[Relevant documents: Fourth Report of the Joint Committee on Human Rights of Session 2022-23, Protecting human rights in care settings, HC 216; Fifteenth Report of the Joint Committee on Human Rights of Session 2019-21, Care homes: Visiting restrictions during the covid-19 pandemic, HC 1375; and Correspondence between the Joint Committee on Human Rights and the Prime Minister regarding visiting restrictions in care homes, dated 11 March 2022 and 9 May 2022.]
That this House has considered the matter of guaranteeing the right to maintain contact in care settings.
After much delay due to circumstances out of our hands, I am grateful that we now have the opportunity in this Chamber to debate this incredibly important issue. I thank the Backbench Business Committee for its efforts in finding us time to speak about this in the Chamber today. I also want to extend my gratitude to the hon. Members for Chatham and Aylesford (Tracey Crouch) and for St Albans (Daisy Cooper) and the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts) for their steadfast and resolute support and advocacy on this matter throughout.
People across the United Kingdom are still having to face their time in hospitals, care homes and other care settings completely alone and detached from the people they hold dearest. They are some of the most vulnerable and frail people in our society; some of them will be nearing the end of their lives. The devastating impact of this isolation and of denying contact with loved ones affects those in receipt of care and also their loved ones. It is difficult to imagine, unless we have personal experience, the anguish, pain and stress of not knowing when we will next see our loved one—our husband, wife, mother or father—and repeatedly asking ourselves, “Are they okay? Are they comfortable? Do they even know that I care?”
That same anguish and pain is experienced by the individual receiving care, not understanding why family or loved ones are not able to visit. Shirley from my constituency said:
“My father forgot I was his daughter during the period I was unable to visit. When I was finally able to visit, my dad was unrecognisable. It broke my heart. He has never recovered.”
The support and care given by partners and by parents and children is not an optional extra: contact with loved ones is absolutely vital to dignified care. This point was also made by the 363 members of the public who in the last few days alone provided written evidence for this debate, and I want to thank them for their brave contributions and the Chamber engagement team for collecting them.
Throughout today’s debate we will hear further personal experiences from across the Chamber, but I hope the House will not mind if I take a moment to talk about my own family’s experience last year. My mother and brother contributed a few words, too, and I am grateful to have the opportunity in the Chamber to express them.
My father, Mike, died last year: he was diagnosed with lung cancer in February and died in December. Like many people undergoing cancer treatment, one evening he suddenly became unresponsive and we had to rush him to A&E. At the hospital, it was confirmed that he had sepsis, and he was therefore isolated in a side room on the A&E ward, which was overrun with patients on beds or trollies in the corridor. My dad was in an A&E side room for three days, during which time he did not receive any hot food, he was not showered or washed, nor assisted to change his clothes, and he was unable to get help to go to the toilet. Instead, he was given cardboard containers which were often left full on his bed table for days despite regular requests that they be taken away and replaced. Throughout this time, he had no means of contacting us, because there was no phone signal where he was and he could not access the wi-fi despite repeated attempts.
The hon. Member is making an excellent speech. Does he agree that now is exactly the time that we should be considering this matter, because, as we go into the winter, many care settings will be considering the option of imposing restrictions, and guidance alone has proven insufficient? That is among the lessons that we should have learned over the last two years. The Government should now be acting.
I am grateful to the right hon. Member for that intervention. The Government have previously pointed to guidance as a defence against bad practice, and we have enough evidence to show that that is not good enough. Indeed, while there are excellent examples of good practice across the sector, significant levels of uncertainty and variability throughout the system seriously undermine the rights of individuals. The guidance leads to a postcode lottery as separate settings interpret guidance differently.
That difference is compounded by the response of the Care Quality Commission, which is an organisation that many have had difficult and negative interactions with. The Government encourage those affected to report care providers who do not meet the guidance to the CQC, but by then it may be too late. The poor response is not because the CQC ignores complainants, although there was evidence of that as well, but that it simply does not have the proper powers or data to support people who have their access rights compromised. In the CQC’s own words:
“We do not have the power to require care homes to report live data on levels of visiting, neither do we have the power to take action against those care homes that are not reporting changes to their visiting status to us.”
The CQC, which regulates all health and care services in England, bases its enforcement action on the capacity tracker. However, providers are not obligated to use the tool—they are merely encouraged. That has led to very little, if any, clarity on the true extent of the problem.
