What happened during the first wave of Coronavirus and what can be done about it
In the first wave of the Coronavirus pandemic, mortality rates for people in care homes were shockingly high. Many people living in residential care and nursing homes have cognitive impairments that make it hard for them to agree to their living conditions. In the spring and summer of this year, rights-based legal safeguards designed to protect people seem to have been ignored or set aside. The NHS and adult social care services are currently bracing themselves for a second wave. This article asks whether the safeguards are likely to be more robust this time around, and what can be done to ensure people’s rights are upheld in the future.
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According to the Office for National Statistics, there were 19,394 Covid-related deaths among care home residents between 2/3/20 and 12/6/20. About half the people in this group were recorded as having a pre-existing condition of dementia. Many will have been assessed as not having the mental capacity to decide where to live, and consequently should have been subject to Deprivation of Liberty Safeguards (DOLS).
DOLS were introduced in 2009 after a landmark case in the European Court of Human Rights. Deprivations of liberty can be authorised by local authorities where they are proportionate, where there is no reasonable alternative, and critically where they are in people’s best interests. Local authorities have always lacked the resources to process applications, and backlogs began to build up as soon as the safeguards were introduced. Another legal ruling in 2014 held that many more people were being deprived of their liberty than had initially been supposed, putting even more pressure on the system. In 2019 the law was amended to introduce a new, speedier system, though this was contentious because it allowed care home managers a greater role in deciding whether deprivations were necessary or proportionate. This had been due to come in this month (October 2020), but implementation has now been put back to April 2022.
During the first wave of the pandemic, the larger numbers of people moving into care homes should have resulted in a bigger figure for DOLS applications. Instead, the Care Quality Commission (CQC) recorded a 31% reduction in DOLS applications between April and June 2020 compared to 2019. It seems that the requirement to ensure that restrictions were in people’s ‘best interests’ was being quietly ignored. As well as considering the rights of the 25,000 or so people who were discharged from hospital to care homes with Coronavirus, it’s also important to consider the risks to the much larger number who were already resident. As care home staff struggled to prevent cross-contamination with inadequate PPE and high levels of staff sickness, many residents were confined to their rooms in accordance with government advice. The Mental Capacity Act 2005 may only be used to confine people in their best interests; where the deprivation is for public health purposes different provisions should have been used. Research by Dr Lucy Series showed that public health provisions were only applied a handful of times. The point here is not to second-guess the actions of staff who were clearly doing their best to manage under very difficult circumstances, but to ask ‘What’s the point of legal safeguards if they can just be ignored?’.
In June the Equality and Human Rights Commission recommended that the “ … Government should urgently undertake or commission a review into deaths in care homes during the pandemic, in line with its equality and human rights obligations…”. One would have expected that in the pause afforded after the first wave of infections, lessons would have been learned and changes made. Instead we have an adult social care winter plan that promises (but has not yet developed) a “…designation scheme with the CQC for premises that are safe for people leaving hospital who have tested positive or are awaiting a test result.” It seems that the government is anticipating that people with the virus will be discharged into care homes, but a process for this to be safely managed is not yet in place. At the same time revised guidance that suggests that where new restrictions are imposed to prevent cross-infection “…in many cases [they] will not be…” new Deprivations of Liberty. However, considering the significantly greater risk of mortality under these circumstances, it seems at least reasonable to question whether the original judgements about what is in a person’s best interests would still be valid.
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The specific issue of DOLS is one of a large number where human rights seem to have been set aside during the initial Coronavirus outbreak. A report from Amnesty International published earlier this week found that the “…UK government, national agencies, and local-level bodies have taken decisions and adopted policies during the COVID-19 pandemic that have directly violated the human rights of older residents of care homes in England—notably their right to life, their right to health, and their right to non-discrimination.” Early on in the Pandemic there was concern that the frailty scale being used to decide whether people would get life-saving treatment was being used inappropriately with younger disabled groups, leading DHSC to issue urgent ‘clarification’. Last week the CQC was asked by DHSC to review the way that Do Not Attempt Resuscitation (DNAR) notices were used by clinicians. ONS data re-analysed by Prof. Chris Hatton shows in-patients with autism and learning disabilities were subjected to more restraints during the pandemic. Organisations such as Inclusion London, Inclusion Scotland and Disability Rights UK have highlighted linked concerns among other groups of disabled people. During the outbreak the majority of disabled people experienced difficulties accessing basic care, medicines and food. Many of these organisations have joined the EHRC and Amnesty in calling for an inquiry into the events of this year, and ultimately for stronger legal guarantees.
Another important lesson relates to funding. The lack of social work capacity for DOLS authorisations, wider under-staffing and poor pay in the care sector, and the absence of alternatives to ‘congregate’ care have all contributed to the events described in this article. Adult social care services have been subjected to growing demands and reduced resources for over a decade. Why is it that vital local social care services are still facing massive financial shortfalls at the same time that central government is putting record sums into the NHS and privatised test-and-trace services? An urgent solution to funding in adult social care is also a necessary component of any solution. Many argue that this will only be politically viable when social care is seen not as a destination but as a vehicle for helping the people we are and the people we love to lead rich and full lives. These three strands – a brighter vision, a new financial solution, and stronger support for human rights – can form a common ground for campaigning and activism that can help us future-proof social care against similar crises in the future.
Jon Hyslop, Oxfordshire Branch, 19/10/20