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Protecting them to death

Last autumn, I noticed a growing number of posts on social media from desperate families who were still being denied access to loved ones in care homes due to fear of infection with SARS-Cov-2. The stories were harrowing and resonated strongly with me, having lost my own Mum in a care home prior to the Covid-19 crisis. I remember how my visits were not only essential for my Mum’s wellbeing, but also how they offered vital opportunities to ensure that she was safe and well-cared for. I couldn’t imagine how these families were coping, some of them having been separated from loved ones since the first lockdown.  

Older people and younger adults in care have been among the worst affected during the last 18 months. From the human disaster that resulted from infectious patients being discharged into care from hospitals, to the blanket Do not Resuscitate (DNR) orders added to residents’ notes without prior discussion with patients or families, there has never been such a thing as a ‘protective ring’ placed around our most vulnerable.  

This year, the UK Government and the devolved nations announced a succession of guidance documents, in line with the lifting of lockdown restrictions, recommending that regular visiting should be reinstated and supported. However, the recommendations remain guidance only and are not legally binding, allowing care home managers to exercise their own judgement about arrangements. A number of independent care homes have enabled visiting consistently since the first lockdown, setting exemplary standards of care, balancing the safety of residents with emotional wellbeing and the importance of meaningful contact with family. They have shown great leadership and integrity. However, many other care home managers continue to isolate residents from the risk of the virus ‘at all costs’, causing extreme pain and anguish to the families involved. 

Over recent weeks, I have spoken at length with members of the campaign group Unlock Care Homes, who have talked bravely about their experiences. What follows are their accounts of inhuman regulations, intolerable cruelty and, in some cases, outright neglect. The general public are largely oblivious to this situation, since mainstream media platforms have failed to devote sufficient attention to what amounts, unreservedly, to human rights abuse. Some names and details have been changed, because families are fearful about repercussions towards loved ones in care. They would like me to emphasise that care is mostly delivered by kind and diligent staff, working long hours on low pay. It is care home managers who interpret the guidelines and make key decisions about access. 

Limits to visiting

All the families joined the campaign group initially because they had repeatedly been prevented from acceptable contact with loved ones. In April, Chris saw her Father for the first time in over a year. He is in his 90s and has vascular dementia. The care home where he lives went into lockdown before the Prime Minister’s announcement on the 23rd March 2020. Window visits at the home have never been allowed, and management did not even permit garden visits until September. Even then, only one named visitor was allowed. In April 2021, when the manager finally announced that visits could take place in the home, they were granted only for 20 minutes every two weeks. Chris’ Father is frail and confused – and disoriented by being brought down to an unfamiliar downstairs area where visits are permitted. Since June, the family have been allowed up to five visitors, but visits are still only permitted for one hour every other week, and that time includes waiting for the results of a lateral flow test – despite the fact the family and residents are fully vaccinated. Chris describes the visits as ‘undignified’, because they are chaperoned, with a carer positioned the other side of an open door. She receives a ‘five minutes warning’, after which her Dad is just ‘wheeled away’. On many occasions, both he had the family are left in tears feeling distressed. The new guidance, allowing residents to visit places outside the home is unworkable, since the same one-hour allocation must be used for the outing, and residents are not allowed in a car. All visits to the care home must be requested on a booking system and there are only 16 slots for over 70 residents. Chris is desperately worried about her Father’s physical and psychological decline and discovered that he had not seen a GP for over a year. He has lost a lot of weight; his nails are very long, and he badly needs dental care. Residents in the home have not had haircuts for over a year. On video calls that take place in between visits, Chris is concerned that her Father does not seem to have his glasses or pressure cushions. He is often found to be wearing other people’s clothes and has lost several watches. Sensory impairment is common in advanced dementia, and he is effectively unable to understand or communicate. Physical touch from his family – essential for humans to thrive, and even more so for dementia patients – has been prohibited. 

