed and cancelled. Half of families reported medication being more difficult to get hold of. Respite care was unavailable. Families report being negatively impacted by through exhaustion and concern about their child’s health needs not being met.

The majority of the children did not attend education during the pandemic despite being in the vulnerable category. Some reported no contact from educational during this time.

Most families reported restrictions negatively impacted on their child’s physical health. Some didn’t take their children out for the duration of lockdown.

Changes in emotional well being of the children were reported ( appetite, disruptive behaviour, toileting regression, sleep regression, worsening spasticity and anxiety). Adults were emotionally affected by the restrictions (increased arguments, exhaustion, juggling increased demands and loneliness). Positives were also reported (more family time).

Access to support was minimal with only one family accessing emotional support. There were very mixed feeling about preference for clinical appointments including telephone, face to face, home visits and video links. Concerns were raised about fears of professionals in masks, language barriers worsened over the telephone and children struggling to engage with video consultations.

Conclusions The children on our caseload are vulnerable for a variety of reasons and require input from a range of multi professionals to meet their diverse needs.

The covid 19 restrictions had a negative impact not only on the services our children received but on their emotional and physical health and on the well-being of their families.

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