By comparison, in Scotland, the National Care Service (Scotland) Bill, places a duty on Ministers to require providers to comply with any direction made regarding visiting. What assessment has the Department made of the Bill and would it be minded to introduce similar provision in England? The evidence suggests that the only way to guarantee contact in care settings is a legal right to an essential care supporter. An essential care supporter would be able to visit or accompany a person in any health and care setting to help communicate their wishes and needs, and to ensure they receive the correct care. If the Government are serious about their support for these calls, if they are serious about acting in the interests of families and loved ones, if they are serious about balancing clinical restrictions with the impact of restrictions on residents’ health and human rights, then I ask the Minister to immediately consider how to put that into law.
Ordinarily when we stand up in the Chamber, we say that it is, for example, “a pleasure to follow my hon. Friend,” but given the very powerful speech from the hon. Member for Liverpool, Walton (Dan Carden), may I say that it is an absolute privilege and that I am very humbled to follow him in this debate, which I am very proud to co-sponsor? I echo his thanks to the people who have engaged with us and taken time to give us their testimony, especially the groups and the people he referred to, as well as those who have sent briefings for the debate.
In 2015, my father had a stroke, which left him physically and neurologically impaired, requiring him to spend the rest of his days in residential nursing care. My sister and I visited him on a regular basis, observing his decline from manly patriarch to someone with childlike vulnerabilities in just over the course of a year. I will not romanticise the relationship that I had with my father, which had been fractured since my teenage years, but I can honestly say that those months of us visiting him in care were the closest that we had felt to him in years. It is true to say that, during covid, I often remarked that I was glad that he had died long before the pandemic, because while no one wants to see their parent or loved one lying on a bed—a thin, pallid skeleton—saying their final goodbyes, blessings or apologies hours before their death, nor should they be denied that right.
Tragically, during the pandemic, and in some cases still today, many of my constituents and others around the country were denied visiting rights, whether that was to care, to celebrate or, sadly, to say goodbye. We should pause for a moment to cast our minds back to the start of the pandemic in early 2020, when the virus was ripping around communities, transport systems, offices, retail places and, of course, health and social care spaces. It was killing people in large numbers, especially the most vulnerable in society. People were frightened and our understanding of the virus was limited. We went into lockdown and isolated our loved ones because we thought that it was the kindest and safest thing to do. We all understood why.
Let me extend my sincere thanks to the hon. Member for Liverpool, Walton (Dan Carden) for leading the debate, and to the hon. Member for Chatham and Aylesford (Tracey Crouch) for co-sponsoring the application. I pay tribute to both Members for sharing their own experiences and those of their constituents in such a powerful way. I am also extremely grateful to the Relatives & Residents Association, to Rights For Residents and to John’s Campaign. Their endless determination to highlight this glaring gap in the law in order to protect some of our most vulnerable, at their most vulnerable, has been critical to the securing of this important debate.
I have to say that, unlike the two hon. Members who have spoken already and unlike many from the campaign groups—some of whom are here today—I have not been personally impacted by this matter, but many of my constituents have. There have been too many examples of families being separated from their loved ones, often, as I have said, when they were at their most vulnerable. Each and every story has been absolutely heartbreaking, and I wish to share just two of them today.
Nearly two years ago, in November 2020, during a debate in Westminster Hall secured by the hon. Member for Beaconsfield (Joy Morrissey), I was able to tell colleagues about my constituent Steph. Steph’s mum had dementia, and had been living in a care home since December 2018, after it had become impossible for Steph’s dad and sister to look after her at home. Steph’s mum was visited every single day, by Steph, Steph’s dad or one of her four siblings, until the pandemic hit early in 2020. Before then, they had been able to lovingly hold her hand, comb her hair, remember stories together, and reminisce about the past. However, this was not just about visiting; Steph and her family were providing essential care.
Contact with and reassurance from loved ones is incredibly important to all of us, but it is especially critical for people with dementia. Family members know their loved ones best. They can identify the very subtle changes in their physical and mental health more quickly. Residents often feel more comfortable about opening up and sharing their concerns with close family members than they might with a care worker, and that is even more true when they do not always understand what is happening to them as well as you or I might.
Four Back Benchers wish to contribute, and we have three Front-Bench contributions and Mr Carden at the end, so I ask people to consider the length of their contributions. We will be going to the wind-ups just after half-past 4.
I congratulate the hon. Member for Liverpool, Walton (Dan Carden) on securing this debate, and I thank my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) for co-sponsoring it.
