The government has failed care home residents

This piece analyses the UK government's performance against ten policy objectives published by WHO Europe. It seeks to shed light on why there have been an estimated 22,000 'excess deaths' in care homes, and why it is still not too late for the government to act.

The WHO’s Copenhagen-based regional office for Europe has published a 30-page guidance on preventing and managing the COVID-19 pandemic across long-term care services in Europe. Observing that “[t]he number of infections and deaths in care and nursing home facilities and the lack of timely and reliable data have alarmed decision-makers, health care providers and communities”, the guidance seeks to provide lessons learned from across the WHO-Europe region.

The latest figures in England and Wales are shocking. Deaths registered by 15 May in England involving COVID-19 in care homes was 11,096, while in Wales it was 548. Research from the LSE says that actually there have been 22,000 'excess deaths' in care homes. This compares with around 3,000 in Germany and none in Hong Kong. 

How did the UK go so wrong? 

The WHO-Europe guidance starts off with by reiterating that “spread is not inevitable” in care homes. It makes the point that most people with care needs require regular support with personal care that in turn requires either a high level of physical contact, and/or assistance with what it calls “instrumental activities” such as shopping, housework, meals and getting around. 

It then sets out ten policy objectives to prevent and manage the COVID-19 pandemic across care homes. I have used these as a lens to analyse whether these objectives are being met in England (my analysis does not apply to the other three jurisdictions in the UK). Many of these points will be relevant to determining whether the UK government has put in place adequate policies and provision has been adequate to protect against a risk to life. For each objective I have scored the government’s performance out of one, giving a maximum possible score of ten out of ten.

1. Prioritise the maintenance of long-term care services during the COVID-19 pandemic through an effective governance mechanism

WHO-Europe’s actions to achieve this objective include a “focal point to manage services for older people and people who need care, with special focus on LTC providers, in the overarching COVID-19 governing structure/body”. As far as I am aware, there is no such focal point in England. Rather, there is a web of national statutory bodies: the Department of Health and Social Care (DHSC), the Ministry of Housing, Communities and Local Government, Public Health England (PHE), NHS England and Improvement, the Care Quality Commission (CQC) and the National Institute for Clinical Excellence (NICE). Then there are local authorities, care providers themselves, professional bodies and improvement support agencies like the Social Care Institute for Excellence. It is unclear which, if any, has a coordination role. As for SAGE, it was revealed today that care homes was discussed only twice in five months of meetings. SAGE has no social care experts, geriatricians or learning disability experts.

WHO-Europe recommends “a surveillance system that captures the number of cases and deaths (probable and confirmed)” in care homes “and ensure that these are integrated with existing surveillance systems”. The information provided to CQC by care homes via death notifications only started forming part of the weekly reporting on deaths by the Office for National statistics (ONS) on 28 April.

The WHO-Europe recommends “Establishing a mechanism to plan, prioritize and support implementation of measures to protect staff and people receiving LTC from infection or spread of COVID-19”. There is no such plan in England. The guidance issued by DHSC, PHE, CQC and NHS England on 2 April is not a plan, but a set of clunky paragraphs, random bullet points, non-informative annexes. It contains a confusing mix of instructions, advice and policy promises. 

The document does not set out an objective, but rather a desire: “we want to support Care Home Providers to protect their staff and residents”. It urges care homes “to make their full capacity available to support the national effort, both in terms of beds and their skilled care staff”. We now know that at least 1,800 beds in care homes were block-booked to receive people discharged from hospitals. Until mid-April there was no requirement to test these people. There is still no requirement for a patient entering a care home to have a negative result.

“In return”, the guidance says (as if this it was a transaction) “will ensure you have the information and support you need to safely admit and care for patients during the pandemic”. The guidance further promises to “ensure a longer-term supply of all aspects of personal protective equipment (PPE)”. As is now well-known, those two promises have not materialised. There have been mixed messages and grey areas, according to some care providers, who also report a lack of government support.

WHO-Europe recommends “establishing a team to develop, adjust and update guidelines and protocols for [long-term care] services based on the best available evidence and by consulting various WHO guidance”. On 15 April, a note was inserted to the 2 April UK guidance saying “this guidance is being reviewed” and “we will publish updated guidance soon”. It is now June and no further guidance has been published. The reason for the update was because the government had published a “adult social care action plan”. The note about the update refers to various paragraphs in the plan which readers should use in the interim. Even the update is unclear and confusing. The update includes interim guidance for “managing outbreaks”, and if you follow through to the suggested paragraph in the plan [para. 1.23] it says, “in the event of a suspected outbreak of COVID-19 in a care home, the first step is for the care manager to refer to the local Health Protection Team (HPT)”. You then circle back to the guidance and get confused because it says the same thing on page 6.

