The needless death toll: how Britain’s care homes were betrayed
The Health Secretary was keen to push back on claims that the government had neglected care homes during the coronavirus pandemic. A “protective ring” had been thrown around the sector “from the very start”, Matt Hancock claimed back in mid-May.
Even at the time, few acquainted with the care home sector took the assertion seriously. Professor Martin Vernon, the NHS’s former National Clinical Director for Older People and Person Centred Integrated Care, even confessed he was shocked to see Hancock make a claim so far from reality. Some care home owners were incredulous at Hancock’s claim. Robert Kilgour, Executive Chairman of Renaissance Care Homes, says: “The claim would be laughable, were things not so deadly serious.”
Since then, anger has only grown as the scale of the extraordinary disaster that was allowed to unfold in England’s care homes has become apparent.
Data published by PHE shows that by 21 June 6,538 or 42.2%, of all English care homes had experienced a confirmed or suspected Covid-19 outbreak. The results have been devastating. The latest figures released by the ONS, which go up to 26 June, show 13,873 deaths involving Covid-19 among care home residents in England i.e. 48.4% of all coronavirus deaths reported by NHS England up to that date.
Even this might be an undercount. A recent London School of Economics study found that between 9 March and 12 June care homes in England and Wales had seen 26,745 excess deaths. It also found that care home residents were more likely to die of coronavirus in the UK than in in any other major European country bar Spain.
According to the study, between 11 March and 12 June, 5.3% of all UK care home residents died due to coronavirus. By comparison, these figures stood at 6.1% for Spain. Many countries – including Germany, Hungary, and Denmark – did far better, keeping their numbers below 1%. Even Italy, which was badly hit by the virus, only saw 3.1% of all care home residents die from coronavirus.
Like so much else in the British end of this crisis, a large part of the blame lies with the lack of testing and PPE, issues with which the UK long struggled. The crisis was further compounded by government policies that shifted the burden onto care homes without providing adequate resources to cope. In the words of Mike Padgham, Chair of the Independent Care Group and Managing Director of St Cecilia’s Care Group, “Care homes feel like they have been forgotten”.
Why did this happen? How could it be that, beyond all the rhetoric about caring for the most vulnerable, Britain made such basic mistakes in looking after the elderly and vulnerable in the nation’s care homes?
Some of the earliest advice given to care homes at the start of the crisis now appears positively reckless. On 25 February as Covid-19 surged, guidance by Public Health England advised that care home staff need not wear masks. On 13 March PHE issued further guidance which, while advising that those feeling unwell should not visits care homes, did not impose a ban on visits. In fact, it emphasised that seeing friends and family could have a “positive impact”.
Faced with “slow and sometimes contradictory” advice, care homes had to rely on “common sense” according to Padgham. Vitally, he stocked up on PPE early, before government advice was issued, but it was “a scramble”. Manufacturers were already struggling to keep up with surging demand and countries competed viciously to secure adequate supplies. He also locked down his care homes 11 March – and other homes he knew of followed suit. Other care homes that attempted to do this claim they were threatened with deprivation of liberty orders by the care quality commission, as revealed on BBC Newsnight.
On 17 March PHE was at last coming to grips with some of the measures needed to prevent coronavirus’ spread within care homes, some time after responsible care homes had done so themselves. New guidelines were issued that PPE should be used by carers when performing activities that required “direct contact” with residents or when within 2 metres of a coughing resident, and mask use for other daily tasks. However, as care homes had already found PPE was in short supply. The very first question in the FAQs dealt with PPE shortages, and suggested PPE could be reused.
NHS leaders were also starting to get in gear. The priority, understandably, was to avoid hospitals being overwhelmed by the sheer number of patients as had happened so horrifyingly in Italy. This was to be avoided by freeing up 30,000 hospitals beds, in large part via mass discharge of patients deemed fit to leave.
This priority was emphasised, and reemphasised, in letters sent 17 and 19 March – and chimed with the escalation plans that a number of hospitals had developed and were in the process of implementing. Mass discharging of patients was further aided by the Coronavirus Act passed 25 March, two days after lockdown began, which expedited the usual discharge procedures. Hospitals acted with gusto, quickly freeing up thousands of beds.
