Disabled people, and families like mine, must be heard at the Covid inquiry

22-year-old Azhar is disabled and is cared for by his parents at their home in Birmingham. Azhar’s father, Saeed, explains why it’s so important to him that disabled people and their families are at the heart of next year’s public inquiry into Covid-19.

It’s been an extremely hard 18 months. Not just for the family, but more importantly for our son, whom our world revolves around. For disabled people and their families, the challenges have been numerous, and even now we’re not fully back to normal.

Like many, we’ve felt unsupported and have had to just muddle through.

My son, Azhar needs support 24/7 and usually attends a local day centre where he takes part in fun activities in a safe and supported environment, while we get a break from caring.

When the pandemic hit, the day centre closed. We were left to take on all of Azhar’s care without any support and make sure there was always someone there to help him with dressing, eating, bathing and toileting. I was the only one that left the house for weeks, and that was only for groceries. We were worried about who would fill the caring void if we caught Covid-19.

Even now, Azhar is only back at the day centre three days a week compared to the usual five.

Our priority is keeping Azhar safe, but getting his vaccine was also a challenge. Despite him being the most vulnerable, he was last in the queue, after everyone else in my family. The process was diabolical. The information we were given was very confusing and made it difficult to arrange the right support for Azhar. We were left without knowing whether the vaccine is safe for people with learning disabilities. It was a huge burden to be left to make this decision without clear guidance.

Sadly, I know there are many other disabled people and families who’ve had similar challenges throughout the pandemic. I’ve spoken up about this and will continue to use my voice to improve things for others. But if you’re not willing to speak up, it’s very difficult to get the right support.

That’s why it’s so important that disabled people and their families have their experiences heard and are called to give evidence as part of the public inquiry on Covid-19. Without this, there’s a real risk that the challenges many people have faced will be overlooked. We must learn from this time if we want things to change.