Given the disproportionately negative impact of covid-19 on people with an intellectual disability, they should be prioritised in the UK’s vaccination programme, say Keri-Michèle Lodge, Christian Brown, and Sheila Hollins
The covid-19 pandemic continues to magnify the unacceptable health inequalities faced by people with a learning (or intellectual) disability (ID). The latest incarnation of this group’s seeming invisibility to policy makers is the decision not to prioritise them adequately during the vaccination programme.
The most recent full report of the Learning [Intellectual] Disabilities Mortality Review (LeDeR) Programme, based on data from 2019 (pre-pandemic), showed that people with ID died on average 25 years earlier than the general population. While 8% of deaths in the general population were considered to have been from “treatable medical causes,” a staggering one third of deaths of people with ID were treatable. These findings are not new. Twenty five years ago, one of us (SH) found that people with ID were nearly 60 times more likely than the general population to die before the age of 50.
Last year Public Health England found that between the ages of 18-34, the death rate of people with ID from covid-19 was 30 times higher than for people in the same age group without a disability. The overall death rate for people with ID was estimated to be up to 6.3 times higher than the general population. This has been compounded by the inappropriate application of blanket “do not attempt cardiopulmonary resuscitation” orders on people with ID during the pandemic. Yet despite clear evidence of the disproportionately negative impact of covid-19 on people with ID, this group is not being prioritised for vaccination.
The Joint Committee on Vaccination and Immunisation (JCVI) considers that prioritisation should “maximise benefit and reduce harm” and “mitigate health inequalities.” Yet government policy (based on JCVI recommendations) has not prioritised covid-19 vaccination for all people with ID. People living in care homes for older adults have been made the first priority, yet people with ID, despite sharing many of the same risks as this group from living in congregate settings, have been treated in a more haphazard way. People with Down’s syndrome are deemed “extremely clinically vulnerable” and appear fourth on the vaccine priority list, alongside adults aged 70 years and over. People aged 16-64 with underlying health conditions that put them at higher risk of serious disease and mortality are ranked sixth—this includes people with a severe or profound ID, but not those with mild or moderate ID.
As it stands, most people with ID are a lower vaccination priority than healthy adults aged 65 and over. This prioritisation has been established despite the fact that a person with ID may find it difficult to understand and follow guidance on hand hygiene, social distancing, and wearing a face covering, or that their day to day care arrangements may provide opportunity for viral transmission via peripatetic care staff. We also know that people with ID may experience difficulties accessing in-person or virtual healthcare for covid-19 symptoms as a consequence of diagnostic overshadowing (whereby their symptoms are erroneously attributed to their ID) and discriminatory attitudes. Given all this, it is difficult to justify why a person with ID should be a lower priority for vaccination than an otherwise healthy older adult without ID.
Even before the pandemic, fewer than two in five people with ID lived beyond 65 years of age. And research consistently shows that people with ID are affected by, and die from, covid-19 at a younger age than those in the general population. A vaccine policy which does not account for this is discriminatory; it has failed to make reasonable adjustments as required under the Equality Act 2010, with an overemphasis on chronological age.
We suggest that the government should follow the example of Germany, where people with ID, along with all employees of institutional services or community services in the disability sector and all people aged 70 or older, are being offered vaccination as a priority.
As in Germany, we think it’s important that all people with ID are part of these prioritisation efforts. People with a mild or moderate ID face similar health inequities to those with a severe or profound ID. Furthermore, identifying people with a severe or profound ID within primary care is not a straightforward task. GPs maintain registers of people with ID to offer annual health checks and influenza vaccinations because of the recognised additional health risks they face. Of the 1.5 million people with ID, it is estimated that a subset of around 200 000 appear on existing GP registers. However, the current covid-19 vaccination priority criteria would require GPs to identify a further subset of around 20 000 people with severe or profound ID within this group of 200 000. GPs may not have the necessary information to accurately stratify by severity of ID, reflecting the unreliable diagnostic data in primary care, and this would be a time consuming task for our already overstretched primary care colleagues. We’d argue that the most effective solution, using existing infrastructure, is to offer the covid-19 vaccination to all people on existing GP registers of people with ID.
The decision to prioritise a group for vaccination is not simply a scientific exercise, it is an ethical one too. Given the profound health inequalities already faced by people with ID, everyone on existing GP registers of people with ID, along with their carers, should be prioritised in the covid-19 vaccination programme.
Keri-Michèle Lodge is a consultant in psychiatry of intellectual disability at Leeds and York Partnership NHS Foundation Trust.
I have read and understood BMJ policy on declaration of interests and declare the following interests: sibling carer for adult with learning disability.
Christian Brown is an ST6 in forensic psychiatry at South West London & St George’s Mental Health NHS Trust.
I have read and understood BMJ policy on declaration of interests and declare the following interests: none.
Sheila Hollins is an independent member of the House of Lords and president of the Royal College of Occupational Therapists, UK.
I have read and understood BMJ policy on declaration of interests and declare the following interests: family carer for adult with learning disability.