Today saw the publication of two reports looking at the deaths of people who have learning disabilities during the first wave of the coronavirus pandemic.
- The Learning Disabilities Mortality Review Programme (LeDeR) produced an updated analysis of findings from their COVID-19 reviews.
- Public Health England (PHE) have published a report Deaths of people identified as having learning disabilities with COVID-19 in England in the Spring of 2020 which examined data from LeDeR and from NHS England’s COVID-19 Patient Notification System (CPNS) which records deaths in hospital settings.
We were very concerned to read that an analysis of data from the first wave of the pandemic indicates that people who have a learning disability were significantly more likely to die from COVID-19.
Issues around accessing COVID-19 testing for people who have a learning disability, the routine COVID-19 testing of staff supporting people who use services and the provision of accessible information are also highlighted as problematic.
Typically, adults who have Down’s syndrome live with their family or share a house in a supported living setting. It is of great concern to us to note that almost half of those adults who had Down’s syndrome and died from COVID-19 during the first wave, were living in a care home. More than half also had a diagnosis of dementia. Priority must be given to measures to prevent the spread of COVID-19 in these settings, including regular testing of care staff.
We now have a greater understanding of how the virus may affect particular groups of people and we now know that additional vigilance and care is needed in the support of adults who have Down’s syndrome, especially for those over the age of 40. This, together with better treatment interventions, should mean better outcomes for anyone who has Down’s syndrome who does become infected with COVID-19.
The addition of all adults who have Down’s syndrome to the list of those who are clinically extremely vulnerable will help people who have underlying health conditions to take extra care. However, professionals also need to ensure that adults who have Down’s syndrome continue to be treated as unique and individual and that the advisory guidance for those on the list is not imposed arbitrarily or without their consent.
We never lose sight of the fact that behind these statistics is a much loved individual and the loss of anyone who has Down’s syndrome is keenly felt by all of us. We are here to support all those who are concerned or have questions at this time.