Nick Kempe: Isolation, human rights and keeping older people safe in care homes

“The immediate need is that the Scottish Government learns from mistakes that have probably cost hundreds of lives. This is not an argument that the Scottish Government has done better or worse than other governments, but simply that they need to be open about what has gone wrong, consult and act.”

THE DISASTROUS IMPACTS of Covid-19 for older people living in care Homes continues to emerge on a daily basis thanks to stories from relatives and care staff, investigative journalism and a host of questions in the Scottish Parliament.

Our health and care ‘systems’ – one predominantly public, the other predominantly private – and how they interact has been subject to scrutiny as never before. That is a good thing and it’s also good that the Scottish Government has now opened the door to a review of these systems with Jeanne Freeman, the Health Secretary, stating on Monday that there is a “legitimate discussion” to be had about the Care Sector.

Meanwhile, the short- and medium-term challenge which the Scottish Government still needs to address is how to respect the human rights of older people who are being admitted and live in care homes, including their rights to be ‘shielded’ from infection, during the Covid crisis. 

The Scottish Government’s initial Clinical Guidance for protecting care home residents from Covid-19, issued on 13 March, included two main recommendations. The first was to drastically restrict visits from relatives, to prevent Covid-19 getting into care homes. The second was to restrict residents to their rooms, in the hope of to preventing the virus spreading within homes:

Social isolation in rooms. There is a high risk within a long-term care facility that infections are spread between residents through communal areas such as lounges and dining areas. Residents should be isolated within their rooms as much as is practical and ideally reducing time in communal areas by 75% also.”

Both measures might have been justified short-term, to buy a little time to put proper arrangements in place, but it appears some care homes have continued with them for 11 weeks now. It is as if we have placed older people in prison without any visits. That’s a denial of fundamental human rights, inhumane and has had disastrous physical and mental health consequences. The silence from our lawyers is deafening – but then, older people don’t have a voice.

The core of the problem is how to develop effective mechanisms to stop Covid-19 getting into care homes because, if we could do that, there would be no need to confine residents individually.  The challenge to ‘shielding’ care homes is the ‘turnover’; the frequent admissions and discharges, both temporary and permanent. These are caused by rapidly changing health needs among the care home population, illustrated by the average length of stay in nursing homes being less than 18 months.

The figures from the last Care Homes census for 2016/17 – unfortunately the more recent census returns are not yet public – show “44% (4,131) of long stay residents were admitted to a care home for older people from hospital” and 15% (1,384) from another care home. This means that almost 60% of admissions to care homes are from the very institutions where Covid-19 is still rife. This is likely to remain the case for the foreseeable future so, in addressing this, we need to learn from the serious mistakes that have been made so far.

Discharge from hospital

While considerable attention has been paid to infection control in the NHS, Hospital Acquired Infections still pose significant risks and particularly to vulnerable older people. Once medical treatment and rehabilitation is complete, it is generally in their health interests to leave hospital sooner rather than later. That is particularly the case where the Older Person is being cared for on a multiply-occupied ward,  as was tragically shown by the serious outbreak of Covid-19 in Gartnavel Hospital in Glasgow. In principle, therefore, it was eminently sensible to try and get as many ‘delayed discharges’ – i.e people whose medical treatment had ended – as possible out of hospital. 

How to reduce “delayed discharges”, however, has been an intractable problem for over 20 years now. One of the main drivers for the creation of Health and Social Care Partnerships in 2016 was to address the issue.  Unfortunately, the most recent data shows the problem has got worse, not better, over the last four years.

This failure appears to be a consequence of HSCPs not having the resources to pay for sufficient large packages of care outside of hospital. The result is people get stuck in hospitals, our service of last resort but the opposite of what should be happening. In February, delayed discharges reached their highest levels since a new way of counting had been introduced in 2016 (what counts as ‘delayed’ is complicated). 

What the graph graphically shows, is that there was then a record level of discharges in March.  When questioned about this in mid-April, the Scottish Government responded by saying there had been 300 discharges in March. 10 days ago, about the time the statistics were published, it was revealed 921 older people had been discharged into care homes in March.

It has since been established that on 6 March, Malcom Wright, then Chief Executive of the NHS and Director General of Health at the Scottish Government, wrote to all HSCPs asking them to reduce delayed discharges from 1650 to 1250 by 9 April. This had been achieved by 27 March when Mr Wright asked HSCPs to reduce numbers by a further 500 by the end of April. That, according to a letter from the Health Secretary Jeanne Freeman to HSCPs appears to have been “achieved” by the 10th April. (The figure here tally with a Report produced by David Bell of Stirling University, which was released yesterday and quite independently of the work I have done).

