6Data on Covid-19 infections and deaths
42.On 7 May we wrote to Rt Hon Matt Hancock MP, the Secretary of State for Health and Social Care, to ask him to commit to publishing the number of those who are autistic and/or who have a learning disability who have contracted and have died from Covid-19. In addition, we asked to be provided with figures, broken down by age group, on the number of those who are autistic and/or who have learning disabilities in mental health inpatient units (both mainstream and specialist units) who have i) contracted and ii) died from Covid-19.37
43.In her response on 16 May, Helen Whately MP, Minister for Care, notified the Committee that on 14 May, for the first time, NHSE had released data collected on the number of people with learning disabilities and/or autism who had died as a result of Covid-19 in hospital.38 This has been published weekly since then and as at 26 May, the figure stands at 477 people.39 On 18 May, a second data set was published showing the number of deaths in any location reported to the Learning Disabilities Mortality Review programme where the person notifying the death has indicated that Covid-19 is suspected or confirmed as the cause of death. The number of deaths recorded in this data set is 530.40 Professor Chris Hatton from Lancaster University has analysed these and other relevant data sources and reached the stark conclusion that “[p]eople with learning disabilities are at much greater risk of death from COVID-19 than the general population, particularly at times when pandemics are at their peak.”41
44.At the Committee’s oral evidence session on 18 May, Ray James was able to tell us that no deaths of children or young people under the age of 25 had been reported in specialist in-patient units during the Covid-19 outbreak and there had been fewer than five deaths of people over the age of 25.42 Following the session NHSE wrote to the Committee and notified them that between 5 and 10 people died as a result of Covid-19 following transfer to an acute hospital. None of these people were aged under 25.43 NHSE has not to date, been able to provide us with data on the number of people diagnosed with Covid-19 in specialist inpatient settings.
45.It is essential that we have comprehensive and accessible data about the number of those who are autistic and/or learning disabled who have contracted and died of Covid-19. This must include a focus on those in detention, for whom the state has heightened responsibility for their right to life. The data must be presented to show the number of those who have died in acute hospitals, having been transferred from other settings, and be published on a weekly or daily basis and be broken down by age.
37 Letter to Rt Hon Matt Hancock MP, Secretary of State for Health and Social Care, requesting information on people who are autistic and/or who have learning disabilities in mental health inpatient units who have contracted and died from COVID-19, dated 7 May
38 Letter from Helen Whately MP, Minister of State for Care, Department of Health and Social Care, to Chair, regarding data on impact of COVID-19 on people with Learning Disabilities and Autism, dated 16 May 2020
39 NHS England, COVID 19 total announced deaths 26 May 2020 – weekly tables
40 NHS England, Covid-19 deaths of patients with a learning disability notified to LeDeR, 18 May 2020
41 Professor Chris Hatton, What we know (so far) about the deaths of people with learning disabilities in England during COVID-19 (2 June 2020)
43 Letter to Rt Hon Harriet Harman MP, Chair, from NHS England and NHS Improvement, regarding follow up information, dated 27 May 2020
Published: 12 June 2020