As these government instructions explicitly planned many of these patients were discharged into care homes. While most care homes are privately run, they have long worked hand in glove with the NHS which pays them to care for discharged patients, allowing them to complete their recoveries outside of hospitals.
The sector is vital for healthcare in this country and is even larger than the NHS. The NHS is the single largest employer in England with around 1.1 million full time staff. Meanwhile, the social care sector, while fragmented between various employers, provides 1.62 million jobs. Only 6% of this workforce is employed directly by the NHS. Even if we only count residential care (care homes) this still adds up to 685,000 workers. Vitally, the sector also has far more capacity to absorb large numbers of patients. In the year 2019/20 the NHS had a total of 141,000 beds, in 2019 the adult social care sector had 456,545 beds.
Now, at speed, the sector was being called upon to act as a backstop at a time of crisis, yet was offered too little support to help it in this role. The focus on saving the NHS, which combined this policy of mass discharge with the apparent decision to prioritise providing key resources such as testing and PPE to the NHS, had disastrous results.
As the patients were discharged into care homes, data from PHE shows that coronavirus was already in the process of establishing itself there. By 22 March there were already 281 care homes with confirmed or suspected Covid-19 outbreaks. This would quickly climb with another 520 outbreaks 23-29 March.
Discharged patients seem to have been vital in spreading the disease within care homes. Guidance issued on 2 April by the Department of Health and Social Care, the CQC, PHE, and NHS England allowed for Covid-19 positive patients to be discharged into care homes. It stated: “Some of these patients [discharged into care homes] may have COVID-19, whether symptomatic or asymptomatic.” Guidance issued on 9 April was even more explicit stating: “It is important to note that patients can and should be discharged before resolution of symptoms provided they are deemed clinically fit for discharge”.
Those displaying symptoms were simply to be isolated in separate rooms, ideally with separate bathrooms. Local authorities were supposed to provide alternative accommodation if this was not possible. Yet, according to an investigation by Sky News some local authorities threatened the funding of care homes that resisted taking on coronavirus patients.
Meanwhile, most of the patients simply discharged without being tested for coronavirus. The advice was chilling: “Negative tests are not required prior to transfers/admissions into the care home.” When care homes resisted taking in untested patients Professor Green alleges they faced “pressure” to cave. In other cases he claims that NHS trusts tried to discharge patients late at night into care homes that were resisting taking them, apparently hoping the night staff would not be aware of the home’s policy of refusing to take untested patients. Tests were officially reserved for symptomatic patients and residents in hospitals and care homes, but not care home staff, and even for these persons often difficult to obtain. Care home owner Robert Kilgour likens it to “getting blood from a stone”.
The limited amount of testing is perhaps unsurprising given that Hancock’s aim of 100,000 tests a day was not met until 30 April. The results of the shortfall seem to have been disastrous. A large number of coronavirus carriers are asymptomatic. And many older patients with Covid-19 do not display the typical symptoms such as a cough, high temperatures, and loss of taste/smell needed to qualify for a test. As such, testing only those displaying classic symptoms left major blind spots. An investigation by the UK Dementia Research Institute of four nursing homes found not only that 40% of residents had coronavirus, but that 43% of those who tested positive were asymptomatic and 18% had atypical symptoms.
The impact of this deluge of untested, potentially infectious, patients entering the care home system is obvious. Coronavirus typically has an incubation period of 7 days with 14 days at the most. From late March onwards, about one to two weeks after the mass discharging began, there was a dramatic spike in the number of suspected and confirmed coronavirus outbreaks in care homes.
In the week starting 23 March, 520 coronavirus outbreaks were reported in English care homes. In the week starting 30 March, 795 new outbreaks were reported. The next starting 6 April saw the peak with 1009 newly reported cases, with numbers slowly declining over the following three weeks, at 986, 863, and 708 outbreaks respectively. At the peak of the crisis some care home owners estimate that the R rate, the number of people one person with the disease infects, in their homes was perhaps as high as 10-15.
Visiting policy may also have contributed to the crisis. It was also only on 2 April, nine days after the national lockdown was announced, that it was officially advised that care homes should not allow visitors except next of kin in exceptional situations such as end of life.
