Feeling like my family has been forgotten has been the worst part of the pandemic

Claire lives in Cambridgeshire and cares for her son, Hugo. She shares her story and why she believes it’s important that disabled people are represented in the Covid-19 inquiry.  

This year’s undoubtedly been one of our hardest. Like many disabled people and their families, we’ve really felt cut off and left behind.  

My son, Hugo has CHARGE syndrome, a rare genetic disorder that affects many different parts of the body. It’s incredibly complex and affects everyone differently. 

While Hugo does function well, his diagnosis includes being deafblind with severe hearing loss and significant visual impairment, as well as other serious health conditions.  

We’ve been incredibly lucky over the years to be connected with different support groups and other families with disabled children. This has been a real lifeline for us, but when this stopped last year due to the pandemic, it was a real shock. 

Hugo and his mum Claire smile for the camera. His mum has long blonde hair, and Hugo has blue glasses and a Stars Wars t-shirt
Claire and her son, Hugo, felt cut off and left behind during the pandemic.

We felt left behind and cut off during lockdown

Overnight all of Hugo’s usual care that we get at home stopped, and we were left with no support. It suddenly felt like a huge gap in our lives that we were left to fill on our own. And even now 18 months later we still don’t have the same support and help. 

From March last year we had to shield as a family to keep Hugo safe. It was really tough and impacted all of us, including my three other children. 

And I still don’t feel like we can relax. Despite the guidance around shielding having eased, lockdown is not over for us. Even though we’re vaccinated, we don’t yet know Hugo’s immunity so we still avoid busy public places. We’re constantly looking over our shoulder, terrified that Hugo will catch Covid-19.  

For disabled people and their families, the consequences of the pandemic are ongoing 

I know we’re not alone in feeling this way. There are many disabled people and families that continue to shield and are fearful to go out. We don’t feel like we can return to normality like so many others. It feels like the government still doesn’t understand how many families and individuals are still scared and suffering out there.  

Feeling like my family and many others with disabled children have been forgotten has been the worst part of the pandemic. The public inquiry into Covid-19 next year is an opportunity to have our voices heard. But I’m concerned that unless the inquiry is run by a panel of people that includes disabled people, our experiences will be overlooked again. 

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