Deaths of people with learning disabilities receiving care more than double those in previous year

Deaths of people with learning disabilities receiving care and support were more than double the previous year’s figures in the period immediately following the peak of the coronavirus epidemic in the UK.

From 10 April to 15 May, the Care Quality Commission received notifications of the deaths of 386 people with learning disabilities from providers delivering specialist services, 134% up on the 165 recorded in the previous year. Most of this difference is covered by the 206 deaths attributed to suspected or confirmed Covid-19.

The figures also showed that people with learning disabilities were dying from Covid-19 at a much younger age than the wider population. While 89% of people to have died from suspected Covid-19 up to May 22 this year were aged 65 or over, deaths from the disease were highest among people with learning disabilities aged 55-64, who accounted for a third of Covid deaths in the CQC figures. This reflects the 20-year life expectancy gap faced by people with learning disabilities in the UK.

Source: CQC

The figures follow significant concerns about the impact of Covid-19 on people with learning disabilities, the lack of data to capture this, insufficient access to testing and personal protective equipment (PPE) for staff and the blanket use of do not attempt cardiopulmonary resuscitation (DNACPR) orders among disabled people.

Need to tackle health inequalities

Responding to the data, learning disability charity the Challenging Behaviour Foundation said: “We know that people with learning disabilities are at greater risk of premature and avoidable deaths and the combination of underlying health conditions and accessing timely healthcare increase those risks during the pandemic. 

“There is an urgent need to consider the issues raised by the data and to focus on this group of people with appropriate protective measures which need to be put in place immediately.”

It said this required better and equal access to healthcare, including coronavirus testing, for the group, as well as to PPE for staff, as well as improved consultation with family members and carers about the care of their loved-ones.

Chief executive of advocacy provider VoiceAbility Jonathan Senker expressed similar views in a Twitter thread responding to the data, saying there needed to be better access to general healthcare – which has fallen generally – to tackle health inequalities for people with learning disabilities, and improved access for testing among people aged under 65 receiving care and their staff.

In rolling out testing to care home residents and staff, the government has explicitly prioritised those caring for people aged over 65 or with dementia, limiting access to kits to test all staff and residents to these homes.

Senker also called for much greater involvement of people with learning disabilities themselves, as well as their families, in decisions about their care and treatment, as well as their families, and also questioned whether people should be placed in large settings given the risks of Covid-19 transmission.

4. Consider with extreme caution whether people should remain living in, or move to large settings – which evidence from older people in residential and nursing care demonstrates are especially risky.

11/13

— Jonathan Senker (@Jonathan_Senker) June 2, 2020

Despite the scale of increases in the number of deaths, the CQC figures are likely to underestimate the problem as they capture the period just after the peak in the number of deaths overall from Covid-19, on 8 April.

Also, they do not include deaths of people detained in hospital or subject to community measures under the Mental Health Act 1983 – recorded fatalities among whom have also increased significantly on previous years. In addition, providers are not required to tell the regulator whether a person who has died while receiving their services, or potentially because of the provision of services, has a learning disability, meaning many other people’s deaths may not have been captured.

Care home deaths falling but still high

The release of the CQC figures coincided with the latest weekly figures on deaths from the Office for National Statistics, which showed that fatalities in care homes, both generally and from Covid, were decreasing but were still above levels recorded in the previous five years.

In the week ending 22 May, there were 3,350 registered deaths of people in care homes in England and Wales, with 1,090 from suspected or confirmed Covid-19, down from a high of 7,911 fatalities overall, and 2,794 from Covid, in the week ending 24 April, since when there has been a steady fall.

However, while the number of ‘excess deaths’ – the increase in the number of fatalities over the average for the equivalent time in the previous five years – has been falling week by week in care homes, it was still 1,289 in the week ending 22 May. So far there have been 76,061 deaths in care homes in England and Wales since the start of the year, compared with 52,901 on average over the same period from 2015-19, an increase of 44%.