Older people in residential social care
Friday 24 July 2020
Introduction
Summary
Recommendations
(1) 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.[3] This should include the impact of policies on hospital discharge, care home admissions, testing and PPE, the causes of ‘excess’ deaths in this period, regional variations in how care homes have been affected and the differential impact on groups sharing protected characteristics. Older people, their relatives and representative bodies must be meaningfully consulted and engaged in establishing and directing the review. The findings should be used on an ongoing basis to identify and implement changes in policy and practice to ensure older people’s rights are protected, both in the immediate term and in preparing for a potential second wave.
(2) The Government should continue to take urgent steps to ensure that decisions about the health and care of older people in residential settings - both in individual cases and at the national policy level - are made in collaboration and consultation with older people and their representative organisations, and are supported by clear, accessible and consistent guidance that fully complies with human rights standards, including the principles of individual autonomy and non-discrimination.
(3) The Government should assess whether restraint[4] has increased during the pandemic and work with providers, NHS Digital and the CQC to identify what additional support should be made available to avoid its use and ensure transparency and effective monitoring and oversight. Guidance on avoiding the use of restraint should build on existing resources and good practice and reflect the principles set out in the Commission’s human rights framework for restraint. Particular consideration should be given to groups who have impairments or characteristics that increase the risk of harm.
(4) The CQC should ensure effective and ongoing oversight for care homes during the pandemic, expand inspections as far as possible with priority to those institutions where standards are most at risk (as informed by previous inspections and local intelligence gathering), and reinstate full inspections as soon as it is safe to do so. The CQC should further consider whether any immediate steps are required beyond existing routes to ensure that residents, relatives and staff can report concerns while outside visits are restricted.
(5) The Government should amend guidance on care home visits to prohibit blanket restrictions and ensure all decisions are based on individual risk assessments. The guidance should be kept under review and updated to allow further relaxations to visiting policies where it is safe to do so. The Government must ensure there are mitigations in place so that care home residents can maintain contact with their loved ones in the case of further national or local lockdowns.
(6) The Government should take immediate steps to investigate and address the reasons for the drop in applications for deprivation of liberty safeguards (DoLS) and work with providers to ensure older people who lack capacity can access independent advocacy. The Government should remind care home providers that the requirement to apply for DoLS remains in place where a deprivation of liberty is strictly necessary and the individual cannot consent to restrictions. Planned reforms to DoLS should be brought forward as soon as possible, and should emphasise supporting people to make decisions about their own care and treatment as far as possible.
(7) The Government should bring forward proposals for the long-term reform of social care as soon as possible, including residential and community-based care for older people and disabled people of all ages. Proposals for reform must be informed by human rights principles including dignity, respect and equality, backed by sufficient resources and developed in close consultation with older people, disabled people, care providers and representative organisations, and with recognition of disabled people’s right to live independently.
A. The right to life
B. The right to health
C. Freedom from ill-treatment
D. The right to a private and family life
E. The right to liberty
F. The future of social care
Further information
The Equality and Human Rights Commission is a statutory body established under the Equality Act 2006. Find out more about the Commission’s work on our website.
For more information, please contact:
Policy lead:
Lorel Clafton
Lorel.Clafton@equalityhumanrights,com
020 7832 7800
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[1] Our evidence relates to the UK Government and the impact on care homes in England (responsibility for social care is devolved in Wales and Scotland). A number of working age and younger disabled people also live in care homes or other long-term care facilities where the issues raised by the pandemic are likely to be similar. Our previous submission to the Committee covers the impact of coronavirus on social care in the community and on disabled people’s right to live independently, and our evidence to the Women and Equalities Committee covers the impact of the pandemic on older people more broadly.
[2] For example 70 per cent have dementia, 60 per cent have mental health problems and 75 per cent have hearing loss, see Age UK (2019), Later life in the United Kingdom 2019.
[3] We have also recommended in our evidence to the Women and Equalities Committee, in relation to the impact of the pandemic on disabled people, that the Government undertake or commission a review into the disproportionate deaths of disabled people, including deaths in care homes.
[4] We define restraint broadly as any act carried out with the purpose of restricting an individual’s movement, liberty and/or freedom to act independently, including chemical, mechanical and physical forms of control, coercion and enforced isolation.
[5] Articles 2 and 3 of the European Convention on Human Rights (ECHR), incorporated into domestic law by the Human Rights Act 1998.
[6] Council of Europe (2020), Respecting democracy, rule of law and human rights in the framework of the COVID-19 sanitary crisis, a toolkit for member states, pp4-5.
[7] Article 14 ECHR requires that all rights in the Convention are protected and applied without discrimination, including on the basis of age.
[8] Council of Europe (2020), Respecting democracy, rule of law and human rights in the framework of the COVID-19 sanitary crisis, a toolkit for member states, p5.
