Written Evidence Submitted by Amnesty International

(CLL0004)

Summary of key recommendations

The UK Government should immediately:

• Establish a full independent public inquiry without further delay, with urgent priority given to the commencement of an immediate interim phase focussing on the impact of policies and decisions made on the rights of older people in care homes, which should issue findings and recommendations by end of November 2020.
• Ensure meaningful visits to care homes can take place, including through provision of regular testing for visitors
• Order an immediate review of every single ‘Do not attempt CPR’ order added to care homes residents’ medical files since 1 March 2020, to ensure that any which were imposed without due process are removed
• Urgently ensure an adequate mechanism is put in place to assess the capacity of care homes that are asked to take in COVID-19 positive patients discharged from Hospital, to deliver appropriate infection prevention and control, including adequate infrastructure, systems and staff – to ensure effective protection of residents and staff

The UK Government should also ensure:
 

• Adequate quantity, quality and continued supply of PPE for care homes to enable them to comply with national guidance and ensure all staff have undertaken training on its purpose and correct use.
• Full access for care home residents to the NHS services to which they are entitled – including access to hospital.
• Adequate representation and involvement of the social care and care home sector in the decision-making processes related to matters which impact care home residents at all levels.
• Empowerment of care homes to develop visiting policies which respect and fulfil residents’ human rights and which give voice and agency to them, their families, and/or their legal guardian, while ensuring their safety and that of their fellow residents.
• Full transparency in the collection and publication of all relevant data related to the deaths of older people in care homes during the COVID-19 pandemic.

Amnesty International UK

1)             Amnesty International UK is a national section of a global movement of more seven million people. We represent more than 600,000 individuals in the UK. We undertake research and action focused on preventing and ending grave abuses of all human rights enshrined in the Universal Declaration of Human Rights and other international human rights instruments. We are independent of any Government, political ideology, economic interest or religion.

Overview

2)      Amnesty International is conducting research to assess the impact of decisions, policies, and decision-making processes at the national and local level on the human rights of older people in care homes in England, in the context of the COVID-19 pandemic.

3)      As well as analysing relevant available documentation, Amnesty International has interviewed  relatives of older people who either died in care homes or are currently living in care homes in different parts of England; owners, managers and staff of care homes in different parts of the country; staff and volunteers working in non-profit organisations advocating on behalf of care home residents and staff; members of parliament and local authorities, and legal and medical professionals.

4)      In a report[1] published on 4 October 2020, Amnesty concluded that the UK government made 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. At the time of writing Amnesty is currently engaged in follow up analysis and remains concerned that not only have those decisions that directly violated rights during the first wave not been investigated or addressed, but that in some cases the same policies and/or practices – which had disastrous outcomes six months ago – are being repeated. Amnesty is particularly concerned to understand that infected patients could be sent into care homes without independent, professional assessment that those care homes are sufficiently well equipped to ensure full protection of both residents and staff.

5)      It is imperative that the UK government—and in particular the Department for Health and Social Care— take concrete measures to investigate what went wrong, hold accountable those responsible, and learn the necessary lessons. It must put in place mechanisms (such as those detailed above) to avoid any recurrence of these problems, and to ensure that going forward the rights and dignity of older people are placed front and centre of decisions and policies relating to COVID-19 and future pandemics. It must also lift certain disproportionate restrictions that currently impede care home residents from exercising their rights to receive visits and meaningfully interact with the outside world.

Introduction

6)      Between 2 March and 12 June 2020, 18,562 residents of care homes in England died with COVID-19, representing almost 40% of all deaths involving COVID-19 in England during this period. During the same period, 28,186 “excess deaths” were recorded in care homes in England, representing a 46% increase compared with the same period in previous years.

7)      Amnesty’s assessment is that the UK government knew from the outset that COVID-19 presents a disproportionate risk of serious illness and death to older people, especially those with underlying health conditions[2].Risk of death estimates made in early March showed infection fatality rates ranging from 0.01% for people under 20 to 8% for people over 80[3].

8)      The UK government was clearly aware that the 400,000 residents of care homes in the UK, many of whom live with multiple health conditions, physical dependency, dementia and frailty, were at exceptional risk to coronavirus[4]. Yet at the height of the pandemic, despite this knowledge, it failed to take measures to promptly and adequately protect care homes. Contrary to the claim by the Secretary of State for Health and Social Care that a “protective ring” was put around care homes “right from the start,” a number of decisions and policies adopted by authorities at the national and local level in England increased care home residents’ risk of exposure to the virus—violating their rights to life, to health, and to non-discrimination.