 

Like Chris, other families spoke of similar difficulties accessing their loved ones. Javid recalled that his Mother in Law’s care home locked down indefinitely in February 2020. When restrictions lifted a little for the rest of the country, there were still no garden or screen visits at this home. Access was restricted so rigorously, that Javid was even prevented from serving important legal documents with regard to his Mother in Law’s affairs. Like Chris, Javid is deeply concerned about his relative’s serious physical and emotional decline. Previously a smart and proud woman, she is now on antidepressants, and he describes her as looking ‘gaunt’. There have been no podiatrist, dental or hairdressing services to residents for 18 months, despite repeated requests to management. As many relatives point out, these ancillary services are vital to maintain the health and wellbeing of older people.  Room visits are still denied at this home, and the family have no way of checking the condition of the room, possessions and clothes. Visits are often ‘fully booked’, and if Javid and the family wish to take his Mother in Law out, she is only allowed out for the same half hour visit, once a week. Despite Government guidelines that state visits outside the home should be supported, she is still not allowed to go to a family home, or to travel in a car. Javid, who has experience in social care, remarked that he had never felt so helpless and ashamed about how we are treating older people. 

For some families, relatives are many miles away, and the pain of short visits is exacerbated by exhausting journeys. For over a year, Amanda endured a seven-hour round trip to spend just one hour, once a week, with her Mother. The isolation was catastrophic, and her Mum regularly cried out ‘where are the people? . . . I’ve got nobody’ and ‘there is nothing’, indicating the heart-breaking sense of abandonment that she felt.

Jane, who initially co-founded the Unlock Care Homes support group, was only granted a 20-minute visit to her Mum, every other week – despite living just a few miles from the care home. She was not allowed to walk along the grass or look in the window. Jane’s Mum was diagnosed with an abdominal aortic aneurism, which meant that she could die at any moment, making their enforced separation deeply distressing. In July 2020, Jane started campaigning publicly, and in November, mounted a social media campaign which featured a distressing video of her Mother Rita, on a video call. Although this led to a sympathetic response by the public, and a number of media interviews, the mainstream platforms continue to devote little attention to the subject. She cannot understand why the media are not ‘shouting about this every day’. After over a year, Jane’s Mum moved to alternative accommodation where she was well cared for and the manager agreed to more regular contact; however, she sadly passed away on the 21st May. It is hard to underestimate the pain and trauma these families have experienced.

Such appalling circumstances have not only affected those with older relatives in care homes, but also those with adult children in care. Rachel’s son Simon moved into care in 2019, needing specialist support for a complex, progressive brain disorder. Prior to the first lockdown, Rachel and Simon’s Father were able to spend six hours every day with him. Lockdown restrictions eventually led her to campaign publicly, which resulted in the care home manager threatening to evict Simon from the care facility. Eventually, she was granted six hours a week visiting, in three two-hour slots. Reflecting the concerns expressed by other families, Rachel is also horrified at her son’s deterioration under lockdown. With little or no contact from his family, Simon’s weight plummeted. He was prescribed anti-psychotic medication – against the family’s wishes. The ‘emotional distress’ for which he was medicated, is fundamentally the expression of hunger, lack of physical and emotional attention and a feeling of abandonment. Simon has not received the physiotherapy & speech-therapy that he desperately needs, and, on WhatsApp calls, the family witnessed Simon call out in hunger. Sometimes, other residents can be seen rolling around on his bedroom floor.  

Essential Care Giver Status and what is ‘end of life’?

 

On March 8th 2021, the Government introduced the concept of ‘the essential care-giver role’ (ECG), which recognises that some residents have complex needs and require more regular support from family members (for example, help to encourage feeding, or administering medication). The move was designed to ensure that, for such people, a nominated family member could visit more regularly, and for longer. Only one of the families interviewed from Unlock Care Homes group was eventually granted this status; the others were either refused, or the management failed to recognise the concept all together. In some cases, care home managers did not even know what the ECG role was. Similarly, many families have encountered disputes with GPs and care home managers over the definition of ‘end of life’. Prior to the Covid crisis, it was accepted that residents and hospital patients deemed to be ‘end of life’ should be able to spend unlimited time with their families. NHS guidance states that, although it is not always possible to predict, people are considered to be approaching the end of life when they are likely to die within the next 12 months, particularly if they are frail or suffer from dementia. However, many care home managers have redefined ‘end of life’ to apply only to the final 48 hours of a resident’s life. Consequently, the last days or hours have indeed been difficult to predict, and many families have missed the death of their loved one, only to be informed over the telephone. 