In terms of the speed of discharge, it is worth noting that the Coronavirus Act, which covered both the UK and Scotland, came into force on 25 March and Section 16, when ‘switched on’, modified the requirement for a needs assessment to be undertaken before a care package could be arranged.  That meant HSCPs could in theory place older people directly in care homes without an assessor or assessment that normally safeguards people from being placed in inappropriate or poorly performing services.  To what extent, if any, this provision was used to get older people out of hospital is another question that needs to be answered.

While the NHS undoubtably needed to create capacity in hospitals, the problem was that by mid-March Covid-19 had started to circulate in hospitals. On 13 March, 85 cases had been reported (almost all likely to have been in hospital) along with the first two deaths.  Without tests, some of the 921 older people discharged into care homes in March will have had Covid-19, and the likelihood will have grown for those discharged in early April.  There appears to have been no risk assessment. 

Instead of treating care homes as part of the health care system, care homes were left to manage the issues themselves. Relatives may have been stopped from visiting, but the far greater danger posed by the admission of infected older people from hospital was allowed to continue, indeed pushed, without any effective preventive measures being put in place. The Government’s Clinical Advice of 13 March to confine residents to their rooms at a stage when most care homes lacked Personal Protective Equipment and trained staff was never going to work. 

It should have been obvious from the start that clearing hospitals of older people awaiting care homes places without special transitional measures, including testing, could only be done safely while the NHS was Covid-free.  Had a pandemic plan been in place, as recommended by the 2016 Cygnus Report, hospitals might have been emptied earlier and the scale of the disaster in care homes reduced. As it was, it appears the government acted at least two weeks too late.

The preparedness of Care Homes

In ‘The Predictable Crisis’, I argued that care homes were unfit and unprepared  for managing people with Covid-19. Discharging potentially infected people from hospital was asking for disaster. This has, however, played out in different ways with some care homes controlling the number of Covid cases better than others. Evidence for why this is so has now started to emerge.

Tony Banks, owner of the Balhousie Care Group, Scotland’s largest independent provider of Care Homes, has now spoken out.  He describes how the Balhousie Group of 24 care homes decided to shut down on 11 March but were then pressurised into taking new admissions from hospital, at least one of whom turned out to be Covid-19 positive. He went on to explain that just 19 per cent of the Balhousie Homes now have a Covid case compared to the Scottish average of 44 per cent.

What Mr Banks didn’t mention was that the Balhousie Group appears far better at extracting profits than providing good quality care. Balhousie Care Ltd, which operates 19 care homes in the group, made £4,894,000 net profit before tax for the year to September 2018. According to the Care Inspectorate’s data store in February, three of those Care Homes had minimum grades of 2 or ‘Weak’ and 8 had grades of 3 or ‘Adequate’. The average standard of care for the Group, as evidenced by the Care Inspectorate, is significantly lower than the Scottish average for care homes. Indeed one of the care homes, North Inch House was, in August 2019,  graded 2 across all four Inspection themes. That is worse than Home Farm Care Home on Skye which has been so frequently in the news.

What the Balhousie Group figures suggest is that many of the care homes that have avoided Covid-19 outbreaks have not done so because of high standards of infection control, but rather because they stopped all admissions or because they were lucky and the people they admitted were not infected.  From a health and care systems perspective, that is as unsustainable as keeping older people in hospital.

There are, however, Care Homes which I believe could show the way forward. I have heard of one on the southside of Glasgow which had an outbreak of Covid-19 but has managed to contain this. They did so by shutting off a unit and instigating strict infection control measures, such as restricting the staff who entered and ensuring all those that did changed clothes and on entry/exit from the unit. In other words, they applied the tried and tested public health principle of strict isolation of infected cases in just one part of the care home. It would be in the public interest to know if any Care Homes have contained outbreaks without taking such stringent measures, and if so what these were.

Covid-19 and the rights of older people, their relatives and staff

The failure of government’s approach to date of  managing the Covid-19 crisis in care homes was brought into sharp relief by the case of a family watching their relative die on Facetime. The older person was probably not aware of the identity of the gloved carer, but had been give no chance to say their goodbyes to their family beforehand. What it must have been like for the carer and the family I cannot imagine. What the older person’s last few weeks must have been like is hard to contemplate. If mentally able, how would any of us react to being socially isolated to face death? Scared, distressed, angry, resigned… The feelings are unlikely to be conveyed by a list. And if suffering from dementia? 

While many relatives and staff are now speaking out, and their stories being reported in the media,  the full extent of the distress and harm that has been caused by the policy of confining older people to their rooms as much as possible has still to be revealed.

A few things are predictable. Frail older people rapidly lose muscle and confining them to their room is a recipe for rapid physical deterioration; it will explain some of the ‘excess deaths’ in Care Homes. Another is increased confusion and distress. There are cases where the only person a care home resident recognises is their spouse or partner and their visits were their one solace. What happens to the many people with dementia who unconsciously calmed their mental distress by ‘wandering’ – there is nothing better than walking for one’s mental health – when they are confined to their rooms?