Score: 0. There is little to suggest that the government threw a “protective ring” around care homes. 

2. Mobilize additional funds for the long-term care system to respond effectively to the COVID-19 pandemic. 

The WHO-Europe suggests consideration of, “injecting extra ring-fenced funds for [long-term care] to cover the costs of increased staff numbers, compensate for lower occupancy rates, and pay for IPC [infection prevention and control] measures”.  

The government provided £3.9 billion funding to local government in March, but it was not ring-fenced for care homes, so it could be used for all sorts of things: from children’s services to road sweeping. On 18 May, the government announced a £600 million “Infection Control Fund” to tackle the spread in care homes. The ring-fenced fund for social care and delivered through local authorities was “to ensure care homes can continue to halt the spread of coronavirus by helping them cover the costs of implementing measures to reduce transmission”. The government suggested the funding “could be used to meet the additional costs of restricting staff to work in one care home and pay the wages of those self-isolating.” Guidance issued the same day told providers that they “should employ staff to work at a single location” – I know from speaking to care home staff that the reliance on agency staff on zero hours contracts makes this impossible for many care homes.

Let’s assume that the £600 million fund is divided equally between England’s 18,362 care homes. Each would receive £32,676, and with an average of 20 beds, that’s £1,633 per bed. It was reported in mid-May that little of the funding had been received by care homes and the Association of Directors of Social Services considers the rules around the fund to be “confused and unnecessarily bureaucratic”. Care home providers say it is not reaching the frontline.

Score: 0. £600 million sounds like a lot of money, but I don’t consider £1,633 per bed a large investment into protecting the right to life. 11,000 of those beds’ occupants are now dead. Had this funding been arranged in February or March, car homes might have stood a better chance. 

3. Ensure infection prevention and control standards are implemented in long term care services to prevent and safely manage COVID-19 cases 

WHO-Europe suggests that actions should include provision of PPE to prevent the spread of infection, as well as other IPC measures like training and decision supports for care staff to be able to recognise symptoms and know how to manage people who have COVID-19. The UK guidance to care homes mentions training twice, recommending that care homes “[e]nsure staff are provided with adequate training and support to continue providing care to all residents.” [p.21] and that staff, “including cleaners, must be trained and understand how to use PPE appropriate to their role to limit the spread of COVID-19” [p.15]. Information about training is patchy. There is no data about whether care homes receiving discharged patients had training on how to care for suspected cases. I am not aware that the CQC has made IPC training for staff a requirement for care homes.

The English care home guidance says that, “[c]are home staff who come into contact with a COVID-19 patient while not wearing PPE can remain at work” [p.7] and that they need only wear PPE when within 2 metres of a resident with possible or confirmed infection [p.15]. The government’s IPC guidance similarly says that in care homes, PPE must be worn “for direct care of possible or confirmed cases” It has been reported that the DHSC claims that since 2 April “it urged the use of PPE with all patients, symptomatic or not”. This is not true because it is only on 17 April that PHE produced a publication on 17 April which said, “[a]s there is sustained transmission of COVID-19 we recommend use of PPE regardless of whether residents in your care home have symptoms.”

Global WHO guidance mandates the use of eye protection for care staff providing routine care to a person with confirmed or suspected COVID-19, whereas the UK guidance has no such requirement, advising instead that it “may be needed for care of some residents”, and advising the carer to assess the risk and discuss it with their manager. You can read here an analysis by a microbiologist colleague comparing the WHO and UK guidelines.

Score: 0. The UK’s IPC guidance is inconsistent with the WHO’s guidance on PPE. 

4. Implement safety measures that recognise the mutual benefits of the safety of people receiving and providing long-term care services  

WHO-Europe recommends “developing and circulating standard operating procedures (SOPs) that give direction on how and when to rapidly isolate people receiving LTC services, using the most up-to-date COVID-19 guidance”. Global WHO guidance recommends that residents returning from hospital, or new residents should be placed separately in an isolation area for 14 days. The UK’s adult social care plan says that too [para. 1.33], but the guidance for care homes says, “If an individual has no COVID-19 symptoms […] then care should be provided as normal.” The same is recommended for a resident who was positive but is no longer showing symptoms and has completed their isolation period. The difficulty is that while there is a note on page 1 of the care home guidance saying that the guidance “is being reviewed” following the publication of the adult social care plan on 15, it only highlights to the reader that they need to look at the social care plan for “testing for residents” but a care home wanting to find out quickly whether to isolate a new resident who has tested positive would not think to look in the social cate plan, because the information they want is not about testing, but about how to manage a COVID-19 positive incoming resident. 