The apparent lack of precautions taken with regards to care homes is particularly sobering because the threat was apparent from the very start of the crisis. The fact that the elderly were vulnerable to the disease was known early on, and care homes in other countries had suffered badly. Professor Vernon still struggles to understand why the government was “so very late” to recognise the risk to care homes.
Indeed, government policies, far from protecting care homes, seem to have undermined their defences. Care homes have plans to control outbreaks of infectious disease as a matter of course. These plans all share some basic features which include vaccinating staff and residents (not possible for coronavirus), testing residents if a disease is found to ascertain its spread, isolating the infectious who are detected while putting in place measures to protect other residents, and locking down the care home if necessary. Such measures were difficult to implement for care homes which were warned late in the day about the danger, were not provided adequate testing, and which faced difficulties and even obstructions when trying to make their own preparations.
Further adding to the pressure was the growing staff shortages that many care homes faced throughout the crisis. Carers are no more immune to coronavirus than the residents, even if it poses less risk to the lives of younger workers, and the PPE needed to help prevent them becoming infected was in short supply throughout the crisis. An ICG survey found that 66% of its members had faced problems with PPE supplies. Again, part of the issue seems to have been the prioritisation of the NHS which, in some cases, resulted in PPE ordered by care homes being intercepted and diverted to the health service.
Regardless of the reason, the result was that many care homes faced dire shortages of PPE, which in turn fuelled staff shortages as carers fell ill. At one care home the only four members of staff present were forced to share PPE.
Yet, even as care homes faced staffing shortages the amount of work required increased. Isolating large numbers of care home residents is hugely challenging according to care workers I spoke to, as many patients suffer from various physical and cognitive problems. Those with dementia pose particular difficulties as when left alone they can quickly grow scared and confused and risk injuring themselves. They also tend to wander, breaking quarantine. When isolation is the only option these residents become very reliant on reassurance from carers. However, the staffing shortages meant that carers often simply did not have the time to properly enforce isolation measures, let alone provide this sort of support.
The strain on carers has been immense. Inability to provide residents with the level of care they deserve has left many carers feeling guilty – despite their incredible efforts, in some cases they were prepared to live in the care homes as a way to limit transmission. Being the only company dying residents had and liaising with families that slowly grew more frustrated and concerned, weighed perhaps even more heavily on them. At the same time, the lack of PPE and testing, as well as confusion over what procedures should be followed, left them fearing for their own safety.
Even more chillingly, a number of those who did not display symptoms, and continued to work, appear to have been asymptomatic. How much of a problem this was is unclear. The UK DRI research found only 4% of staff who tested positive to be asymptomatic. However, recent figures released by the not-for-profit care home operator MHA, which has tested all staff and residents at 86 of its 90 care homes, found 42% of staff who had tested positive were not displaying symptoms.
Only recently has the PPE and testing necessary to combat this become more available. Professor Green only saw PPE supplies improve noticeably in late May. It was also not until 15 April, the week 986 coronavirus outbreaks were reported in care homes, that Hancock finally declared all patients should be tested before discharge into care homes. Testing was also officially made available for all symptomatic care home residents, as well as symptomatic care home staff and the symptomatic in their household. The move was confirmed in a DHSC policy paper the next day.
Yet, the limited testing of care home residents and staff to the symptomatic meant that the asymptomatic, or those displaying atypical symptoms, still risked going undetected. Getting hold of the promised tests also remained difficult. Testing centres were also often far from care homes themselves, making them difficult to get to, and test results were often slow to be returned.
Finally, 15 May, on the same day he made his protective ring claim, Hancock declared that all residents and staff would be tested in care homes for the elderly, setting a deadline of early June for this. However, by this point the worst had already happened. The 297 new outbreaks were reported that week was, but it was less than 30% the numbers at the peak.
Nor did rhetoric match reality. A report by the Data Analysis Bureau found that that between 15 May when Hancock made the announcement and 27 May just 9% of care home staff and 10% of residents were tested. Since the crisis began only 15% of care home staff have been tested, and only 38% of care homes have had any staff tested at any point in time. It seems we have a long way to go until care home staff and residents can be tested twice a week, which care homeowners I spoke to saw as a vital safety procedure.
