I beg to move,
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.
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.”