I suggest that conflict and confusion means that the policy framework fails to meet WHO-Europe’s recommendation of developing standard operating procedure that uses “the most up-to-date COVID-19 guidance”.

The UK guidance on care homes says that “[a]ll symptomatic residents should be immediately isolated for 14 days from onset of symptoms” and provides no guidance as to when isolation is to stop. The global WHO IPC guidance for care homes is clearer, as it recommends that suspected or confirmed cases should be isolated until two negative laboratory tests for COIVID-19 taken at least 24 hours apart after the resident’s symptoms have resolved, and that if no testing is possible, the resident is to remain isolated for an additional two weeks after symptoms resolve.

WHO-Europe recommends that governments produce guidance and provide training for all care staff and families on the necessary measures for those who are not sick but who are living in care homes or using care services. Apart from the offer for care homes to sign up to webinars, no centralised training is available, although individual care providers are rolling out their own training. The Social Care Institute For Excellence is running an e-learning course on IPC.

WHO-Europe recommends implementing “extended IPC precautions for people discharged from hospital”. On 19 March, the government ordered at least 15,000 hospital beds to be vacated by 27 March, saying that a short spell in an alternative care home is required if the patient’s first choice of a care home has no vacancy. There was no requirement for testing, or for PPE. Only on 17 April was guidance published on how to work safely in care homes which said that PPE should be used (but does not require eye protection, as noted above in answer to question 3)

Score: 0. The UK guidelines have not been updated since flagging the issue six weeks ago. 

5. Prioritise testing, tracing and monitoring the spread of COVID-19 among people receiving and providing LTC services

On 12 March, the government decided to reduce testing for Covid-19 in the community. On 20 March, the European Committee on the Prevention of Torture recommended screening for people deprived of their liberty, “with particular regard to vulnerable groups and/or at-risk groups, such as older persons and persons with pre-existing medical conditions.”

There was no testing until last week in England, and even now testing is only available to care homes with residents over 65 or those with dementia – not for younger people with learning disabilities, autism or other conditions. In any event, it has been reported that just 10% of staff and 10% of residents have been tested.

WHO-Europe recommends contact tracing and isolation be based on contact with confirmed cases. Contact tracing is not yet running, and it has been reported that the lowest tier of tracers (those without clinical qualifications) will deal with outbreaks in care homes.

Score: ½. Testing is not available for those who are under 65. Track and trace is not yet fully operational. 

6. Identify and mobilize surge capacity to secure staff and resources for delivery of appropriate long-term care services during the COVID-19 pandemic

The purpose of the government’s 2 April guidance was to create capacity in the NHS, in concordance with the (then) slogan “protect the NHS”. Its whole premise is to rely on care homes as the safest place to which to discharge recovering or recovered COVID-19 patients without a second thought for the existing vulnerable residents. Patients being discharged from hospitals into care homes were not tested for COVID-10. It is clearly likely that the infection was introduced into multiple care homes via this route. It has been reported that the CQC is investigating claims that people’s positive status was known to the hospital but not disclosed to the care home at the point of discharge.

WHO-Europe recommends governments consider “short-term transfer of residents to alternative accommodation”, and "[w]here possible, reduce care home occupancy to facilitate management of potential outbreaks, or increase designated spaces in the community and hospitals to manage different stages of virus transmission", in recognition that care homes are breeding grounds for infection. The UN policy brief on persons with disabilities and COVID-19 similarly calls on governments to “[r]educe the number of people within institutions. It is important to take immediate action to discharge and release persons with disabilities from institutions, whenever possible”.

Score: 0. Care homes have been left largely to fend for themselves. The government did not provide a safe way for people to be transferred to care homes, or any guidance about moving people out of care homes, where possible, to reduce risk. 

7. Scale-up support for family caregivers during the COVID-19 pandemic 

The scope of WHO-Europe’s document is long-term care, including home care. It recommends the provision of information, support and respite care and “vigilance and monitoring of domestic violence towards family caregivers”, “increased access to psychological support” and an increase of “financial support”.

Guidance was published on 22 May for “domiciliary care agencies”, not families. Charities such as Dementia UK have produced their own. As for domestic violence, the government’s brief guide says nothing about violence against carers.