Alongside the horror stories, there are care homes that have done things differently: care homes that by keeping the virus out, have been able to maintain communal activities among residents; care homes that have found ways to enable families to see their relatives safely even if this is only talking through an open window. We need to hear more about that too.

The Scottish Government has said it will “consider the introduction of designated visitors to care homes” under Phase 1 of its route map out of lockdown. Along with an urgently needed increase in the freedoms of older people in care homes, the question is how?

Isolation units would provide the solution to both safety and human rights issues

Covid-19 spreads easily in care settings and, once in a care home, is very hard to control just like in a hospital. Even if our care homes all had full PPE, highly trained and sufficient care staff and lots of cleaners, by far the safest option is to keep the virus out of care homes completely. Once a single resident has Covid-19, that has implications for every other resident and all staff. By contrast, where a care home is virus free, there is no reason that life within could not continue more or less as normal.  That would have a whole lot of other positive health outcomes instead of “excess deaths”.

Given that the threat of Covid-19 will remain until such time as an effective vaccine is available, there are three issues that need to be systematically tackled if care homes and their residents are to be protected and their rights respected.  

The first is how to prevent staff inadvertently bringing the virus into the care home. That, I believe, needs more work but could be done through contact tracing (so staff who have been in contact with someone outside of work who has Covid-19 are immediately alerted to this), symptom monitoring (daily temperature checks?) and the implementation of very strict infection control measures when staff arrive or leave from work (changing clothes, washing etc). This is probably the trickiest of the three issues to resolve as it will never be possible to eradicate all risks.

The second is about safe transfer of new admissions and transfer of residents in and out of hospital for treatment. In response to public pressure, the NHS is rightly testing older people before they are discharged to care homes but this is having some unintended consequence. Hospitals are now having to do this twice several days apart, so some people whose health problems can be treated overnight are having to remain in hospital for several days. While waiting for their second test, the Older Person is at risk of catching Covid or another infection, particularly if they are not in a single room. 

The answer to this could be some form of specialist screening, including use of pre-admission units for the 1000-plus older people who move into care homes long-term to ensure they are virus free. For people resident in the community prior to admission, potentially such screening could be done while at home, but for people in hospital might involve moves to pre-admission units. Such units could have dedicated staff teams, very strict infection controls and tests to establish when the person can be moved out.  While pre-admission units might deprive people of their liberty for a short time that would be infinitely preferable and have far less severe consequences than the indefinite lockdown that has taken place to date within care homes.

Such units could be run by hospitals or by creating small dedicated units in care homes which were sealed off from the rest of the establishment. Both would require some capital spend, but the Scottish Government has spent £43 million on the new unused Louisa Jordan hospital, so why not spend that on new facilities to protect care home residents? Such units would also require more staff but then we need more staff to manage Covid-19 safely. 

If attached to care homes, such units could in the longer term be used to control other infections far better than we do at present by moving people out into them. Each year, mainly unnoticed, flu kills many older people.  In 2017-18 officially there were 23,137 flu deaths in Scotland. Many will have happened in care homes and its likely that in many cases will have infected as many residents as Covid.

The third issue is how to prevent relatives and other visitors bringing Covid-19 into care homes. Again, it will take money to sort out.  If you have a Covid-free care home the risks of older people meeting relatives outdoors, as long as they maintain physical distancing, is very low. But this is only feasible over the summer months. With suitable facilities, such as a meeting room by the front entrance, which was fully cleaned between each visit, it would also be possible for relatives to meet residents indoors. Safely allowing more contact than that is dependent on contact tracing and on relatives, like staff, being alerted if they have been in contact with anyone who has the virus.

The need for a plan for care homes based on established principles of public health

The evidence that has emerged over the last three weeks has highlighted that discharges from hospital are likely to have played a key role in spreading Covid-19 into care homes, most of which were completely unprepared for this. The immediate need is that the Scottish Government learns from mistakes that have probably cost hundreds of lives. This is not an argument that the Scottish Government has done better or worse than other governments, but simply that they need to be open about what has gone wrong, consult and act.

The approach to protecting older people needs to be based on preventing the virus getting into care homes and a countrywide plan based on the core public health principles of test, track and isolate. That will require some form of isolation and screening for everyone being admitted to care homes and this is particularly important for transfers from the NHS where the risks of hospital acquired infection are very high. Temporary isolation of individuals, however, would be a low price to pay, for restoring the right and dignity of the care home population as a whole, their relatives and the staff who care for them.

If this is to work, it will require care homes to come under the umbrella of the NHS far more than they have done previously, and to be seen and treated as an integral part of the health care system. This will require extra resources. While such resources could be located in care homes, it doesn’t appear to be in the public interest to pay private providers like Balhousie Care Ltd to do this. Any effective plan is therefore likely to require longer-term reform.