The death rate of people with a learning disability in care settings more than doubled from the previous year after the peak of COVID-19. The Care Quality Commission reported than most of the 206 deaths were attributed to suspected or confirmed coronavirus.

People with learning disabilities have died at a much younger rate – with a third aged 55-64, in contrast to 89% of people aged over 65yrs in the wider population. Yet the government has explicitly prioritised those caring for people aged over 65 or with dementia.

The impact of COVID-19 on people with learning disabilities is a particular concern. The data does not explain whether these individuals had underlying health conditions, or if they had been tested, so we cannot draw conclusions about how having a learning disability affects how likely someone is to get the virus or experience it more severely.

We know that there are health inequalities for people with learning disabilities. Collecting data is the first step in taking effective action. So not doing so is very worrying. We support the ‘Every death counts campaign’ and challenge NHS England's decision not to publish data about the deaths of learning disabled and autistic people.

There are some more obvious factors as to why the death rate could be so high. People with a learning disability are living in close proximity to others, staff have not had adequate PPE, social isolation has meant that people have not seen family members who can watch out for them, and many will have underlying health conditions which make getting the virus more serious.

We have also seen the blanket use of DNACPR orders among disabled people. Protective measures could include coronavirus testing, and improved consultation with the person, family members and carers about the care of their loved ones. For those without family or friends, advocacy is a fundamental safeguard for people who lack capacity in these decision making processes.

Despite lockdown and social distancing, advocates can still offer support through face-to-face meetings – for example, visits in gardens, walking in the open so they can talk privately while observing social distancing.

Advocacy is more important than ever. We provide important representation on behalf of people who lack capacity as decisions are made about their lives. Advocacy Focus encourages referrals into our Advocacy Hub and to access our additional services in response to COVID-19, our telephone befriending service, and the Pen-demic Pals service. Through Disability Confident, our active Time to Change team and our Learning Disability Champions, we are working to ensure that disabled people and those with long term health conditions have their voices heard, and stay connected to their community.