Safeguarding

In numerous cases, families have raised serious concerns about welfare and neglect. Relatives often felt that lockdown restrictions have highlighted pre-existing problems in the adult care sector, which is on the brink of collapse. Some relatives had already voiced serious concerns about care standards, prior to the Covid crisis. Amanda recounted a litany of neglectful incidents, and one in particular when her Mum was discovered, dehydrated and seriously ill. When she investigated the incident, Amanda discovered that the relevant pages of her Mum’s care chart had been removed. On other occasions, her Mum’s pain was not effectively monitored, and Amanda had to insist that she was put on the Abbey Scale (a system by which pain is monitored by behaviour and body language, as opposed to speech). These problems were simply exacerbated during lockdown, and without the ability to visit regularly, families are still being denied the essential opportunity to verify levels of care and safety. Many families claim that poor care and neglect on a huge scale will eventually be revealed, since there is simply no way for them to scrutinise standards in the home. Relatives often also describe poor levels of infection control. This is particularly exasperating for families, who understandably take extra care themselves to follow guidelines and limit social contact for the sake of their loved ones. 

Relatives regularly report incidents of neglect and poor care to safeguarding and local authority adult social care teams; however, when seeking support or redress via appropriate channels, families repeatedly encounter obstacles from the Care Quality Commission, and the Local Government and Social Care Ombudsman. Many have written to their MP numerous times to no avail. Some families, when attempting to move a loved one with dementia to another care home, report that Lasting Power of Attorney status provides them with no real power, since ‘Best Interests’ decisions are repeatedly decided on inaccurate care plans and without vital personal knowledge of the resident. Those who have applied to be a Relevant Person’s Representative under the Deprivation of Liberty Safeguards have been told that a Court of Protection hearing could take many months. Many residents are approaching ‘end of life’ and will have died before a hearing takes place. For all those I spoke to, the situation is now nothing short of desperate. 

The National Care Forum expressly state that isolation caused by restrictions on visits from loved ones is intrinsically harmful and is causing extreme anguish. Underpinning their Visiting Charter is the concept that visiting should be enabled as the default position. The tendency among many managers to isolate residents from Covid-19 ‘at all costs’ is a worrying trend. They argue that the use of infection prevention and control as a rationale for prohibiting safe entry to homes is a misinterpretation, and at times even an abuse of infection prevention and control principles. The longer the current situation prevails, the more likely it is to become routinised. With the vaccine rollout and provision of testing kits, there is no longer any valid reason to restrict access either in terms of frequency or duration.

Trauma 

The families who were brave enough to share their stories with me are deeply traumatised by their experiences. Some report feeling suicidal and many are dealing concurrently with their own serious health issues. Others described night terrors, panic attacks and severe depression. Most are undergoing some form of counselling to support them. Some families revealed heart-breaking stories about older people they had come to know prior to Covid (co-residents and friends of their relatives) who had no family of their own and no advocate to speak for them. Referring to her Father’s care home, Chris told me that an elderly gentleman had been separated from his wife for 14 months. When he was finally allowed to visit her in April, her dementia had advanced to the point that she no longer recognised him. He was so distraught that he feels unable to visit her again. Another elderly married couple, lived in the same care home, but were separated, on different floors. They were allowed no contact for one year. The husband recently passed away, and the wife has not been informed.

And finally

I have been writing about the harms of lockdown for nearly a year. My own position remains that the costs of such an extreme policy, outweigh the benefits. At the very least there should have been open discussion between ‘experts’, professionals and ordinary people on both sides of the debate and a rigorous cost/benefit analysis of lockdowns, which have never before been used as a non-pharmaceutical intervention. Censorship and targeted attacks on anyone who questions the mainstream narrative have done much damage to the scientific and academic communities. I have worked with many groups over the last year and have witnessed the most appalling physical and psychological harm that has resulted from withdrawal of disability and dementia support; the reduction in mental health services; and the loneliness and isolation experienced at every level of society. Many other academics, medics and scientists have spoken out, arguing that the health and social consequences of lockdown are very serious and will be with us for decades. Our voices have been repeatedly silenced and ridiculed – despite the mounting evidence of increased numbers of children with mental health problems, and the rising incidence of domestic violence and child exploitation – exacerbated by a lack of safeguarding when families are locked away behind closed doors. However, for me, it remains our collective failure to protect older people – and the silence that surrounds it – that has been the most distressing. 

