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Inequality: it's life and death

10 December 2020
Volume 29 · Issue 22

Those with learning disabilities are dying of COVID-19 at more than six times the rate of the general population, according to a review undertaken by Public Health England (PHE) (2020a). It is important to note that the data presented is likely to be an underestimation of true figures. Not all COVID-19 deaths among people with learning disabilities are recorded and some of the sources used are incomplete, with eligible deaths being reported at only 65%. Analysis of data came from three key sources: NHS England's COVID-19 Patient Notification System (which records deaths in hospital settings), the Learning Disabilities Mortality Review (LeDeR) and Care Quality Commission death notifications. The total number of deaths in those adults with learning disabilities for the 11 weeks from 21 March to 5 June 2020 was 2.2 times the average number for the corresponding period in the two previous years. The number of deaths in the general population was 1.5 times the average.

COVID-19 deaths among those with learning disabilities were more widely spread across age groups and there were far greater mortality rates among younger adults. People aged 18-34 years, when compared with the general population, were 30 times more likely to die with the virus. COVID-19 affects populations in different ways with a number of inequalities in risk and outcomes (PHE, 2020b). The higher death rates reported may be due to several factors, including the greater prevalence of health problems among those with learning disabilities, such as diabetes and obesity. Down's syndrome, for example, can make people more vulnerable to respiratory infections. Some of those with learning disabilities may have difficulty in recognising symptoms and in following advice provided on testing, social distancing and measures in place for infection prevention and control. It might also be harder for those who care for people with learning disabilities to appreciate symptoms if these cannot be communicated (PHE, 2020a). All of these issues imply that people with learning disabilities are likely to have been more vulnerable than others during the various stages of the pandemic (Courtenay and Perera, 2020).

The data show how the Government has failed in its duty to protect one of the most vulnerable groups in our society. For many years there has been underinvestment in social care, leaving most people with a learning disability with no support to help understand constantly changing guidance on staying safe and accessing testing. All of these factors will have had an unacceptable impact on those with a learning disability, exacerbating already unacceptable levels of premature death and health inequalities.

Those with learning disabilities deserve better than this—they need to be protected from the increased risk of COVID-19 and of dying from it. The lives of people with a learning disability are still not treated as equal and this group remains glaringly absent from the UK Government's coronavirus strategy. Adults with Down's syndrome have now been added to the clinically extremely vulnerable list. We must not leave people with a learning disability behind, we must all ensure that we strive to address health inequalities and uphold their human rights. Explaining the changes that are happening to many people with learning disabilities can be difficult. Those with mild or moderate learning disabilities will be able to understand verbal communication, but this may not be the case for those with more severe learning disabilities. These are challenging times. In line with the Equality Act 2010, the nurse must remember that all people with disabilities are entitled to reasonable adjustments to how their health care is delivered. With appropriate intervention, the impact of COVID-19 on people with learning disabilities and their families can be reduced.