It has been deeply distressing to hear the stories that have been told in this debate. Human beings have rights, including the right to education, the right to healthcare, the right to bodily autonomy, the right to equality and the right to private family life, free from Government interference, to be able to spend time with their loved ones. It is a sad fact that all those rights came under attack during the covid lockdowns, but we have moved on from those lockdowns, and the covid restrictions have ended, so it is deeply harrowing to discover that it is not the case for some.
In the stories we have heard today, in the stories I have heard from my constituents and in the stories highlighted in TheSunday Times, I am horrified that, seven months after the removal of official restrictions, care home residents are still being denied visits from their families and friends. It needs to be mentioned that some care homes are open and allowing visits, but others are not and continue to prevent family members from seeing one another. That is simply inhumane. It is beyond cruel. Isolation and the loss of social contact has a devastating impact on physical and psychological health. Without the support of family and friends, health outcomes are poorer, as residents lose hope and sometimes even the will to live, and they often refuse treatment. For residents with dementia this is especially devastating, as they do not understand why their relatives have not been to see them. Many also have serious sensory impairments, and for them physical touch and communication with family members might be all they have left.
I am more concerned that this situation is concealing neglect and abuse. As chair of the all-party parliamentary group on pandemic response and recovery, I heard from campaigners back in April, and more recently, who warned of widespread and shocking safeguarding issues involving medication, hydration, hygiene and a lack of basic care. Families must be allowed full access, to support, protect and advocate for their loved ones when they need it most.
I, too, congratulate my hon. Friend the Member for Liverpool, Walton (Dan Carden) and the hon. Member for Chatham and Aylesford (Tracey Crouch) on obtaining the debate, and I thank the Backbench Business Committee for granting it.
Many Members here know Jenny Morrison and Diane Mayhew, constituents of mine who were co-founders of Rights for Residents. Because of the shortage of time, I will not explain in detail what happened to Jenny’s mother, but it is similar to the experience that the hon. Member for St Albans (Daisy Cooper) set out in respect of some of her constituents. However, I wish to say a bit about the ongoing trauma that the experience causes for those left behind, because this is about not only the distress of seeing one’s relative go through the final illness —and the consequences of dementia can be distressing at the best of times— but the ongoing consequences of the restrictions for those left behind.
Jenny tells me that she has hardly had a restful night’s sleep since the doors closed on her mother’s care home, and that she feels as though her mother was locked away. Even though her mother has now unfortunately died, Jenny says that she is plagued by distressing images and painful emotions that will not go away. They have an ongoing impact on her life because the end of life can often overwhelm the earlier positive memories if it is distressing and difficult. Many thousands of people have had the experience of watching from a distance as their relatives in care homes deteriorate. They are unable to visit them, comfort them and watch them die. They have ongoing trauma, and may have for many years. The bad memories come back instead of the good ones. Many people affected in this way go on to feel like they are being selfish for thinking about their own feelings instead of what happened to the loved-one they lost, but they are not. They are suffering from deep trauma caused in part by what has happened.
My mother Nancy had a stroke sometime between Christmas eve and Christmas day at the close of 2020. There was no warning, no time to prepare for this catastrophic event. Overnight she lost her autonomy, her independence and her agency in her own life. She went into the local district hospital and was transferred from there at the beginning of January 2021 to a community hospital specialising in stroke rehabilitation. She remained there until the end of that February. She came back to live with us for a couple of months, with twice daily home carers, while I, her only child, was still able to vote here and speak in debates without having to be physically present in the House of Commons. She had to move into residential care because the period when I could balance caring and parliamentary duties came to an end.
Last November she had a fall and knocked her head. The anti-stroke medication resulted in bleeding on her brain. She was discharged from hospital back to the residential home at very short notice. Just before Christmas she fell again and broke her hip. She died in hospital four weeks later. These are the bald facts of the event. It was my mother’s misfortune to be old and in need of clinical services during the first covid winter. It was the misfortune of all of us as a family that my mother fell ill at a time when covid infection control demanded the absolute isolation of stroke patients. Many of the key workers with whom we interacted over those 13 months were extraordinary.
During the last month of my mother’s life, dementia specialist nurse Delyth Fon Thomas put me in contact with John’s Campaign. She explained to me that, in the last month of my mother’s life, family contact was a right rather than an optional favour. She was the first person in authority to mention that, and she put me in contact with Julia of John’s Campaign, who is, I am glad to say, with other campaigners here in the Public Gallery.