The government guidance on furlough says that people who are unable to work due to their caring responsibilities can be furloughed. That said, the employer has to agree. There is no government funding for carers who are not employed or for those who are employed but who are unable to be furloughed. A person who is claiming some types of welfare benefit may have their award increased while their income is lower or they are off work.

That said, the charity Carers UK of nearly 5,000 unpaid family carers is reported to have found that “reduced care and support services had left many families with no choice but to care around the clock for loved ones with complex health conditions and disabilities.” They have called for the government to increase carer’s allowance, which is £67.25 a week for those doing 35 hours or more of care.

Score: 0. The government has not provided family carers with increased support. 

8. Coordinate between services to ensure the continuum and continuity of care, including access to health care personnel and equipment in care homes, during the COVID-19 pandemic 

WHO-Europe makes the point that “saturation monitoring and early oxygen supplementation by mask or nasal prongs once oxygen is below 95% is recommended”, and if care homes are not able to provide this “then the patient should be offered a placement where such treatment can be provided”. Denial of healthcare on the basis of “age, vulnerability or displaced notions of utility are concerning and are not recommended”. The actions it recommends include the development of “clear protocols with regard to escalation to primary and secondary care”.

The UK guidance for care home does not set out a protocol, simply offering the following advice if a resident shows symptoms of COVID-19: “Assess the appropriateness of hospitalisation” by consulting the care plan and discussing with the resident and relatives, “as appropriate following usual practice to determine if hospitalisation is the best course of action for the resident.” There have been reports of care home residents been denied hospitalisation when they have needed it, raising the question of Equality Act claims of discriminatory denial of healthcare.  

Unlike other countries that have deployed healthcare staff into care homes, the UK guidance does not envision any such measure.

A letter dated 14 May from the minister for social care set out the government’s first commitment at mobilising clinical support and infection control to care homes. As noted above, by 15 May there had been 11,096 deaths in care homes, so this letter was terribly late. The government promised that by 15 May the NHS would provide “timely access to clinical advice for care home staff and residents, including a named clinical lead for every care home and weekly check-ins”, “proactive support for people living in care homes”, remote monitoring multidisciplinary team for those suspected of having COVID-19 and “sensitive and collaborative decisions around hospital admissions for care home residents if they are likely to benefit.” The NHS supported the introduction and use of key medical equipment such as pulse oximeters to enable remote monitoring of COVID-19 patients within care homes.

Score: ½. This score may be generous, given care homes only began to have a structured access to healthcare staff and equipment from 15 May, by which time over 11,000 care home residents in England had died from COVID-19. 

9. Secure access to dignified palliative care services during the COVID-19 pandemic

WHO-Europe expects that policies, programmes and guidelines to support the provision of palliative care in care homes are revisited in the context of COVID-19. In the UK, NICE has produced a rapid guideline on managing symptoms (including at the end of life) in the community. The British Psychological Association has published guidance on Death and grieving in a care home during Covid-19.

Score: 1. Although experiences will vary, care homes have access to palliative care services. 

10. Prioritise the emotional well-being of people receiving and providing long-term care services throughout and after the COVID-19 pandemic 

It has been recognised that in a context that requires physical distancing, older people in isolation and especially those with dementia may become more anxious, angry, stressed, agitated, withdrawn and overly suspicious during the outbreak and while in quarantine. The WHO-Europe also notes an increase of elder abuse. It recommends establishing an “intersectoral working group to monitor [long term care] staff stress and burnout, assess and implement strategies to provide [mental health and psychosocial supports] to staff”.

The global WHO guidance recognises that “[o]lder people, especially in isolation and those with cognitive decline, dementia, and those who are highly care-dependent, may become more anxious, angry, stressed, agitated, and withdrawn during the outbreak or while in isolation.”. To that end, the WHO recommends that care home staff provide “practical and emotional support” by way of working with “informal networks (families) and health care providers”.

Unlike its Scottish equivalent, the English guidance for care homes says nothing about the emotional wellbeing of those receiving or providing care.

Score: 0. There is no prioritisation of emotional wellbeing of carers or those receiving care. 

Conclusion 

The WHO Europe guidance is welcome, although late. It provides an analytical framework that will be helpful for policy-makers as well as those who manage care homes. It can be used by civil society as a lens to evaluate what is happening in a certain jurisdiction. I have done a quick and dirty analysis and awarded the UK government 2 out of 10. You may think that is outrageously mean or overly generous. I welcome your feedback.

In the meantime, it is not too late to save lives. There are still infections and deaths in care homes. Taking on board the recommendations under any of the WHO Europe’s policy goals has the potential to save lives. I implore the government to act.