Life for people with learning disabilities through the pandemic: what have the first wave findings told us?

Blog by Gary Bourlet, Membership and Engagement Lead and self advocate

The findings from the first set of interviews of the Coronavirus and People with Learning Disabilities research project was published today.

Reading it has reminded me that this week marks one year since the first lock down in March of 2020.

The research findings remind all of us that it has been a hard year for a lot of people with learning disabilities.

There has been sadness, loss and loneliness experienced by a lot of people.

But we have also learnt many new things and showed how we can work together and support each other.

The research was carried out by interviewing people with learning disabilities.

And for those that could not take part in an interview, their support person could fill out a survey.

More interviews are going to take place in the future, but I am going to talk about the findings from this first wave of research.

There were some findings that weren’t so good to see from the research.

For example, people have been getting a lot less help with their health.

Lots of people have also been suffering with loneliness and haven’t been able to take part in their usual community and social activities.

99% of people said their community activities had stopped or got less.

Many people said they knew someone who had died from the virus as well.

And over half of family carers who filled in the survey said their health had been affected in a bad way in the 4 weeks before they filled the survey in.

Though this is sad to hear, we can learn from what the research has found.

For example, improvements can be made in health services.

Some more positive findings were also found as well.

Most people who work had not lost their job because of Covid, though some people could not go to work at the moment.

Almost all the people who were interviewed had access to the internet and a computer.

And over 70% of the people interviewed said they had still been able to stay in touch with people who matter to them as much as they wanted.

Although some people had hospital appointments cancelled, three quarters of people interviewed said their appointments had still taken place.

And where people had been taken into hospital who didn’t have Covid, over 80% of them were allowed to have someone they trust stay with them in hospital.

The research is helping to show what life has really been like for people with learning disabilities during the pandemic.

It is so important that research like this takes place because it helps make sure the voices of people with learning disabilities and their stories and experiences are heard.

That’s because it is often the case that the voices of people with learning disabilities are not heard.

Or other people speak for us.

This research will help us to tell our stories about what our life really has been like.

And help the government  and other people who make decisions to decide what needs to change and what we have all learnt.