I’m campaigning so that families like mine aren’t forgotten

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.  

For some people, thinking back to where we all were two years ago is going to be hard. I understand the desire to move on, but actually for families with disabled people, the worry and isolation of the Covid lockdowns has lingered on. 

The impact of the pandemic has been particularly severe for families like mine. There was so much support that we didn’t get. That’s why the Covid inquiry is so important. It has the potential to recognise how people suffered as they tried to do the right thing and protect themselves. 

We felt left behind and cut off during lockdown

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. Hugo has 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 disappeared in the pandemic, it was a real shock.  And even now 18 months later we still don’t have the same support and help.  

Overnight, all of Hugo’s usual care that we get at home stopped. 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.   

One of the biggest issues we had early one was getting hold of PPE equipment. We weren’t given any, we couldn’t source it ourselves. As a family of six isolating in one house, we needed that extra level of protection for Hugo. 

The consequences of the pandemic are ongoing 

Through Sense’s campaign to put disabled families at the heart of the Covid Inquiry, we were given a voice. Having a chance to share our experiences was important to me. I wanted to be part of the effort to get us included in conversations about how the Inquiry would pan out. 

Hugo and I went in for the petition hand-in at Downing Street, which was a great moment to be part of. But I don’t feel our work is done. 

Disabled people still aren’t able to fully relax. Many of us are looking over our shoulder, scared that Covid will enter our homes. And now that means paying for tests – people can’t afford to be testing 3-4 times a week, they can’t afford to meet their safety needs. 

Our experiences should not be overlooked

We don’t feel like we can return to normality like so many others. I know a lot of people found the lockdown hard, but the reality is that when you look after someone with disabilities you actually are isolated quite a lot of the time.  

Whether it’s quarantining before/after hospital appointments, or just providing full time care to someone who’s quite unwell – we’re often cut off. 

Many families and individuals are still scared and suffering out there. It’s really important that the Covid inquiry is run by a panel that includes disabled people so that our experiences won’t be overlooked again.