A pandemic does not abrogate our responsibility to protect the lives and human rights of people with a learning disability, says Keri-Michѐle Lodge
The covid-19 pandemic amplifies the everyday discrimination experienced by people with a learning disability (also known as intellectual disability), yet this group remains glaringly absent from the UK government’s coronavirus strategy.
The symptoms of this neglect have been present throughout the past few months. First, the National Institute for Health and Care Excellence issued a clarification about people with a learning disability only after publishing guidance on using the Clinical Frailty Scale to identify who may be appropriate for critical care, demonstrating that this group is, at best, an afterthought. Worse still are the reports that followed of people in learning disability care homes being told they were unlikely to be prioritised for hospital care if they contracted covid-19.
Clinicians have also had to be reminded that learning disabilities and Down’s syndrome should never be used as a reason for issuing a “do not attempt cardiopulmonary resuscitation” (DNACPR) order, nor should they be used to describe the underlying or only cause of death. This clarification had to be issued in a letter from NHS England and NHS Improvement after concerns were raised of blanket restrictions being applied. For people with a learning disability, covid-19 brings a frightening reminder that their lives may be deemed expendable.
People with a learning disability already experience significant health inequalities, including premature avoidable death. Respiratory conditions are the most common cause of death among people with a learning disability, suggesting that they may be at greater risk of dying from covid-19. However, it was not until June 2020 that data were published by the Care Quality Commission (CQC), which showed that between 10 April and 15 May, 386 people with a learning disability receiving care from CQC registered providers died, compared to 165 people in the same period in 2019—a 134% increase. Covid-19 accounted for 206 of these deaths (more than half).
These figures are sobering, and that’s before we even consider that people who live in their own homes, or who live with family, remain uncounted. In August 2020, a review of 50 people with a learning disability whose death had been attributed to covid-19 highlighted how a high proportion of them had comorbidities, mobility impairments, and/or mental health needs. The author suggested that these factors may lead to an increased risk of covid-19—either because of these people’s need for regular and sustained contact for support, or, more troublingly, because these characteristics “underpin prejudicial attitudes towards care, treatment and judgements about ceilings of care.” Understanding the causes of, and factors contributing to, the deaths of people with a learning disability during the pandemic in all the settings in which they live is urgently required so that lessons can be learnt ahead of any “second wave.”
Access to covid-19 testing is vital to facilitate this. Although regular testing is now available for residents and staff in care homes, this will miss those with a learning disability who live in their own homes with support or with family. Priority testing should therefore be extended to people with a learning disability living in the community and their carers. And, although home testing can be ordered via the government’s website, this is not always accessible to people with a learning disability. NHS England needs to urgently ensure that accessible information about covid-19 and testing, such as that produced by Books Beyond Words, is commissioned and disseminated. In addition, clarity and guidance is needed over what clinicians should do when a person with a learning disability deemed to lack capacity, but who is considered to need covid-19 testing in their best interests, actively resists this.
Coping with the pandemic is challenging for all of us, but this is particularly true for people with a learning disability, who may not understand why certain changes are happening, and who may have even less choice and control over their lives than usual. We need to understand how loss of contact with family and friends, day services, respite, voluntary roles or employment, and grief is affecting the emotional wellbeing of this group. People with a learning disability can express distress behaviourally, and it is already known that they are at risk of being inappropriately prescribed psychotropic medication to control what is seen as “challenging behaviour.” More than ever, this must be monitored to ensure that the commitment to reducing this inappropriate prescribing does not slip.
Scrutinising psychotropic medication use is particularly important for the 2085 children, young adults, and adults with a learning disability in inpatient mental health settings. People in these settings are at risk of other restrictive practices, such as physical restraint and seclusion. In recent years, two undercover documentaries at Winterbourne View Hospital and Whorlton Hall exposed the mistreatment and abuse of people in such settings. Yet the pandemic has led to limits on visits by family and friends, and the suspension of unannounced CQC visits, heightening the risk of abusive cultures developing. Covid-19 does not abrogate the responsibility to protect the human rights of this vulnerable group, and it is vital that unannounced CQC visits resume.
Furthermore, the Care Act easements set out under the UK Coronavirus Act 2020 has given local authorities the power to make decisions about who is most in need of social care and who might need to have their care package reduced or withdrawn. The decisions authorities make as part of this have the potential to leave people with a learning disability without social care services that are crucial to maintaining their wellbeing. Commissioners and local authorities must maintain their commitment to providing appropriate and effective community based support for people with a learning disability to reduce the risk of inappropriate admissions to inpatient facilities.
The response to the covid-19 pandemic highlights that there is still a long way to go to embed the idea that the lives of people with a learning disability matter. As we look forward to emerging into a “new normal,” we must ensure that people with a learning disability are not left behind. And each of us must ensure that in our own clinical practice we strive to address health inequalities and uphold the human rights of people with a learning disability.
Keri-Michѐle Lodge is a consultant in the psychiatry of intellectual disability in Leeds and York Partnership NHS Foundation Trust, and a sibling carer for her brother.
Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: None.