[9] ONS (2020), Deaths involving COVID-19 in the care sector, England and Wales: deaths occurring up to 12 June 2020 and registered up to 20 June 2020 (provisional), figure 2; and ONS (2020), Comparison of weekly death occurrences in England and Wales: up to week ending 26 June 2020, figure 1. There were reportedly 46,604 deaths involving COVID-19 in England up to 12 June, including 18,562 among care home residents (39.8 per cent). This includes care home residents who have died in care homes and in hospitals. The ONS definition of "deaths involving COVID-19" is those deaths that had COVID-19 mentioned anywhere on the death certificate, whether as an underlying cause or not.
[10] ONS (2020), Deaths involving COVID-19 in the care sector, England and Wales: deaths occurring up to 12 June 2020 and registered up to 20 June 2020 (provisional), figure 12. There were 57,588 deaths in care homes from 2 March to 12 June (including deaths related to COVID-19), compared with an average of 31,357 deaths each year for the same period from 2015 to 2019.
[11] Ibid, figure 8. For example, for men aged 65-74 in England the mortality rate in COVID-19 related deaths was 5,392.1 per 100,000 people for care home residents, compared with 133.1 per 100,000 people for non-care home residents. It is not clear to what extent the characteristics of the care home population, including prevalence of comorbidities and greater clinical frailty, explain these differences.
[12] CQC (2020), CQC publishes data on deaths in care settings broken down by ethnicity. While the vast majority of all reported deaths across adult social care were White people, the proportion of deaths in care homes due to confirmed or suspected COVID-19 was higher for Black people (54 per cent) and Asian people (49 per cent) compared to White people (44 per cent). Note that CQC and ONS use different recording methods and the data are not directly comparable.
[13] ONS (2020), Deaths involving COVID-19 in the care sector, England and Wales: deaths occurring up to 12 June 2020 and registered up to 20 June 2020 (provisional).
[14] See: NHS England and NHS Improvement (17 March 2020), Important and urgent – next steps on NHS response to COVID-19; NHS (19 March 2020), COVID-19 hospital discharge service requirements; and Department for Health and Social Care (16 April 2020), COVID-19: our action plan for adult social care.
[15] Testing capacity was not extended to care homes until mid-April and some providers have continued to raise concerns about delays and difficulty accessing tests, see eg National Care Association (2020), Covid 19 statement from the Board of National Care Association, and National Care Foundation (5 May 2020), NCF survey finds that only 22 per cent of social care workers have been able to access testing.
[16] Social care providers were expected to source their own PPE supplies, see National Audit Office (2020), Readying the NHS and adult social care in England for COVID-19. Care England has highlighted that PPE requirements extend to everyone who interacts with the care system and not just front-line staff, see Care England (2020), Questions arising out of the ‘Admission and Care of Residents during COVID-19 Incident in a Care Home’ guidance.
[17] Article 14 ECHR. The Equality Act 2010 prevents discrimination on the basis of age among the 9 protected characteristics.
[18] Providers have highlighted access to regular testing and PPE among the key issues they face, see Care Provider Alliance (2020), Targeted CPA survey, business continuity.
[19] Department for Health and Social Care (16 April 2020), COVID-19: our action plan for adult social care.
[20] The King’s Fund (2020), Deaths from Covid-19 (coronavirus): how are they counted and what do they show?.
[21] CQC (2020), CQC publishes data on deaths in care settings broken down by ethnicity.
[22] CQC (2020), Our data from COVID-19, insight issue 2.
[23] We have also recommended in our evidence to the Women and Equalities Committee, in relation to the impact of the pandemic on disabled people, that the Government undertake or commission a review into the disproportionate deaths of disabled people, including deaths in care homes.
[24] The right to health is recognised under article 12 of the International Covenant on Economic, Social and Cultural Rights.
[25] Council of Europe (2020), Respecting democracy, rule of law and human rights in the framework of the COVID-19 sanitary crisis, a toolkit for member states, footnote 17.
[26] NHS (2020), COVID-19 prioritisation within community health services. Current Government guidance advises that routine non-essential medical appointments should be postponed, see Admission and care of residents in a care home during COVID-19, version 2.
[27] See footnote 9. Experts suggest data on deaths directly attributed to COVID-19 underestimate the impact of the pandemic on care home residents. Indirect causes of deaths linked to the pandemic could include people not seeking or receiving medical care as a result of fear of infection, a concern not to burden the NHS, or lack of access to care that is normally provided. See Adelina Comas-Herrera and Jose-Luis Fernández (2020), Estimates of number of deaths of care home residents linked to the COVID-19 pandemic in England.
[28] British Geriatrics Society (2020), Managing the COVID-19 pandemic in care homes for older people.
[29] The Relatives & Residents Association reported that at least half of all calls to its helpline since the start of the pandemic involved concerns about the mental health of someone in a care home, see Relatives & Residents Association (2020), Urgent action needed to prevent mental health crisis in care homes. The risks to older people’s mental health has been recognised by the World Health Organisation, see WHO (2020), Infection prevention and control guidance for long-term care facilities in the context of COVID-19: interim guidance, 21 March 2020.
[30] Alzheimer’s Society (2020), Evidence to the Health and Social Care Committee on delivering core NHS and care services during the pandemic and beyond.
[31] See Health and Social Care Committee (2020), Oral evidence: delivering core NHS and care services during the pandemic and beyond, Q247.