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There were other occasions: once he had to be moved to a ward, when he was left with his emergency buzzer out of his reach; and one time he could not breathe and began to panic, and he phoned my mum, who was unable to get through to the ward by phone and therefore rushed to the hospital. After these experiences he told us that he had felt so lonely and neglected, and unable to alert anyone to his basic needs, and my dad was a man who never liked to make a fuss.
The hospital policy at the time was that visitors were only allowed for patients in end of life care. The NHS website defines that as follows:
“End of life care is support for people who are in the last months or years of their life.
End of life care should help you to live as well as possible until you die and to die with dignity. The people providing your care should ask you about your wishes and preferences and take these into account as they work with you to plan your care.
They should also support your family, carers or other people who are important to you.”
However, at the time, the hospital defined end of life care differently and restricted visiting rights to those patients who were “actively dying”. In other words, they were displaying the physical symptoms of dying.
My mum said:
“This meant that instead of being able to focus on caring and supporting my husband through his final weeks, we had to battle with the hospital to see him. The trauma of my husband’s death—and in particular the neglect he experienced in his final weeks of life—remain with me. It is almost exactly one year since Mike was admitted to hospital, where he spent the last month of his life, and I am still overwhelmed each time I attempt to talk about what he went through.”
I turn to the words of one dementia sufferer, who said:
“I’d forget that I had an allergy, but my daughter was there to correct me. If alone, I would simply have said I didn’t have an allergy—that could be so dangerous.”
The lack of input from the family and friends of those receiving care—the people who know them best—leads to much worse outcomes.
In March, we invited affected constituents to an event where they could share their experiences with parliamentarians on the estate. The testimonies that we heard were harrowing, and the collective trauma was palpable. To give just one of the contributions from that day:
“Sitting with my mother’s body was the longest time I had been allowed to spend with her since she had entered the care home 16 months before.”
That powerful event left those hon. Members present united in the view that a legal right was needed to secure the right of care users to nominate an individual to provide support or care in all circumstances. Many of us at the event were disappointed by the response of the Government and the Minister for Care.
Since the event, 60 Members sent a letter to the right hon. Member for Bromsgrove (Sajid Javid), who at that point was Secretary of State for Health and Social Care, pushing for codification—a legal right to be put into law. We were again left disheartened by the Minister’s response. While we were told that the Government were committed to ensuring that care home residents had access to the support and companionship that loved ones bring, there was no answer to our request for a meeting or consideration of our proposals. Understandably, the campaign groups felt ignored once more. I hope that the Minister will not leave those affected feeling the same way.
The problem is not exclusive to the coronavirus pandemic. There are still rigid restrictions on visiting as well as shocking instances of denying contact. Another of my constituents reported:
“My family and I have never been allowed into the care home that he now resides in. Restrictions have caused unnecessary stress and anxiety to my family and I.”
I cannot think of any other issue that commands such unanimous cross-party support. Indeed, as my right hon. Friend the Member for Leeds Central (Hilary Benn), who I know supports these calls wholeheartedly, said at our meeting in Parliament:
“How can anyone be opposed to this?”
There are also 35 organisations in this area who support these calls, including Mind, Mencap, Disability Rights UK and Dementia UK. The new Secretary of State for Health and Social Care, the right hon. Member for North East Cambridgeshire (Steve Barclay), has previously signalled support for this right. We are ready and willing to work with the Government to make this legal right a reality as swiftly as possible. The Joint Committee on Human Rights has also been unequivocal in its call for legislation in this area. In its report from July this year, “Protecting human rights in care settings” it stated:
“The Government must introduce legislation to secure to care users the right to nominate one or more individuals to visit and to provide support or care in all circumstances, subject to the same infection prevention and control rules as care staff.”
We have not yet had a response from the Government to that report, so may I ask the Government Minister to take that up? We have opportunities in the draft Mental Health Reform Bill and the Bill of Rights to codify this right. The Government could also introduce secondary legislation, which I know campaigners are in favour of. Will the Minister meet me, others and the affected families as soon as possible to discuss making this right as strong and effective as possible? The Government have previously said that legislative options are under active consideration, so please can the Government give much more specific detail on what that actually means?
I want to finish by paying tribute to the tireless campaigning of organisations in this area, in particular the Rights for Residents campaign group, the Relatives and Residents Association and John’s Campaign. The work of Jenny Morrison, Diane Mayhew, Helen Wildbore, Julia Jones, Nicci Gerrard and Kate Meacock has been absolutely inspirational, and they are all in the Public Gallery today watching this debate. Their dedication to this campaign has been phenomenal. I pay tribute to them. In the face of immense loss and personal grief, they have shown incredible selflessness and service to guarantee that no other family member will have to endure the pain of being denied contact again.
