I beg to move,
That this House
has considered family visit access in health and social care settings during the covid-19 outbreak.
It is an honour to serve under your chairmanship, Ms McVey. My main focus in speaking today is to highlight the need for improved patient advocacy and adult safeguarding via visitation rights for family members of working-age disabled adults in full-time residential care, including those admitted to hospital. Such patients often cannot speak for themselves and need additional access to family members who are able to advocate and communicate on their behalf.
I applied for the debate because of an awful situation of a mother in my constituency—a mother, much like me or any hon. Member present, who has had to endure a situation that I hope no mother has to face in the future. She is a teacher, a local community advocate, a single mother and someone who has tirelessly fought for her child’s care needs. She was prevented from caring for her son, Jamie, and forced to abandon him to a care home that did not live up to its name. At 21 years old and with no visitors, he was left isolated, bewildered and depressed, often calling out in anguish, “I want my mum. I want my mum.”
Jamie was a warm and affectionate young man who loved touch, kinaesthetic learning and being with people. His mother was denied access to her child, and I cannot begin to imagine what it must have felt like, knowing that her son was denied the care of his family for months—denied a hug, denied the comfort of a warm hand holding his, and denied dignity in his suffering. As a mother, my constituent felt powerless but sure that, had she been able to see him, she would have identified his decline and been able to intervene.
Underfed, Jamie wasted away, getting thinner and thinner in his confusion and isolation. Separated from those he loved and trusted, with multiple bedsores and open wounds left untreated, he began to withdraw within himself and into a catatonic state of unresponsiveness—a young adult with complex disabilities and care needs, left to suffer in silence. By the time his mother was able to see him, it was too late. She reflected on the lack of status that she felt as a mother, which she felt was shared by many family members. It felt to her as though families are often seen as a nuisance or even a threat, and they are sidelined and ignored by some in adult care homes. This mother also felt strongly that some adult care homes do not embrace the care of the whole person.
Jamie entered full-time care at age 13. As a child in a care setting, it was wonderful. The care was holistic and helped support Jamie in every aspect of his daily life and learning. He thrived in that environment, but the change came when he moved into adult social care. Many adult care homes are excellent and highly skilled in supporting adults with complex disabilities, but others—it might be a very small minority—seem reluctant to work with families or to provide adequate levels of transparency and care. It is an ongoing problem, which existed well before the covid pandemic; that has only highlighted these issues.
Disallowing visits or video links that allow families to see and interact with patients takes away a level of scrutiny that makes those already vulnerable chronically so. Depriving vulnerable working-age disabled adults who have complex disabilities and needs, especially those who already struggle with communication, of the love and support of their families is inhumane and cruel. As a society, we lessen our dignity and humanity when we allow our loved ones to perish alone and to wither away and give up on life. Jamie had no voice, so I am here today to speak on his behalf, and on behalf of his mother and grandmother, to make sure that his story is remembered and that other deaths can be prevented this winter.
I welcome the Government’s support for care homes and adult social care during the pandemic and I thank the Minister for reaching out to me the moment that I applied for this debate. She has been incredibly helpful and I thank her for her active participation in finding a solution and justice in Jamie’s case. I thank the Government for their care home support package in March that announced £1.6 billion funding for local government and £1.3 billion to go to the NHS and social care. In April, a further £1.6 billion was announced for local government and for the adult social care action plan and, in September 2020, the Government published “Adult social care: our COVID-19 winter plan 2020 to 2021”, which was shaped and recommended by the adult social care taskforce. The plan set out key elements of national support available for the social care sector for winter 2020; I welcome everything that was outlined in it.
Finally, I welcome the Government’s announcement on visiting guidelines from
Now that we are in the second lockdown I ask the Minister and others to consider what lessons we have learned from the excess deaths in care homes and from the adult safeguarding issues raised during the first lockdown. I understand that the main goal of the Department of Health and Social Care is to protect the NHS, particularly during the winter months, but we also need to save the lives of the vulnerable disabled by allowing each patient to have a family member with them as their advocate and carer. That would be aided by the improvement in mass testing in the coming months and the availability of personal protective equipment. This cohort needs a special exemption. A carer would allow for lives to be saved and, with mass testing and the arrival of a vaccine, that could help safeguard many other lives in the future.
If the NHS reaches capacity, as it often does in the peak winter months of January and February, another alternative would be for a family member or carer of the vulnerable patient to care for them directly in a home, a hospital or care home setting. A family member or loved one can also help with caring for the vulnerable person at home, further reducing the burden of care to the NHS. Many of these family members are able-bodied adults who are at a lower risk of developing serious health problems from covid-19 transmission. We also have to allow people to care for those they love.
I welcome the Government’s announcement in the winter care plan that local authorities should work with social care services to reopen safely, especially day services and respite services. Reopening such day centres would allow families to manage a disabled loved one’s care more effectively, while perhaps reducing the need for full-time residential care and lightening the burden on full-time carers who do not have access to vital daycare facilities. The Relatives and Residents Association, which is an advocacy group, reported that helpline callers had been concerned about the standard of care falling as already stretched services face staff shortages and burn-out. Stopping visits from family and friends restricts the ability for oversight and advocacy.
One of the callers to the association’s helpline said that his wife
“starved herself to death. Her death was due to the pandemic but she did not die from the virus itself. It wasn’t coronavirus—it was death due to a refusal to eat. She was isolated and alone.”
Perhaps the Minister could provide clarity as to whether families are now permitted to remove their loved ones from residential care home settings, and what the protocol for that would be, moving forward.
Jamie’s care home was in a neighbouring county, but his mother and grandmother lived in my constituency. Buckinghamshire County Council and the NHS are excellent and I worked extremely closely with them during the pandemic and the first lockdown to protect care homes and elderly residents, and to reduce the rate of transmission and death in care homes. I was proud of the work that we all did to protect the elderly in South Bucks.
However, the issue of working-age adults with complex disabilities in residential care facilities completely passed me by in the first lockdown, because many of my residents had additional needs and were at home. They were reliant on day centres and respite care. That was the issue I was seeing, not the issue of the long-term residential care crisis.
I did not learn about Jamie’s treatment during lockdown until the week before his death, when it was too late for me to help. That is why I am raising the matter now. This patient cohort cannot speak or advocate for their own care. They require extensive care and support from care home and hospital staff, and could run the greatest risk of being sidelined during a spike in hospital admissions, when staff resources are spread more thinly and they have to prioritise patient care.
Because these patients require the most care it is important that they have a family member who can be with them as their patient advocate and carer, to help ensure that they make it through these winter months. I welcome the Government’s announcement of a vaccine and I know that, with the highlighting of safeguarding, we can get through these winter months, and that Jamie’s memory will not be forgotten.