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.
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.