9)      These include, notably:

1. Mass discharges from hospital into care homes of patients infected or possibly infected with COVID19 and advice that “[n]egative tests are not required prior to transfers / admissions into the care home”.
2. Advice to care homes that “no personal protective equipment (PPE) is required if the worker and the resident are not symptomatic,” and a failure to ensure adequate provisions of PPE to care homes.
3. A failure to assess care homes’ capability to cope with and isolate infected or possibly infected patients discharged from hospitals, and failure to put in place adequate emergency mechanisms to help care homes respond to additional needs and diminished resources.
4. A failure to ensure regular testing of care home workers and residents.
5. Imposition of blanket Do Not Attempt Resuscitation (DNAR) orders on residents of many care homes around the country and restrictions on residents’ access to hospital.
6. Suspension of regular oversight procedures for care homes by the statutory regulating body, the Care Quality Commission (CQC), and the Local Government and Social Care Ombudsman.
    

10) Amnesty recognises that the Department of Health and Social Care has taken some steps to address some aspects of the above concerns, in particular:

1. Commitment to test i) patients before discharge ii) care home staff weekly and iii) residents monthly
2. Assurances on the provision of PPE
3. Publication of the Winter Care Plan[5] (and its associated additional funding) and updated visiting guidance[6]
4. Instruction to the Care Quality Commission to review how Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions were used during the coronavirus pandemic[7]
5. Announcement of a pilot project to test relatives of care home residents to enable visiting[8]

11) However few of these commitments go far enough or are concrete enough to properly ensure that the rights of older people in care homes are protected during a second wave and, moreover, Amnesty is aware of reports that new circumstances and policies are in place which would similarly put care home residents at increased risk during the second wave of the pandemic.

12) For instance, there seems to be renewed pressure on care homes to accept COVID-19 patients discharged from hospital – even though no mechanism is in place to ensure that the care homes who accept these patients have the necessary equipment, space, or training to effectively separate those infected and protect both residents and staff.

13) The UK government should urgently ensure an adequate mechanism is in place to assess the capacity of care homes that are asked to take in COVID-19 positive patients discharged from Hospital, to deliver appropriate infection prevention and control, including adequate infrastructure, systems and staff. In order to ensure care homes can provide adequate protection for other (non-infected) residents and staff, they must have, for example, an adequate number and adequately trained staff force to effectively isolate new or returning residents; and they must be in possession of a sufficient quantity and adequate quality of PPE.

14) The PPE which care homes have consists of masks, gloves and aprons. Whereas in hospital, staff who care for COVID-19 patients wear much more protective PPE (full gowns, vizors etc.). If care home staff are asked to care for COVID-19 positive patients, they must be equipped with adequate PPE to ensure their and the other residents’ safety. While some may argue that care homes can decide for themselves if they are able and equipped to receive and care for COVID-19 patients discharged from hospital, the experience of the past few months suggest that this is not always the case – as many care homes which accepted untested, discharged patients suffered COVID19 outbreaks. Moreover, current financial pressures on care homes, many of which currently have many empty beds – which means diminished earnings – and increased expenses, may push some care homes to take risks they are not sufficiently equipped to mitigate. 

15) Local authorities which ask care homes to accept COVID-19 positive or potentially positive patients/residents should ensure that these care homes are in fact fully equipped to protect residents and staff from incoming infected people.

16) Unless full consideration is given – in a public, independent and transparent manner – to the above issues the safety of care home residents and staff and the protection of their rights may be put at risk.

17) Given the urgent need for lessons to be fully learnt now, as a second wave appears to be upon us, the UK government should establish a full independent public inquiry without further delay, with urgent priority given to the commencement of an immediate interim phase focussing on the rights of older people in care homes, with recommendations made by the end of November 2020.

18) There is precedent for an urgent interim review to commence once a full public independent inquiry (which could take years to complete) is confirmed. The interim phase of the Taylor Inquiry into the Hillsborough stadium disaster reported within three and a half months – the disaster occurred on 15 April 1989. The Home Secretary established an Inquiry and appointed Taylor LJ on 17 April 1989. Taylor LJ sitting with two expert assessors started hearing evidence on 15 May 1989 and the interim report was delivered on 1 August 1989, with recommendations to make stadiums safer before the start of the next football season.  

Ensure meaningful visits to Care Homes can take place, including through provision of regular testing for relatives

19) All the families interviewed by Amnesty International whose relatives are currently in care homes have said that the current restrictions on visits are excessive and make little sense.

20) Achieving the right balance between allowing care homes residents meaningful contact with their families and managing the risk of infection is undoubtedly challenging. A zero-risk solution does not exist, as even in the absence of family visits, residents are in close daily contact with care home staff who live in the community and are currently only tested once a week. Care home residents should not be subject to blanket restrictions on their private and family life, except for restrictions which are appropriate to their specific circumstances based on individualised risk assessments.

