Living through a public health emergency while avoiding breaches of human rights, requires a government to protect individuals regardless of their personal characteristics. Yet, this has not been the case consistently in the UK. In March 2020 the Health Protection (Coronavirus, Restrictions) (England) Regulations, or “lockdown” came into force attempting to restrict the spread of covid-19.The UK government considered this necessary in mounting a response to the pandemic based on scientific advice that covid-19 poses a significant public health threat to society. Yesterday, England begun a second month-long lockdown.
When responding to public health emergencies, the value we place on personal dignity must be central to maintaining equilibrium between evidence based policy and the law. However the pandemic has exposed personal experiences of indignity like never before, fuelled by entrenched ageism and repeated government and NHS failure to fully respect the rights of people with disability.
The public health threat is not evenly distributed and people with complex needs are especially at risk from covid-19. Despite government claims about protecting care homes early in the pandemic, this was not the case. In the six months to June 2020, there were 93,475 deaths of care home residents which included an excess of nearly 30 thousand, leading Amnesty International to conclude that the Government’s initial pandemic response had violated the human rights of people in care homes in England. Contributing to this were NHS failures to assure personalised decision making about non-escalation of care. This included reported blanket application of Do Not Attempt Resuscitation (DNACPR) orders, despite reminders that the pandemic must not change established personalised care practice.
Additionally, between April and June 2020, there were over six thousand deaths among recipients of domiciliary care in England, over three thousand higher than expected. Inadequate access to rehabilitation despite instructions to stay at home restricted some people’s social engagement and physical activity, causing deconditioning. For older adults, a period of inactivity can lead to rapid loss of strength, balance, and functional capacity. Notwithstanding resultant increased risk of falls and functional loss, community falls and other services have been largely on hold since March 2020.
For people with learning disability, an early mortality review of covid-19 deaths raised concern that a high proportion of deaths among those with mobility impairment or mental health needs may indicate prejudicial attitudes towards their care. Here too, use of DNACPR decisions requires greater oversight to ensure people with learning disabilities are not being disadvantaged.
Shielding restrictions affecting those with learning disabilities and many older people have halted family visits and added to family distress. The following insight was donated by a family member, and we have heard many similar stories from families of older people:
My sister is in her mid-thirties and suffers from epilepsy and severe learning disabilities. She lives in a care home where the care she has received during the pandemic has been exceptional under difficult circumstances, but we as a family have faced almost insurmountable barriers in being able to see her.
She has no comprehension of why she can neither come home to visit the family nor why we cannot come to visit her. This absence of contact with the family has undoubtedly caused enormous distress adding to her complex behavioural difficulties. The biggest barrier has been the challenge created by care home visiting rules. Notwithstanding we have managed some visits but their infrequency and the distress caused to my sister as a result, may be irreversible.
Stories like this will continue unless the government pays greater attention to maintaining personal dignity through personalised care and support to retain functional ability. But this looks unlikely with NHS pandemic funding to support reablement and recovery following hospital discharge ending in April 2021. In the absence of sustainable community resourcing and rebalancing of social care investment, disruption to personal independence and family life will continue. This is worse for areas of greatest social inequality. Despite increased civic participation, covid-19 has exposed health inequalities exceeding the impact of the disease itself. Long term rehabilitation policy and workforce certainty are needed to target and meet the needs of a less physically active, at risk population, without which we face the double whammy of unsustainable demand on statutory services despite continued excess morbidity and mortality.
In applying lockdown policy, government has interpreted proportionality in terms of balancing risks to life, public service infrastructure, social freedoms and the economy, but so far equilibrium has been elusive and loss of personal dignity has been forgotten. The Human Rights Act 1998 (HRA) gives effect to rights and freedoms guaranteed under the European Convention on Human Rights (ECHR) by incorporating the ECHR into UK law. Government is not only required to take measures to safeguard life (Article 2) but also to protect us from inhuman or degrading treatment (Article 3). Article 8 refers to the right to a private and family life but it is ‘qualified’, meaning it is a right which may be interfered with. To avoid further distress for individuals and communities as a result of lockdown, the government must do more to mitigate its adverse consequences by rapidly bringing the threat to life into balance with preservation of humanity, dignity and family life.
The UK health and care system prides itself on upholding the rights of vulnerable people and we are encouraged to act on our concerns that people might be subject to continuing or escalating abuse. Universal pandemic policies are currently insensitive to the needs of those most at risk and even if we cannot save life, there remains a public duty to protect dignity. Section 6 of the HRA requires that no public authority should act contrary to the European Convention, meaning there is an obligation to protect Convention Rights including Article 3 and Article 8. As the pandemic progresses, government and NHS policy focused on living with covid-19 must therefore avoid perpetuating harm through lost social contact, enforced disability and unjustifiably restricted freedom to choose.
Martin J Vernon is a Consultant Geriatrician, NHS Leader and Clinical Advisor in Greater Manchester and London. He was National Clinical Director for Older People at NHS England for three years until 2019. Follow Martin on Twitter: @runnermandoc
Bridget MacDonald is a consultant neurologist at Croydon University and St George’s Hospitals SW Thames, London.
Jackie Morris is a retired Geriatrician who previously worked as a Consultant at St Mary’s Hospital Paddington, then The Royal Free Hospital NHS Trust and finally St Mary’s Hospital NHS Trust and University College London NHS Trust until 2010.
Dawn A Skelton is an Exercise Physiologist and Professor of Ageing and Health at Glasgow Caledonian University. She is the Chair of the British Geriatrics Society Rehabilitation Group and a member of the Public Health England National Falls Prevention Coordination Group.
Acknowledgement: We thank Benjamin Seifert and Alice Murray for their comments and advice on earlier drafts.
Patient consent obtained.