Coronavirus: Hundreds of learning disability deaths in just eight weeks, new data shows

Charity Mencap warns of 'discriminatory practice' adding 'this is a matter of life or death and the lives of people with a learning disability matter equally'

More than 460 people with a learning disability have died from coronavirus in just eight weeks since the start of the outbreak in England.

New data shows between the 16 March and 10 May 1,029 people with a learning disability died in England, with 45 per cent, 467, linked to coronavirus.

Overall the number of deaths during the eight weeks is 550 more than would be expected when compared to the same period last year.

The charity Mencap warned people with a learning disability were “being forgotten in this crisis” and called for action to tackle what it said could be “potentially discriminatory practice.”

It highlighted the percentage of Covid-19 related deaths among learning disabled people was higher than those in care homes, where the proportion of Covid-19 deaths was 31 per cent for the same period.

The data has been published after an outcry over the lack of transparency about the impact of Covid-19 on mental health patients and people with a learning disability or autism.

The deaths have been reported to the national Learning Disabilities Mortality Review programme, run by Bristol University, world first project to begin collecting data on learning disability deaths across the country.

NHS England receives a weekly set of data from the programme and it had come under pressure to publish the data.

Last week it said 1,020 mental health patients had died in hospital between 24 March and 12 May with coronavirus, 5 per cent of all Covid-19 fatalities. A total of 451 patients who died were described as having a learning disability or autism.

Chris Hatton, a professor of public health and disability from Lancaster University, told The Independent the number of deaths was worrying but lacked crucial additional information such as age, gender and where people lived.

He said: “It would be helpful for NHS England to show their working to the public. What the Leder data could do is tell us where people lived when they died so we can understand what location people were in and whether it’s more likely they were in a particular type of setting like a care home or living with family or in some sort of independent living accommodation. We don’t know anything about the people living in these locations.

“It does frustrate me because the information is there and could be analysed better. There is a whole group of people who are missing from the conversation and we need to be ready for the second spike.”

According to Public Health England around 3,400 people with a learning disability die each year, around 240 people a month.

Mencap said it would expect around 480 deaths during the eight week period covered by NHS England’s data but instead there had been more than 1,000.

Edel Harris, chief executive of Mencap, said she was “deeply troubled” by the data adding: “people with a learning disability are dying at double the rate in previous years. Almost half of deaths of people with a learning disability were Covid-19-related – higher than the proportion of Covid-19 related deaths in care homes – yet people with a learning disability continue to be forgotten in this crisis.”

She added: “Over the last few months we have repeatedly challenged discriminatory healthcare guidance and practice and continue to support people with a learning disability and their families to access the treatment and support they have a right to. That’s why it is more important now than ever that the government and NHS urgently complete a timely, full and accurate assessment of Covid-19-related deaths of people with a learning disability across all settings so that steps can be taken to address any potentially discriminatory practice now.

“This is a matter of life or death and the lives of people with a learning disability matter equally.”

An NHS England spokesperson said: “Covid-19 is a new disease and clearly more research is needed to understand its impact on different groups of people, so although early NHS data show that the number of Covid-19 deaths in hospital of people with a learning disability is broadly in line with the rest of the population, it’s clearly important that – working with PHE, charities and government – we continue to monitor all available evidence so that we can put in place any measures required to protect people, and this is why we are publishing this raw data from our LeDeR programme.”