Discussing the knock-on effects of COVID-19 for parents of children with SEND in Westminster

Healthwatch Central West London launched a grant scheme to reach groups who are under-represented in research just as the Covid-19 pandemic started.  This report focuses on the needs on parents caring for children with special communications needs and disabilities.  They spoke to 14 members of a local group.

Almost every parent participating in the group expressed the need for clarity and forward-planning in every aspect of their child’s care, owing to the complexity of their child’s needs. 

Parents were concerned about school closures. While they shared the same fears of infection as other parents, they also rely on schools for a number of health-related support services for their children, including occupational therapy.

A prominent theme in this group was how different services would explain changes to individuals with SEND. Many of the parents, whose children have forms of autism or global delay, had used visual narratives (“Social Stories”) to illustrate certain situations.

The participants had existing challenges within the health and social care services, in particular with knowing what their child was entitled to. The uncertainty surrounding COVID-19 measures had exacerbated the feeling of having to fight for these entitlements.

When asked how the COVID-19 outbreak had affected their relationships, one participant highlighted that being a member of a support group had helped her during an emotionally challenging period. This sentiment was echoed by other members, who credited the support group with being their primary informative resource and a place where they felt understood and supported by people who shared their experiences.

Part of the conversation turned to how access to video conferencing tools had been a positive influence on the participants’ access to health and social care. The participants said that it was unhelpful to assume that video conferencing and other digital tools were readily available to everyone. However, for those who did use them, they proved to be an important direct line to services that supported their family’s wellbeing.

When asked about losses to income, some of the group were forthcoming about their household finances, but more of them said that they were especially fearful of how an economic downturn would affect their access to health services.

Most of the participants in this group were on the “shielding list”, meaning that they had to take extra measures to isolate from the public during the COVID-19 lockdown period. For some parents, as seen earlier in this document, their child was able to attend school because they would receive more specialised support in the school than they would be able to if they had to self-isolate. As with the wider public, the group’s participants mentioned having had treatment delayed and appointments cancelled, adding strain to their already challenging experiences with accessing care for their children.