[32] Age UK (2020), Age UK response to DNR forms during Covid-19 crisis.
[33] Ibid.
[34] See Independent, Coronavirus: Matt Hancock to take action on ‘do not resuscitate’ orders after growing concern on use of notices during Covid-19 crisis, 14 July 2020.
[35] See Care Provider Alliance (2020), Targeted CPA survey, business continuity. Care England has raised 25 questions about the Government’s guidance on COVID-19 and care homes, including discrepancies with other guidance. See Care England (2020), Questions arising out of the ‘Admission and care of residents during COVID-19 incident in a care home’ guidance.
[36] See Care England (2020), Questions arising out of the ‘Admission and care of residents during COVID-19 incident in a care home’ guidance, and Alzheimer’s Society (2020), Care homes ‘left to fend for themselves against coronavirus’, which reports that a number of care homes surveyed said there were particular challenges with people with dementia who could not retain information about social distancing. The British Geriatrics Society also notes that swab tests may be particularly distressing for residents with dementia, autism or learning disabilities, see British Geriatrics Society (2020), Managing the COVID-19 pandemic in care homes for older people.
[37] Neil SN Graham et al, SARS-CoV-2 infection, clinical features and outcome of COVID-19 in United Kingdom nursing homes. This study of 4 nursing homes in London found that as many as 22 of 72 residents with symptoms (31 per cent) had none of the typical symptoms.
[38] Government guidance on avoiding restraint in health and care settings was published in 2014 in recognition of the fact that restrictive interventions had not been used consistently only as a last resort, and had in some cases been used to inflict pain, humiliate or punish. See Department for Health (2014), Positive and proactive care: reducing the need for restrictive interventions.
[39] See Equality and Human Rights Commission (2019), Human rights framework for restraint. Segregation that amounts to solitary confinement (defined as 22 hours a day or longer without meaningful human contact) is contrary to human rights standards as established by the Mandela Rules.
[40] Article 3 ECHR. The Government’s obligations to prohibit ill-treatment covers both deliberate abuse and neglect.
[41] Article 8 ECHR.
[42] Equality and Human Rights Commission (2019), Human rights framework for restraint.
[43] Ibid.
[44] Routine inspections were suspended on 16 March 2020 and by 16 July 2020 had not yet resumed. CQC (2020), Routine inspections suspended in response to coronavirus outbreak. The CQC has continued in this period to take action, as deemed appropriate, where they are alerted to a concern.
[45] Estimates suggest 97 per cent of care homes have been closed to visits, see ONS (2020), Deaths involving COVID-19 in the care sector, England and Wales: deaths occurring up to 12 June 2020 and registered up to 20 June 2020 (provisional).
[46] At least two care homes were inspected during the pandemic and rated inadequate, see CQC (2020), Whitway House inspection report and Temple Court Care Home inspection report.
[47] CQC (2020), Temple Court Care Home inspection report.
[48] CQC (2020), Identifying and responding to closed cultures.
[49] Article 8 ECHR.
[50] Alzheimer’s Society (2020), An open letter to the Government – allow family carers key worker status.
[51] Ibid.
[52] British Geriatrics Society (2020), Managing the COVID-19 pandemic in care homes for older people.
[53] Ibid.
[54] Department for Health and Social Care (2020), Update on policies for visiting arrangements in care homes.
[55] The right to liberty is protected under article 5 ECHR. DoLS require that decisions made on behalf of someone who lacks capacity are in their best interests and that any restrictions on their freedom are appropriate. Just over 216,000 DoLS applications were completed in 2018-19, see NHS Digital (2019), Mental Capacity Act 2005, Deprivation of Liberty Safeguards England, 2018-19.
[56] The CQC has made clear that safeguards remain in force during the pandemic, and that deprivations of liberty should be avoided unless absolutely necessary and proportionate to avoid harm in the individual case, see CQC (2020), Working within the Mental Capacity Act during the coronavirus pandemic.
[57] Judiciary of England and Wales, Correspondence from the Vice President of the Court of Protection dated 4 May 2020.
[58] See National Audit Office (2020), Readying the NHS and adult social care in England for COVID-19.
[59] Prime Minister’s Office (2019), Queen’s Speech December 2019 – background briefing notes.
[60] See also our previous submission to the Committee on the impact of coronavirus on social care in the community and on disabled people’s right to live independently.
[61] According to the Women’s Budget Group, 83 per cent of social care workers are women and around 21 per cent come from ethnic minorities, see Women’s Budget Group (April 2020), Crises collide: women and Covid-19.
[62] ONS (2020), Coronavirus (COVID-19) related deaths by occupation, England and Wales: deaths registered between 9 March and 25 May 2020, figures 5 and 6. This group includes care workers and home carers.
[63] See National Audit (2020), Readying the NHS and adult social care in England for COVID-19, para 19. Testing for front-line health workers was made available at the end of March.
[64] ONS (2020), Impact of coronavirus in care homes in England: 26 May to 19 June 2020.
[65] Association of Directors of Adult Social Services (2020), Budget survey 2020.