Part of the problem still seems to be not just lack of tests but poor organisation. One nursing home worker spoke of an absurd saga when they were administered tests and told to keep them at the nursing home to be picked up, only for no one to arrive within the required three-day window. This rendered the tests invalid, and the results came back as inconclusive. Another round of testing then took place, but they are still waiting on the results.
Meanwhile, throughout the crisis care homes have often not received proper support from the NHS that they helped keep afloat. Even before the crisis NHS provision of healthcare to care home residents was often not of the same standard afforded to the general population according Professor Vernon. During the coronavirus crisis this gap apparently widened further. Professor Green spoke of a “withdrawal of resources” by the NHS with some GPs refusing to visit nursing homes, send residents to hospitals, and in a few cases trying to issue blanket do not resuscitate orders for all care home residents.
That care homes could have received more support during the crisis if there were better policy is not in doubt for Professor Vernon. While still an NHS Director he helped oversee the formulation of the Ageing Well programme which aimed to improve access to medical in care in care homes. Despite the plan being laid out in January 2019 and having £4.5 billion allocated to it, it had still not been implemented by the time the pandemic hit. The programme had been delayed by a contract dispute with GPs who found elements of the policy “too onerous”.
At long last, a letter sent 1 May by NHSE and NHS Improvement called for the implementation of the sorts of measures envisioned in the Ageing Well programme “as soon as possible, and within a fortnight at the latest”.
By that point, the number of new outbreaks in care homes was already dropping rapidly. Furthermore, if it was reasonable to expect these measures to be put in place in two weeks, and the urgency of the situation was apparently severe enough to ride roughshod over GPs previous objections, this begs the question: why was this not done earlier? In this policy area, and in so many others, Professor Vernon sees the government as “playing catch-up” with events. Similarly, the policy of automatically isolating anyone entering care homes for 14 days was only adopted 19 June.
In many ways the whole story of the care home industry is one of necessary reforms being put off. The system, which is such a vital part of healthcare in this country, has been creaking for two decades now. Cuts to its funding over the past decade have made things worse. Even before the crisis, in October 2019, there were 122,000 vacancies in the social care sector according to Skills for Care. As the population greys over the coming decades, pressure on the already overstretched system will only grow. Yet, politicians of all parties have put off reform that could prove politically toxic. When Theresa May tried to find a funding solution the policy was labelled a “dementia tax”, and voters served up her fatal election result.
Perhaps long needed reforms may finally take place, spurred by coronavirus. As well as problems with staffing and equitable healthcare access the pandemic is also shining a light on long-standing funding problems. Already creaking budgets have come under massive strain due to coronavirus. In St Cecilia’s, Mike Padgham’s group, spending on PPE has jumped by 414% and other costs, including a bonus for staff, have run into the tens of thousands for a business that operates on fine margins.
While the government has made £3.8 billion available to help care homes with these costs care home owners are complaining the money is not reaching the frontline. Even if the money does reach care homes it may not be enough. Some research suggests the sector faces £6.6 billion in extra costs due to the virus. A survey by the ICG found that 45% of its members said their businesses might be at financial risk due to coronavirus, and that 70% said the financial support offered had not been satisfactory.
Concerns are now being voiced that the lack of support for the care sector means parts of it might collapse. The strain on care homes shows no sign of letting up as coronavirus increasingly looks to be becoming endemic within the system. The risk now is not so much coronavirus inadvertently being brought into care homes. The bigger risk is them becoming reservoirs of the disease and transmitting it out into wider society. Preventing this, and protecting the residents, will require “a long-term protective ring” around care homes according to Professor Vernon. If they are not provided with enough support to do so then the NHS, having relied so heavily on the sector to pick up its slack for so long, may simply grind to a halt.
Reform of social care has never been more urgent and it will require an honest assessment of the policy failures that have led to this point. Yet on 27 May, Boris Johnson, when discussing discharge into care homes stated: “In no case was this done when people were suspected of being coronavirus victims”. Not only did this happen, it is also still allowed to happen under current rules. The Prime Minister’s claim had no more reality than Hancock’s “protective ring”. It is difficult to see how the necessary changes can take place when those at the highest level refuse to acknowledge the most basic facts of what really happened.