21) While the Government’s Winter Care Plan and updated guidance on visiting recommends localised, risk-assessment based decision making processes, this has not changed the reality that many care homes are still not allowing meaningful visits. Moreover, the guidance states that – other than in exceptional circumstances – residents should only nominate one visitor which presents significant ethical dilemmas: how can anyone be expected to choose between two or more children, or between their partner and their children. Further, the Winter Care Plan states that visits must be supervised, which is insulting and affects the right to private and family life.

22) Amnesty welcomes the Care Minister’s announcement on 12 October 2020 of her intention to launch a pilot which would see visitors to care home residents tested on a weekly basis. While this is a step in the right direction, many residents have already been isolated for months and many relatives and care providers have expressed concern about the severely damaging impact of that on the health of their loved one, including the family member of a care home resident in the North of England who told us:

23) “After not seeing mum for months I found her terribly weakened, both physically and mentally. We were sitting in the garden several meters apart and she was crying all the time. Mum doesn’t have dementia and before Covid used to have a lot of visitors, friends who live nearby visited every day. Now she has lost the will to live.”

24) Many relatives and care staff have expressed the urgency of ensuring meaningful visits can take place, for example the daughter of a Care Home Resident in Dorset said:

25) “First they endangered older people in care homes…[now they] don’t look at the damage isolation is causing…Isolation is killing people slowly and making their lives not worth living in the meantime”

26) While recognition from the government that testing visitors to enable visits is important, a pilot without even a start date, let alone timeline for completion and national roll out, is not an adequate solution to this seriously damaging problem.

27) The UK government should urgently ensure meaningful visits to care homes can take place across the country, including through provision of regular testing for visitors.

Order an immediate review of all ‘Do not attempt CPR’ orders imposed without due process

28) Throughout the pandemic, concerns about the inappropriate use of Do Not Attempt Resuscitation (DNAR) forms have been repeatedly raised. Any decision regarding DNARs must be made on an individual basis by the patient involved and/or their families where they have legal guardianship, ensuring they have the necessary information to make an informed decision.

29) As stated by the Joint Committee on Human Rights[9] “The blanket imposition of DNACPR notices without proper patient involvement is unlawful. The evidence suggests that the use of them in the context of the Covid-19 pandemic has been widespread”.

30) Indeed, a family member from Lancashire told us:

31) “The nurse from the GP surgery rang me up to say they decided mum is DNR. I asked why and she said ‘we did this across the home’, and I said ‘no, this should be done on individual cases and I don’t agree to it’”

32) Amnesty has documented the blanket application of DNARs in Sussex, Derbyshire, Greater Manchester and Somerset. The fact that a number of Clinical Commissioning Groups (CCG) in different areas of the country appear to have issued similar guidance indicates that pressure was being exerted from the acute sector to free-up hospital beds with little concern for the consequences on the health and lives of those in other settings, including care homes, or for equal treatment in access to care.

33) Discussing how the CCG guidance came to be issued, a senior local figure told Amnesty that it was clear from conversations he had with senior figures in the local health system that they were under “an enormous amount of pressure from upwards” and that they were given instructions orally which were not sent in writing or would be worded differently when sent in writing. This would explain why so many CCGs and GPs asked care homes to put DNAR instructions on their residents in a blanket approach even though there is no written record of any such government policy.

34) Amnesty welcomes the Care Quality Commission announcement on 12 October[10] that it will review how Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions were used during the coronavirus pandemic. The scope and methodology of this work are “being developed at pace” but it is expected to look at people’s experiences in care homes, primary care and hospitals. Interim findings are expected to be reported later this year with a final report in early 2021.

35) Of course, this review is essential and welcome – but in the meantime, countless DNRs remain in people’s files that have been imposed in a blanket, unlawful manner without consultation. Many of those people could get ill over the winter.

36) As well as investigating how it happened that so many blanket DNRs were imposed, the UK government should instruct that every single DNAR form added to the medical files of care homes residents since 1 March this year must be immediately reviewed individually in proper consultation with the individuals, their family and/or advocate, to ensure no-one who gets ill over the winter ends up not being resuscitated without proper process.

Conclusion

37) Amnesty’s research has concluded that decisions made and policies adopted at the local and national level during the COVID-19 pandemic 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.

38) Unfortunately those rights continue to be at risk and many Residents’ right to family and private life continue to be impacted, with the restriction on meaningful visits from loved ones and consequent isolation having severely damaging effects on their emotional, mental and physical health.

39) The government does not appear to have learnt all the necessary lessons essential to ensure the rights of older people in care homes are protected during a second wave, and therefore the immediate establishment of an independent and public inquiry with commencement of an interim review is vital.

(October 2020)