Families do not deserve any further delay; they have suffered enough. We must learn from this trauma and bring in legislation. I hope that when the Minister rises to give the Government’s response, she will agree and set out the steps that we can take to get this right.
When I looked back through my casework files in preparation for the debate, I found hardly any complaints about limited access to relatives in the first lockdown, because in a Blightyesque spirit, we got on with it and found alternative ways to communicate with those we could not ordinarily see. Many of us here stamped our feet about care workers not getting enough personal protective equipment and rightly included them in our doorstep clapping, because they were heroically looking after their residents when family and friends could not visit any more. We understood the fear that if one resident caught the virus, it could be devastating for the entire setting, and the duty of care that they held. But then lockdown ended, the summer arrived, the virus declined, our understanding of it improved and our hopes of going back to see residents in health and social care settings were raised—yet when I looked at my casework, I saw that that was when the problems began, and, unfortunately, they still continue.
I stress that I am in no way criticising any individual care home manager or any staff for the examples that I am about to cite. My criticism lies squarely with the Department of Health and Social Care. Its guidance that was published for managers to interpret was wishy-washy at best and is why I now firmly believe that, although we can still respect the individual business that a care home is, a right of access should be enshrined in law to give the manager, the resident and the relative clarity about visiting.
In November 2020, I was contacted by Francesca, whose nan was admitted to a care home following a short stay in a local hospital. Francesca’s family were not able to visit, despite having been told that Francesca’s nan was dying and that they would potentially be allowed only a one-hour goodbye. That was hugely distressing, not only for Francesca and her family but for her grandmother, who was coming to the end of her life without her loved ones around her.
The guidance was often cited, but its lack of clarity left care settings making decisions that were understandably in their own interest, but not in the interest of the resident or the family. After my intervention, visits to Francesca’s nan were allowed and goodbyes were said, but the uncertainty and distress caused could perhaps have been averted with a simple right of access that was clear in its intention.
Likewise, Mura’smother was in a specialist nursing home that houses some very vulnerable and elderly people. Everyone, including Mura, understands the need for caution. When the virus surged in December 2020, care settings like the one that Mura’s mother was in effectively went back into lockdown. Named visitors were allowed if they underwent testing, a process that no relative has ever complained about. However, because the guidance enabled homes to design and implement their own covid outbreak procedures, many were able to prevent access even to the defined essential care giver, denying love and support from loved ones during another period of isolation.
One important point was reiterated when I listened with colleagues to powerful and—as the hon. Member for Liverpool, Walton said—harrowing testimony on access and support rights from campaigners, many of whom are in the Gallery today. This is not just about older people in care homes, or those at the end of life. We heard from Wendy Mitchell, who is living well with dementia, as those who follow her joyous Twitter feed know. She highlighted her experiences of going to appointments alone during the pandemic. I do not need to explain in detail the utter idiocy of allowing people with dementia to attend a healthcare setting where there are discussions about condition, medication and so on. In the head of a 1970s scriptwriter, it would have formed an idea for some sort of sketch show, but it is serious and potentially extremely dangerous.
Youngsters fared particularly badly during the pandemic, and those within care settings were affected quite acutely. I was reading back through my correspondence relating to a young man called Thomas, who has learning disabilities and is in a residential care home. He had a birthday coming up, but the care home was denying his parents the ability to take him home to celebrate, despite the fact that it was—wonderfully, I hasten to add—taking Thomas out for community visits. My correspondence to the care home explains perfectly well what the problem was:
“I have managed to speak to colleagues in both the Health Department and the Education Department about Thomas’ particular set of circumstances and both encouraged me to look at the ethical framework that care settings are required to operate under. I was also reminded that those with learning disabilities, such as Thomas, are not considered clinically vulnerable and therefore do not require shielding in the same way as others with significant health conditions.
I know that Government guidance in residential settings has not exactly been perfect and that care home managers and teams are doing their absolute best to navigate their way through, doing what they think is best for both the client and their staff. However there is a difference between the home Thomas is in and that of an older much more vulnerable person and therefore flexibility is perfectly possible.
