BASW England responds to latest Public Health England report into deaths of people identified as having learning disabilities during spring wave of Covid-19

This latest information paints an increasingly stark and concerning picture about the way that people with learning disabilities have been treated throughout the first wave of the pandemic

BASW England is shocked and horrified that the death rate for people with learning disabilities from coronavirus during the first wave of the pandemic is up to six times higher than the general population. 

This is the headline statistic taken from the recently published Public Health England report ‘Deaths of people identified as having learning disabilities with COVID-19 in England in the spring of 2020’, which examined data from The English Learning Disabilities Mortality Review (LeDeR) and NHS England’s COVID-19 Patient Notification System (CPNS) which records deaths in hospital settings.

This latest information paints an increasingly stark and concerning picture about the way that people with learning disabilities have been treated throughout the first wave of the pandemic.

BASW, the professional association for social work, welcomes this report and the collation of data which starts to address the gaps and provide much-needed scrutiny on the lives of people with learning disabilities, and those that have sadly lost their life to Covid-19.

Maris Stratulis, BASW England National Director, said: “The report identifies that COVID-19 increased the number of deaths for people with learning disabilities to 30 times higher than the rate in the same age group without disabilities and by a greater margin than for the general population, across all adult age groups.

“This appalling disparity reflects the disproportionate impact of the pandemic and deepening inequalities for people with learning disabilities. There is also a distinct absence of any information about the deaths of autistic people which is discriminatory and cannot be allowed to continue. BASW England calls on the government to take immediate action to address this gap in data collection and reporting.”

The number of deaths among white people with learning disabilities from all causes in 2020 was 1.9 times the number in the two previous years. For Asian or British Asian groups it was 4.5 times and for black or black British groups 4.4 times.

These concerning statistics reflect the findings in Lady Lawrence’s recent report, which concludes that decades-old structural racism is leading to disproportionally worse COVID-19 outcomes for Black and Ethnic Minority groups in the UK.

This report highlights that most deaths (82%) of people with learning disabilities from COVID-19 happened in hospital. The University of Bristol’s Learning Disabilities Mortality Review (LeDeR) programme identified the very high percentage (78%) of those people with a learning disability that died in hospital had a DNACPR in place. Concerns about adequate PPE and access to hospital care and treatment were also identified as factors. 

Collette, who is a self-advocate and Learning Disability England spokesperson states: "Public Health England’s statistics confirm that those with learning disabilities are disproportionately affected with increased risk of dying.

“The worry and stress this is causing amongst people with a learning disability, their families and the people who support them is the reason Learning Disability England is campaigning for greater awareness, and letters sent to Parliament for change.

“The challenges of having a learning disability during COVID-19 and the caring obstacles need to be acknowledged and addressed so lessons are learnt from the past and mistakes do not keep being repeated."

Adam Brown was a young Black man with learning disabilities who tragically died from Covid-19. He lived in residential care and fell ill at the beginning of March 2020. His sister Naomi Brown, when asked to comment on this latest report by the BBC, said: "Hearing and reading reports like this doesn't surprise me, it saddens me but it's not surprising.

“People like Adam, people who don't have their own voices to speak for themselves are just left, kept in the dark, disregarded. There's only us, the families, to speak and stand up for people like my brother."

COVID-19 accounted for 54% of deaths of adults with learning disabilities in residential care in the review period - much more than the general population. A similar percentage of people with learning disabilities living in the community COVID-19 accounted for 53% of deaths.

The current situation for people with learning disabilities, their families and loved ones is incredibly worrying. With the second wave of the pandemic and a national lockdown, reports of blanket restrictions preventing visits to care and health settings across the country increases the risk of people’s voices going unheard, which could lead to more deaths over the coming months.

The importance of national guidelines to support Local Authorities and social workers when working with people with learning disabilities and their families during the pandemic cannot be underestimated. This includes information about how best to respond in terms of opportunities for social time, activities, contact and visits to reduce the impact of loneliness and isolation for those who are classed as clinically vulnerable.

Learning Disability England are taking action to stop people more people dying or struggling through COVID-19.

They are calling for the social care taskforce learning disability and autistic people advisory group recommendations to be implemented as part of ending the disproportionate impact on people with learning disabilities.

BASW is leading the #TestAccessRights campaign which seeks changes to national guidance to allow social workers regular and safe access to health and care settings and supported living so that they can carry out their statutory duties on behalf of public bodies in accordance with ethical and regulatory requirements, and protect the human rights of people in care and health settings.