 

The physical expression of love, through touch and affection is central to human experience. Without these we begin to die. For those with dementia, the ability to feel others’ compassion is often the only sensory experience that remains. In June 2020 an Alzheimer’s Society Survey of 128 care homes revealed that nearly 80% have seen a deterioration in the health of their residents with dementia due to lack of social contact. Over a year later, many families are still living this nightmare. Collectively, we seem to have lost our humanity. Whatever the threat from new or novel viruses, now or in the future, we cannot again, live for such an extended period of time without physical contact, love and affection. Older people and younger adults in care have no voice. We have never asked them whether the costs of isolation have been worth it. Many have died alone thinking that their families have abandoned them. For their families, the trauma this has caused has been monumental and they will never recover from the experience. It is brutal, heartless and inhumane. It must be stopped, and it must never happen again. 

The Government must amend legislation to ensure that families must be allowed open visiting, unless an individual risk assessment suggests it would be unsafe to do so. In February, Harriet Harman MP, Chair of the Joint Committee on Human Rights, drafted such suitable legislation in a letter to the former Health and Social Care Secretary, Matt Hancock. As yet, this letter, and the voices of families in campaign groups, have fallen on deaf ears. The Minister of State for Social Care, Helen Whately, has resolutely refused to respond to calls for guidance to be enshrined in law. The families feel genuine anger and despair. Government guidance for England was updated on the 23rd of August 2021, and it again emphasises the importance of family contact in supporting the health and wellbeing of residents. It states that ‘named visitors’ should be able to enter care homes for regular visits and encourages the use of Essential Care Givers, where appropriate. However, the guidance is still just that – guidance, not law – and therefore care home managers are still at liberty to interpret the document as they see fit. Indeed, the notes state that frequency of visits is still likely to be limited and/or controlled – ‘booking appointments’ is still recommended and ad hoc visits cannot therefore be enabled. 

Since my original interviews, some families have managed to move loved ones to alternative settings; however, the experiences they describe are mixed, at best. While some are gradually gaining more access to their loved ones, others are still restricted to half an hour visiting per week. Neglectful, poor care still features in their accounts, and relatives are often threatened with further restrictions to access (or residents are threatened with eviction) if they complain about standards. The families are desperate from support from the public. If you feel able to do so, please write to your MP, and join organisations such as Unlock Care Homes and Care Homes in Lockdown. The campaign groups would be grateful for volunteers to help run/man campaigns and organise direct action. 

Links in text above:

Clare Dyer, ‘Some care home residents may have died because of blanket DNR orders, says regulator’, BMJ, 3 December 2020

https://www.bmj.com/content/371/bmj.m4733

Government guidance documents for England:

https://www.gov.uk/government/publications/visiting-care-homes-during-coronavirus/update-on-policies-for-visiting-arrangements-in-care-homes

Unlock Care Homes support group:

https://www.unlock-carehomes.co.uk

Government guidance on visiting outside the care home (now withdrawn)

https://www.gov.uk/government/publications/visiting-care-homes-during-coronavirus

Jane Smith and her mum, on Sonia Poulton’s Raw Report:

https://youtu.be/1EkvTZjAelU

NHS guidance on ‘end of life’:

https://www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/

National Care Forum on restrictions to visits:

https://www.nationalcareforum.org.uk/care-home-visiting-in-a-covid-19-world/

Visiting Charter:

https://www.hartgroup.org/wp-content/uploads/2021/06/Partners-in-Care-Visiting-Support-Resources-Final-version-040321.pdf

Nursing Times open letter:

https://www.nursingtimes.net/opinion/open-letter-infection-prevention-and-control-should-never-be-at-the-expense-of-compassionate-care-16-10-2020/

Alzheimer’s Society survey:

https://www.alzheimers.org.uk/news/2020-06-05/thousands-people-dementia-dying-or-deteriorating-not-just-coronavirus-isolation

Jules Storr and  Aida Suárez-González, BMJ blog on harms of visiting restrictions:

https://blogs.bmj.com/bmj/2021/07/15/enforced-restrictions-to-care-home-access-unfair-unnecessary-and-harmful/?fbclid=IwAR1NKp8hb6sOi3D1NjAQajM49dupDPcBfZKfWllJFfjJB5q04v-uECFjy2A

Harriet Harman, Chair of the Joint Committee on Human Rights – letter to Matt Hancock:

https://www.parliament.uk/globalassets/documents/joint-committees/human-rights/correspondence/letter-to-rt-hon-matt-hancock-mp-re-care-home-and-hospital-visiting.pdf