It is with that in mind, and with the guidance for the whole nation being slowly eased to allow greater human interaction, alongside an appeal to your sense of compassion given Thomas’ mother’s deteriorating health condition, that I write to urge you to reconsider your decision to not allow Thomas to visit his family home tomorrow for his birthday. There are no ‘rules’ that stop you from doing this and I know that the family will forever be grateful.”
I am pleased to say that the home did allow Thomas to go home for his birthday, but the fact that Thomas’s case related to two different Departments, and the unclear guidance, caused great anxiousness.
In September 2020, a similar case arrived from Dawn about her son with complex medical needs living in 24-hour nursing care. She rightly noted the impact that the first lockdown had had on her son. She wanted me to write to the then Minister, who I am pleased to see back at the Dispatch Box today, to make it clear that a family member could be recognised as an essential part of the care home staff and be allowed to come as much as any member of staff. She felt that homes like the one that her son was in were never mentioned because people automatically thought of care homes in respect of our elderly population. I think that Dawn’s message and that of many others was heard, but its application remains sketchy, even today. [Interruption.] Oh—here is a lesson for Members: make sure you take the last page of your speech off the printer. [Laughter.]
Having reread the accounts of those cases and having listened, back in March, to the testimony of others who had suffered as a result of being unable to visit loved ones, I believe it is a no-brainer to have an absolute position on this matter. The guidance was not clear enough, and it caused distress to residents and relatives as a consequence. I know that the Minister will cite CQC guidance, but it is not strong enough, which is why so many now feel that it needs to be enshrined in one form or another. The Minister will note that there is cross-party support for such a move. We could do it quickly, in time for the winter, so I hope she will consider our pleas seriously. This would protect care home managers, as well as giving residents the right to have their loved ones with them providing whatever support and care are necessary.
We can learn a lot from the pandemic, and I am sure that we will. One of the lessons must be about the devastating impact of isolation on the physical and mental health of those in social care settings. Let me finally repeat my initial point, drawing on my experience with my own father, six years after his death. No one wants to see their loved one vulnerable, incapable of basic functions or in their final hours, but nor should anyone be denied that important time with them. Sadly, many were and some still are, and it is with that in mind that I urge the Minister to think carefully about her response this afternoon, but ultimately to introduce legislation as soon as possible.
Suddenly, however, Steph and her family were separated from their mum. For more than a year, contact was limited. Initially it was limited to phone calls or sometimes video calls, and although that was relaxed a little in the latter half of the year, the family were still only allowed to visit Steph outdoors, in a garden building. Unsurprisingly, like so many others in this awful situation, Steph’s mum simply could not understand what was happening. When presented with an iPad for video calling, she thought she was watching a television programme. She could not understand that she could interact with it, and found the ordeal incredibly confusing. Fences, window visits, plastic screens as barriers—none of those worked for people living with dementia either. They became incredibly frustrated because they just could not hear what was being said. Sometimes, they simply could not recognise their loved ones at all at such a distance. Others simply could not comprehend what was going on. Some felt as if they had been put in prison.
In early spring 2021, Steph’s mum’s condition deteriorated. She was moved to a hospice, where family members could finally spend time with and be close to her, and comfort and care for her. Sadly, she passed away in April last year. After such a long time of being physically separated from her mum, Steph says that she was, in a sense, almost lucky that in a different setting she and her family could actually spend time close to their beloved mum at the end of her life. Too many others have been denied those precious final moments together.
Restrictions were not limited to care homes: dementia patients and the vulnerable were prevented from seeing their children, spouses and carers in other health settings, too. I would also like to talk about Lynn, a constituent and friend. She discovered this whole experience at Christmas time last year. Lynn’s husband, Andy, also has dementia. Until December 2021, Lynn had been looking after Andy at home, with the help of regular professional carers. In a devastating blow, Andy’s condition suddenly deteriorated on Christmas day. He had to be admitted to our local A&E department, and was transferred to an acute admissions ward while a bed in a suitable ward was found.
Although other wards were now accepting visitors, the unit Andy was in was supposed to be temporary, so Lynn could not see him at all. The rules were the rules, and there were no exceptions for people such as Andy, who needed familiar reassurance and help to communicate their needs. As it turned out, because of a lack of suitable beds, Andy spent almost two weeks in that ward. It was not until Lynn contacted me, and I intervened by contacting the hospital management, that she was allowed access to her husband Andy.
We all know that the NHS was and continues to be under considerable pressure, but the lack of suitable one-to-one care with somebody who Andy trusted had devastating effects. Lynn was utterly distraught by his very dramatic and sudden weight loss in the days that she was separated from him. Eventually, after further direct contact from my office, the ward sister finally agreed that Andy’s professional carers could also visit.
We all know that dementia is, sadly, a progressive condition, but neither Lynn nor I were in any doubt that the pace of Andy’s deterioration in those days over Christmas last year was hastened by the lack of contact with those whom he loved and trusted. He had been denied access to his essential caregivers. Andy is now in a care home. When I spoke to Lynn last night, she simply said:
“It is so important that people in care homes have access to their loved ones. Andy isn’t ready to be stuck there until he dies, without love and physical contact. The humanity needs to come back into care.”
We have come a long way since last Christmas, and even further since the beginning of the pandemic, but as winter approaches the NHS and care settings are once again expected to struggle with a surge in covid cases. It is not inconceivable that what happened to Lynn and Andy could happen again to them and to many others.
We now understand much more about effective infection control with covid. Regrettably, we now also understand—from harsh lived experience—the impact of separating those with dementia from their loved ones and essential carers. Guidance exists so that safe visiting can be facilitated by care home operators but, as we have already heard, the overwhelming response from relatives across the country shows that it is just not being implemented in a consistent or fair way.
As it stands, care homes continue to apply rules far in excess of the measures recommended by Department for Health and Social Care guidance. It has been reported that more than 10% of care homes permitted no visitors at all during covid outbreaks between April and September this year; that 20% of care homes confined residents to their rooms for up to 28 days during an outbreak; and that almost half of homes have some form of visiting restrictions in place, even when there is no outbreak at all. As it stands, relatives do not feel empowered to do anything at all about the wildly varying rules put in place by the homes they have entrusted their loved ones to.
In advance of this debate, the CQC got in touch with Members to set out what it thinks it can do about this scandal. The CQC agrees it is vital that people are able to spend time with the people they love. It tells us that, when it becomes aware of guidance, it will take action but—this is the critical point—the CQC does not have the power to require care homes to report any visiting restrictions they put in place.
I am grateful to the Chamber engagement team for conducting research in advance of today’s debate. As we have heard, 363 people have responded to the survey in the last few days, and more than 70% of relatives with concerns about their loved ones in care homes had not contacted the CQC to make a report. Those who did contact the CQC reported mixed success. Some told us that things improved, but the vast majority said either there was no improvement, the CQC was not interested or the CQC simply did not respond.
This is the crux of it: one person who responded to the survey, a woman called Joanne, said
“because I spoke to the CQC we were threatened with eviction from the home.”
This is what so many of my constituents tell me. They fear making a report to the CQC because there are no legal protections for visiting their family members. They are terrified of being labelled a troublemaker, of being stopped from visiting their loved ones altogether or of their loved ones being evicted. There is a huge power imbalance, which cannot be right.
Members met the relatives’ campaign group in Parliament in March, and we heard heartbreaking testimony from families and service users about the effect of these instructions. Every single person agreed that the guidance simply was not working, everybody agreed that enough was enough, and everybody agreed that we needed protections in law. Everyone except the then Minister, who unfortunately was not able to make it until the very end of the session with a pre-prepared speech, and who had not heard the powerful and harrowing testimonies of those who attended, many of whom are in the Public Gallery today.
The new Minister is here to hear some of those powerful testimonies, and I hope she will conclude, as we have, that the evidence is overwhelming. We must put an end to this scandal. We have to be able to say, “Never again.” As other Members have said, there is cross-party support and we will work with the Government to put this into law. Surely the time has come to create a new legal right to maintaining contact.
What can be done to end this unnecessary suffering once and for all? It is now beyond urgent that care homes, local authorities, the UK Health Security Agency and the CQC stop blaming each other for these appalling failures of policy and take action. Rather than requiring new legislation, we need to uphold existing laws. Article 8 of the Human Rights Act and the Mental Capacity Act 2005 should have protected against this situation ever arising. Instead, that legislation is being wilfully misinterpreted as an excuse to keep people isolated in care homes; sometimes they feel as though they are prisoners. So I call upon the Minister to get tough on any care homes that block residents from seeing visitors. There should be severe consequences for those who continue to blight the lives of those in care, and they should face fines or legal action.
We are failing vulnerable members of our society and it simply cannot be allowed to continue. We must end all unlawful visiting restrictions and stop this unnecessary suffering and neglect. It is deeply shameful and a stain on our history that our country has allowed this to happen, and that it is still happening so long after covid restrictions have been lifted. Some care homes say that these restrictions are due to staff leaving the sector when mandatory vaccinations were called into use. May I ask therefore what the Minister and the Government are doing to get those staff back into the care homes and into those jobs? It could be that up to 7% of care home staff were lost, which represents 40,000 employees. What are the Government doing to reinstate them and compensate them for losing their jobs? As Professor Robert Dingwall told our all-party parliamentary group at the inaugural meeting last year:
“A good society is defined by life, health, liberty and the pursuit of happiness, not by the prevention of one disease alone.”
Jenny Morrison and Diane Mayhew were co-founders of Rights for Residents. They have sought to turn their terrible experience into something much more positive—into campaigning for these changes, and I commend them enormously for that. The fact that covid is no longer seen as the threat that it was does not mean that the restrictions have gone away. As many hon. Members have said, they are still being used in care settings. In that context, it is tremendously important that a legal right is established.
The Relatives and Residents Association and Rights for Residents surveyed some of their families and discovered that the harm was continuing. One in five outbreaks saw residents confined to their rooms. One in nine outbreaks saw residents not allowed any visitors at all. Care homes were still implementing blanket visiting restrictions, when there was no necessity for any such thing. Quite often they say that it is because of Government guidance or that local authorities have suggested that they should have these restrictions. None of this is accurate or true, but it is still stopping families visiting their relatives in care homes. How much longer is this going to go on? How much longer are the Government going to allow this to go on?
I do not think—something highlighted by the Joint Committee on Human Rights—that changing the guidance 30 times in a short period helps any understanding of what the guidance actually says. That is not helpful. Let us have a law swiftly that says that residents in care homes and those having care and health support have a legal right to be accompanied by a relative—at least one, perhaps sometimes more would be appropriate. That is unequivocal; it is clear. It can be clearly understood by whoever needs to understand it. That is the answer to this. I hope that the Minister will agree and swiftly enact such a change.
Look up the long list of hospitals and other organisations that have signed up to John’s Campaign. They recognise that a key family member is more than a visitor—they are a carer as much as anyone on the payroll. But, I say to Members, try to get that information volunteered to you, try to find out what your rights are, because they are not given to you on a plate. People such as Delyth confounded the cliché of monolithic public sector organisations, which may well prioritise institutional interests and risk aversion to the detriment of those services that we trust them with providing. I think that, as private individuals, many people will have had that experience.
None the less, despite Delyth’s help, I only touched my mother’s hand once during the critical six weeks after her first stroke. Yes, we could arrange to speak to her through a glass window as she sat in a hospital stairwell and we stood outside in the car park, peering in. She could not hear us—incidentally, her hearing aid had been kept in a cabinet all the while and the batteries had run out. Yes, we could phone and arrange to speak over an iPad, but she could not hear us; she could not understand us. There were no hugs.
Health authority infection policy vetoed family bonds of love as a health hazard to be minimised. Of course, at the onset of covid, we had to adapt and learn quickly about how to cope with an unfamiliar, life-threatening and highly infectious virus. We put in place measures such as lockdowns and visiting restrictions at hospitals and care homes, because that was the best that we could do; that is all we knew back in 2020. We had to learn as we went along, but have we truly learned the most important lesson of all? Treating the elderly and people with dementia as units of flesh and bone by meeting the barest minimum of their physical needs is wrong. We are social animals: take away our social support and we fail to thrive. Denying family contact causes immediate welfare harm to patients and longer-term harm to family members.
That is the context in which we must apply the abstract terminology of legislation: the Equality Act 2010 recognises the basic principle that the needs of disabled people should be assessed and reasonable adjustments made to meet those needs. People with dementia and cognitive impairments are disabled. Then there is the matter of human rights, which have been touched on. Article 2 of the European convention on human rights places an obligation on the state to secure the right to life. Article 8 protects the right to private and family life, but how these are balanced in care settings is critical, and how we shift that balance as we move along is also critical. It is also surprising that the Human Rights Act 1998 applies only to publicly funded residents in care homes.
This evidently unjust inconsistency is why the Government must step in. Why should the owners of private care homes, especially in England where local authority care is far less available than in Wales, be able to make such immense decisions, and possibly prioritise convenience over residents’ and families’ rights? Indeed, if we start from the point of view of people in need of care, the care setting itself should not depend on whether it is in the public or the private sector. If the individual has a right, that right goes with them throughout their lives—whether they be in hospital, at home or in residential or nursing care. A right is not a right if its only guard dog is guidance.